Routine marker testing and recurrence... worth it?

[Soccermom]

I am hoping that Lani will have a look at this and comment. I was just looking at my original pathology and came across this article online. Its from 1999 and I wonder IF it still holds water,so to speak?...

<TABLE width="75%" border=1><TBODY><TR><TD width="35%">C-erbB-2, CEA and CA 15.3 serum levels in the early diagnosis of recurrence of breast cancer patients.
Molina R, Jo J, Filella X, Zanon G, Farrus B, Munoz M, Latre ML, Pahisa J, Velasco M, Fernandez P, Estape J, Ballesta AM.
Laboratory of Biochemistry (Unit for Cancer Research), Hospital Clinic, School of Medicine, Barcelona, Spain.
</TD><TD width="65%">Anticancer Res 1999 Jul-Aug;19(4A):2551-5 Abstract quote
C-erbB-2, CEA and CA 15.3 serial serum determinations were performed in 250 patients (follow-up: 1-4 years, mean 2.5 years) with primary breast cancer and no evidence of residual disease (NED) after radical treatment (radical mastectomy or simple mastectomy and radiotherapy). Ninety-five patients developed metastases during follow-up.
RESULTS: Abnormal c-erbB-2, CEA and CA 15.3 serum levels (> 20 U/ml, > 10 ng/ml or > 60 U/ml, respectively) prior to diagnosis were found in 28.4%, 31.6% and 46.3% of the 95 patients with recurrence, with a lead time of 4.2 +/- 2.4, 5.0 +/- 2.5 and 4.6 +/- 2.7 months, respectively. One of the tumor markers was the first sign of recurrence in 69.5% of the patients. Tumor marker specificity was 100% with levels lower than the cut-point in all 155 patients without recurrence. Tumor marker sensitivity was clearly related to the site of recurrence, with the lowest sensitivity found in locoregional relapse and the highest in patients with liver or bone metastases. C-erbB-2 sensitivity in early diagnosis was significantly higher in patients with c-erbB-2 overexpression in tissue (10/12, 83.3%) than in those without overexpression (1/34, 2.9%) (p = 0.0001). Likewise, higher levels of both, c-erbB-2 and CA 15.3 at diagnosis of recurrence, higher sensitivity in early diagnosis of relapse and a higher lead time were found in PgR+ patients (CA 15.3) or in PgR- patients (C-erbB-2) (p < 0.015).
In conclusion, tumor markers are useful tools for the early diagnosis of metastases, being the first sign of recurrence in 69.5% of patients with relapse (76.3% in patients with metastases).
</TD></TR></TBODY></TABLE>

Marcia

[hutchibk]

All I can offer is that my CA 15.3 has always been the earliest indication that I had distant mets... in 05 when I showed up with my first recurrance, lungs and chest nodes, CA 15.3 had started to slowly rise a couple of months before we did scans. Then in 06 when it showed up again in chest nodes and bone spot in neck, CA 15.3 had started to inch up again before we did scans... and again in April 07 when we found the brain mets, CA 15.3 had started to inch up yet again from the plateau number that it had been steady at for 8 months, before we did the brain MRI. So for me, TMs are definitely worth it!

[Carolyns]

I have had them run for 19 years since the first of 3 times with BC. At age 32 with my diagnosis I demanded continued follow up beyond 5 years. I figured if they were mandated in the trial...why not continue? Each time I went for more than 5 years with NED. Recently (the past 7 years) my insurance company no longer allowed my onc. to do the blood draw. I had to go through my primary and then he was to send results to the oncologist. Well evidently when my markers started to rise no one noticed. So even in this case my markers would have given us the heads up that something was up.

So, I believe that markers are a good thing to follow and were in my case. I would add to that that it is a good idea to confirm that no news is good news on any test. Had I asked about my markers then I would have known that they were on the rise and I could have pushed for more testing earlier.

Good luck, Carolyn

[fullofbeans]

Great question thank you I had just been wondering how much to untrust the Ca15-3.

Could someone explain why there is a distinctinction between why is Pr+ is (Ca 15-3) and Pr- (C-erbB-2)? not quite sure what they mean by that.

Also what about the CA125?

Thanks in advance for info

[Faith in Him]

I unfortunately will not be getting any TMs. My onc doesn't trust them. But after reading all these posts, I wonder if I should push harder.

I am kind of confused, because they do draw blood about every other herceptin infusion. I wonder what they are looking at?

[hutchibk]

I know that some/many docs don't believe in them... I am glad that my doc does. He doesn't rely soley on them, but they are an integral piece to the puzzle in my journey - and like I said, they have always been the earliest indication of my recurrances. Especially before I was metastatic, and being Her2+, he felt that it was important to have as much screening info as we could in case I developed mets (we wanted to know as early as possible)... and my rising tumor marker was our first red flag to look at things when we found my first mets, and ever since then, mine have corellated directly to recurrance. Mind you, my doc always reminds me that the TMs might not always rise even if I have new activity, or that them rising may not always mean new activity, that we can't count on them being absolute every time, but they are a big part of our puzzle.

[new shoes]

I am getting my first TMs drawn next week. What kind of numbers should I be looking for? What is considered low, moderate, or high?

[StephN]

Hi Beans -
The CA 125 is to detect Ovarian cancer. I have had this drawn with no opposition from my med onc. Once we have ONE cancer, we are at HIGHER risk for a second cancer to come along. Reproductive cancers are high on that list. So, I consider that I at least have a base line for the 125 with two tests reading at the same level.
One thing I am not sure of is whether Ovarian is normally more hormone driven.

As for the BC markers and CEA, they have always been good indicators for me. Before we really knew that to be the case, my med onc explained he wanted to keep checking them as the favorite places for BC mets were more sensitive to the markers (as stated in the research cited by Marcia) and with my more aggressive disease profile he wanted to keep me close on his radar screen.

The CEA marker was sensitive to my brain mets and CA27-29 rose and fell with my extensive liver mets.

In short, if the onc is aware of how best to use the markers and what they are best at indicating, they might not be so mistrustful. We also have the HER2 serum test, which may not be approved for early stagers, but many of us have put it to good use since its release.

[tousled1]

My oncologist ran tumor marker tests and my HER2 serum every 12 weeks. My TMs never changed - right now it is 15.1 and it was 15.3 when I was initially diagnosed. Therefore it is not a god indicator for me. We have found that the HER2 serum test is much more reliable in my case. It was the first sign that I had developed mets. some oncologists do not run TMs.

[fullofbeans]

Thanks Steph for clarification, I am assuming C-erb2 is the same as her2 serum (?)

My CA15.3 was elevated when I had mets to liver does that mean that I should trust this test when in the future it continues to show no change (I like to assume), because it showed it has worked for you in the past?

what I am asking is that if a TM has worked for you in the past is this an indication that it will work for you in the future?

[StephN]

Hi Beans -
This is from the Revolution Health website:

"cERB2, also known as ERB2 or HER2, is an oncoprotein overexpressed in cancer and is detected by immunohistochemical staining or by fluorescence in situ hybridization, known as FISH, which detects gene amplification. This test is performed at the same time as testing for hormone receptivity, or estrogen and progesterone receptors."

Maybe in other countries they use the cERB2 designation - had not noticed it before you mentioned it.

My cancer center does not use the C15-3 as my med onc explained they feel the CA27-29 is more accurate and a newer test. Anyway, if your marker was elevated and you had mets, then there is no reason NOT to continue to check it periodically. That marker test may not be sensitive to ALL kinds of mets, but if your liver acted up again, seems to me the marker would rise.

I have had my CA27-29 taken either every 3 or 6 weeks for the last five years. It has been in the same range (normal) within maybe 2-3% fluctuation. Since I have also had clean scans to corroborate the marker, I feel good continuing to use markers and drawing a HER2 serum (the Bayer Elisa test) a couple time a year for good measure. Then I go on about my life with peace of mind.

[Soccermom]

Steph, Thanks for stepping in and explaining the cERB,CA-125. Based on the responses I have read here,many still get routine markers. I know the prevailing school of thought is that there is no survival benefit , BUT, its obvious that its helped many get prompt attention when #s are elevated. I find it frustrating that the powers that be would still have no tests be done as followup. Peace of mind can be a powerful thing.
Thank you all Ladies for your thoughts and input!
Marcia

[hutchibk]

I would like to stand as proof otherwise in deference to the prevailing thought of no survival benefit. I would not be here now were it not for tumor markers!

[Mary Anne in TX]

This thread made me remember again, how complex this ol' disease really is. I do the CA 27-29 every time I go for herceptin and find comfort in knowing that something besides my not so good awareness is "watching out for me"! I spent a couple of hours reading again about the marker I get and was reminded of all the other things it can be triggered by. But I do know that when it rises, I get more tests, scans, etc. I can't imagine not having it. My last ones were 30, 41, 35, ?. I'll check on the last one today. I have a tendency to want to "believe that all is well" and it's a good reminder to stay alert! And to keep believing too! Thanks to all who shared. It's like the food and supplement threads. I know what to do, but I like so much to be reminded how and why! It also keeps getting me out the door each morning for my walks! ma

[dlaxague]

Hi all,

There is a big difference between the value of tumor markers for those who have already had a distant recurrence, and those who are NED after primary disease. The article that started this thread was about tumor markers after primary disease, and so replies from those with mets are irrelevant. Interesting, but irrelevant. And did you notice that the article did not address benefit from finding mets sooner with tumor markers - it simply said that it was possible to do so. Duh. But why would we want to do that, if there's no benefit in it?

If one has had that distant recurrence, and tumor markers were elevated (not all cancers elevate tumor markers), then tracking the markers is one tool for monitoring response to treatment. They are usually not stand-alone and are supplemented with scans, but tumor marker results can help signal when it's time to take a look with scans. Most docs use tumor markers as one of the tools to monitor advanced breast cancer (for those whose cancer does elevate the markers), especially when in treatment. For those that achieve NED after mets, it's a little more gray and I don't know of much research there. It could be argued that at that point, it's back to the after-primary-disease algorhythm where there's no benefit to finding progression before symptoms appear. The exception here would be monitoring for brain mets because that is one area where it helps a lot to find them when they are smallest. But that's typically done with scans rather than relying on TM's, right?

So on to that area that's so hard for us to get our minds around -tumor marker and/or scans after primary disease. The recommendations for follow-up are for physical exam/symptom report only. (in addition to mammograms if breasts remain, and uterine exams if uterus remains and on Tamoxifen). The reason that this is the recommendation is that good studies have shown that even if mets is detected before symptoms appear (using scans or tumor markers), there is no benefit to surival, nor to QOL. Women do not live longer, or better, if their cancer is detected before symptoms. In addition, there is really very little reassurance in a negative tumor marker - first of all you do not know if it's accurate for you (many recurrences happen with no elevation in markers), and secondly it only tells you about today and offers no guarantee for next week.

Okay - again - talking now to those who are NED after primary diagnosis - this has nothing to do with those being monitored after metastic recurrence. Why would you want to subject yourself to the anxiety and stirring-up of cancer fears that come with a test that offers NO benefit to you? Why would you want to squander health care dollars for a test that offers no benefit? There is no such thing as "catching mets early". Mets are NOT early, they are advanced disease. If mets happens, they either do or do not respond to any given treatment and response seems to have little to do with amount of disease (except brain mets). Look at the many women on this list who had quite extensive mets, even to vital organs - yet they achieved NED-ness with chemo/herceptin. Others with small areas of mets struggle to get a response, trying many different chemos but experiencing steady progression. When talking recurrence, it's less about size and more about response. (that may be true for primary disease too - but we haven't figured out, yet, how to know that).

So - again - for those who are NED after primary treatment, there is no benefit to "watching really closely", no matter how high your risk of recurrence is. NO BENEFIT. Report any symptom that persists for more than two weeks, and be sure that cancer recurrence is ruled out before garden-variety causes are explored. That's all you can do. Of course, we wish that there were a way to make us safer, by using intensive surveilance. But intensive surveilance does not prevent recurrence and it does not improve survival nor quality of life. In many cases, because of the anxiety testing causes, it detracts from quality of life. I know that it's a hard thing to accept and understand, and that we wish there were more we could do. We can hope that someday there WILL be more, but right now this is the reality. Why not accept it and go seize those moments?

Debbie Laxague

[Soccermom]

Debbie,
Thank you for your easily understood explanation!
I currently have markers every 12 weeks, and scans evry 6 mo.BUT that is about to end as I have reached my 3 years since DX.
I am grateful for each and every day that I "believe" that i am NED. If that time should come where I am worried about a particular ache or pain I will pursue it. I guess its all about where your own comfort zone is. For some (even those NED) occaisional
monitoring via markers brings "peace of mind". I would have to say its worth it to them...and I believe that their QOL is impacted.For others,perhaps the testing stress is too much.
I understand the logic behind the arguments...but... we are not statistics and our cancers are as individual as we are.
Warmly,Marcia

[hutchibk]

HI Debbie - read my posts a A LOT closer. They are NOT irrelevant to the discussion. I beg to differ wholeheartedly. I did not have advanced b/c the first time my TMs hinted to us that I should go for scans. I was (stage 2b) at primary diagnosis, had mastectomy and first-line chemo, and then I was NED for 15 months. Luckily we had established a baseline for my CA 15.3 from the point at the end of my initial chemo and routinely followed my CA 15.3 while I was NED and was expected to stay that way... But my doc doesn't like to take chances, he errs on the side of caution with Her2, and believes that the earlier and smaller the mets are when found, the better the treatment options and outcomes will be... he doesn't rely on TMs as an individual indicator, but he considers them in combination with the whole picture. It is a piece of the puzzle. So then after 15 months of NED, my TMs started to inch up for a couple of months and we scanned out of an abundance of caution and found my very first mets (lungs, chest nodes) after being NED for 15 months. We found them much smaller, much earlier, and much much much more treatable than we would had we not had that initial clue and just waited for symptoms. (Sometimes there are NO symptoms until the mets are very large, making them much harder to treat and offering less options for treatment, i.e. liver mets that are small and eligible for ressection as opposed to liver mets that have taken over the liver and can only rely on chemo for treatment...) In my case, because we found it early, we were able to treat it appropriately, less aggressively, and subsequently less expensively. There can absolutely be a survival benefit, and no-one can tell me otherwise. Sorry.

If your "opinion" is that there is no benefit to watching really closely, then that is your experience. I would be careful telling others that there is absolutely "no benefit to "watching really closely", no matter how high your risk of recurrence is. NO BENEFIT." Or that "intensive surveilance does not prevent recurrence and it does not improve survival nor quality of life" - It did not prevent my recurrence, but it offered me earlier info, more treatment options with better outcomes, and did improve my survival and my quality of life. Hands down.

I take offense to the disdainful and self-righteous tone in your post. Expecially a sentence that simply says: "Duh." There are those of us who have had an entirely different experience than the "absolute certainty" that you profess in your post.

[AlaskaAngel]

Soccermom/marcia: Thanks for starting this interesting conversation!

DLaxague/debbie:
1. Why would the amount of tumor burden at time of taking action in previously NED patients be irrelevant? Are there large and reliable studies that show that to be true?

2. Are you basically saying that because a drug like trastuzumab (plus perhaps additional drugs such as chemo or other) is so successful for so many previously NED in knocking mets to the NED again, that there is no reason to use markers for the smaller number of seemingly NED patients in whom it is unknown that trastuzumab (plus perhaps additional drugs such as chemo or other) is not working?

3. In trying to understand the concept that there is really no benefit to markers in those who are initially NED after treatment, I understand that means there are 3 groups of bc patients: those who have mets at diagnosis, those who stay NED indefinitely, and those who eventually develop mets. And I do understand that what you are saying is based on impartial study results, not on intuitive logic. But since we only know for sure who is in which group in regard to those who have mets right off the bat, why would the covert development of additional tumor burden in seemingly NED patients not be more likely to shorten life sooner? Are the studies really showing not so much that markers don't matter, but rather that treatment is so lousy for those in whom Herceptin (plus or minus other drugs) does not work, that knowing the cancer is back makes no difference?

FOB: Thanks for the question about PR- and PR+ and c-erb-2, as I too was confused by that... and sort of still am... I've not seen c-erb-2 used before to mean serum HER2 measurement.... but guess that is what they mean? Always c-erb-2 has meant only the tissue testing before... from what I've seen, anyway.

A.A.

[Carolyns]

Debbie,

I am speaking from my own personal experience. I did not have mets and I was followed with TMs. Like Brenda, I was being followed after a Stage I diagnosis when my markers began to rise. (This was after my second diagnosis with a new primary BC in the other breast.) Perhaps the fact that the doctor's overlooked the rise in markers wouldn't make me live longer. However once realized and combined with more testing we learned that my C-6 vertebrae was ready to melt away and could cause paralysis from bc mets. So in my case it mattered a great deal as a "piece in the puzzle" to get me help and treatment. Getting treatment in time kept me working full time, riding a bike and living life as an active mother to a 9 year old. A big BENEFIT to me and very cost effective.

As far as how the doctor's know whether or not someone with mets detected early will live longer...I don't know. I am sure that there is some scientific calculation based on others but are those others like me? I am not "typical" in the bc population.

I flash back to my diagnosis at 32 (19 years ago) and conventional wisdom prevented me from getting a mammogram for over 1 year. I was too young according to guidelines back then. They were the doctors and I wasn't. Well I finally found a doctor who would prescribe a mammogram and that is how I was diagnosed. The study I participated in required Chemo and followed by tumor markers to be drawn every 6 months for 5 years...I still wonder why TMs? Anyway, that is where I took my lead. If TMs were required in the study than I wanted to continue with them since they had always held steady for me.

I can read the guidelines all day and all night and so far I have been outside of them. I don't want to be right I just want to stay alive even if it means going against the guidelines. My situation has always been slightly in front of the guidelines but I don't have time to wait for the guidelines to catch up. I can only share my experience. It is what it is.

As a breast cancer survivor, I would not go to a doctor who told me that discovering mets early has no benefit to survival or quality of life. I believe that idea could have contributed to the delay in a mets diagnosis for me. As someone diagnosed with cancer in my early 30s I have learned that I must stay alert. It is what works for me but I know it is not for everyone.

Carolyn

[fullofbeans]

Debbie:
'No benefit from being able to detect cancer recurrence early'.. I would be most grateful if you could let us know how you came to this conclusion.

From my personal experience (yet one more person) it was different. Surely you have heard of new technics that allow to treat tumours that are up to a certain size only (brain, bone). Chemo needs to be broken down by liver so if you wait for it to stop working properly..you will be in for a treat..

However I think that it is difficult to check all stage 1&2 and that the risk from radiation from scans should be weighted against the 60-80% chance of being cured. Irregular TM sounds like a nice compromise from the above paper.

There was no need to restate that it was for primary cancer as oppose to MBC, it was already quite clear from the article.

AA:
Thanks, yep I am still confused about the PR- and its association with TMs too..
Steph I am still not sure that c-Erb2 simply means just Erb2

[Soccermom]

FOB, when I Googled c-erb2 ,Genentechs Herceptin page came up...so I am assuming its the same as Erb2..as for the PR-, I still havent been able to figure that one out (not for lack of trying).
I will email the article to a Doc of genetics I know and see what he thinks..

Marcia

[AlaskaAngel]

No wonder learning about HER2 bc is so confusing!

Steph's quote is of course accurate, in what it says about c-erb2. I should have been very specific in my statement about it. "c-erb2" is another name for HER2/neu -- and I suppose it is used in some contexts as saying the same thing as "HER2/neu test" without actually saying "HER2/neu test . But even when it is, it only would refer to testing that is run on tumor tissue, where the tissue is stained -- and I've never seen it used to refer to serum testing for HER2.

I don't understand what the connection is for PR- or PR+ in this particular report.

Alaskaangel

[Becky]

I believe that the earlier mets can be diagnosed, the better the quality of life for the patient. For example, less toxic cocktails can be used like Herceptin/Arimidex, Herceptin/Tykerb, Herceptin/Avastin. Many of these targeted therapies don't do as much damage to the body as chemo does, yet it may bring on complete NED or NED for quite awhile before bigger guns have to be employed. Oncs really have to work with the big guns when tumors are large because those tumors can get in the way of the body working properly. Secondly, getting it under control while small means it isn't a big tumor that is shedding cells all over the place - yes, treatment will still get these cells but it gives more chances for some of those cells to go to the brain.

I am PR- and don't understand what the study is trying to say and I really like to understand since being ER+, I would love to figure out the real role of the progesterone receptor (or lack thereof) in this disease.

[dlaxague]

Hi all,

My goodness there is a lot of emotion in these replies. I am okay with that. I like debate because I learn from what others say, and I learn as I think thru what I'm trying to say. But we can keep it polite and we'll all learn more. I might even change my mind, or you might change yours. Or we can just agree to disagree, and still respect each other.

My post did not contain my "opinions" about tumor markers as follow up after primary disease. I posted what the NCCN (National Comprehensive Cancer Network) guidelines advise as follow up after primary breast cancer. I've posted this before on this list, and have met the same resistance. There have been several large well-done studies that have shown no benefit to finding mets before symptoms herald them. These studies were judged well-done by the experts, not by me. Here is a link to the NCCN breast cancer guidelines. The short paragraph about follow up is on the left side of page 23, and the references are at the very end of the long (100 page) document (it takes awhile to load, be patient).

http://www.nccn.org/professionals/ph...PDF/breast.pdf (http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf)

You can give anecdotes all that you want about "early" detection of mets making a difference, but there is no way to prove nor disprove whether it really made a difference or not. We can find a similar number of anecdotes about widespread mets responding well, too. And vice versa, as I said in my first post - we can find anecdotes of minimal, "early" disease that responded to nothing.

I think that I mentioned several times in that first post that brain mets are in a different category, especially for those who had herceptin as treatment. There is value to finding them early and small but I don't think the recommended way to do that is with TM's - I think it's with brain scans. And even with HER2+/Herceptin, brain mets are an unusual site of first recurrence so it could still be argued that after primary disease there is unlikely to be value to brain surveilance. I don't think that I'd argue with anyone who wanted regular brain surveilance, though.

The way to know these things (treatments and plans of care that are of benefit) is to do large studies, and to do them well. That has been done for this issue (follow up after primary disease) and these are the answers. I don't see how you can argue with that. (but if you want to, I'm willing to continue the polite debate).

I think that the reasons for this truth are very important. We do not know the reasons, although there are lots of fascinating theories that could explain the dynamics, and research continues to try to find the answers. Perhaps they will find clues within this question (why doesn't it make a difference to catch mets "early") that lead to understanding and perhaps that understanding will lead to treatment that will make all breast cancer - both primary and mets - curable. But I digress.

Debbie Laxague

[Barbara2]

Is there benefit in finding mets early? He told me right from the start (at diagnosis) that when mets are found, treatment will follow, but finding them early does not increase the time of survival. That really puzzled me; it didn't make sence. I wondered, what if a person lets mets go on and on, untreated, then what? Wouldn't you die earlier if the mets were not treated? It would seem so, unless none of the treatments were of benefit to you.

I asked him again the last time I saw him...what is the thought behind finding and treating mets early? He said it is controversial. Some oncs believe finding them earlier is better; that the tumor burden is smaller and easier to manage. He agrees with that logic; that finding it earlier could lead to a longer survival time.

We have read, though, remarks from many people who have posted here, that their oncs do not believe in doing markers. They wait until symptoms show up, then run tests.

I think some of us feel the most comfortable when we believe we are being as aggressive as possible with our with our cancer; that by finding it early, we will benefit. I guess each of us knows what we have to do to cope; and if we feel better using markers, and our oncs agree to letting us do so, then we are more at peace. Everyone has to do their own thing when determining how they can best handle this disease.

Below I have pasted some remarks from Dr. Pegram, that relate to this topic.

Tumor Markers
What is your opinion of having markers done?
I do them. They’re not very good, but I do them once in a while. It’s about like the barometric pressure. “How’s the weather today?” Oh its 760 millimeters of mercury today; well that’s one atmosphere, so that tells you maybe it’s not high or low but it doesn’t tell you the temp, clouds, precip. So that’s exactly the analogy I would make of the tumor markers. They’re a piece of a puzzle; by themselves they’re virtually worthless. But I still give them.

Do positive or negative hormones make a difference?
<O:p

It doesn’t matter. I tend to dismiss the subset analysis because the numbers get so small that you can’t really interpret them.
<O:p

In regards to a health maintenance program when considering scans; how often to do them? Brain scans?

We don’t do any. I wouldn’t do any. Unnecessary radiation exposure. Just get a history, a physical examination and some blood work and that’s it, unless you have symptoms or an abnormal blood test.
<O:p

What about the brain?
Same thing. If you don’t have any symptoms you shouldn’t need a brain scan.



I (Barb) prefer at least a yearly brain scan.<O:p

[hutchibk]

We are learning and proving daily that commonly proposed "guidelines and standards of care" by all kinds of organizations and networks are obsolete and flat out wrong... and we are successfully proving conventionally held wisdom to be wrong, especially here on this site. Our experiences here will prove to be more than "anecdotal." Cancer, the testing of, the treatments of, and results of said treatments, are not one size fits all. IMO, applying that type of "generic" guideline to breast cancer as a whole (when we know there are over 100 types of breast cancers), and to the standard of care post primary disease, is proving to be antiquated thinking. I consider buying into the referenced theory to be like believing statistics about how long I will survive. It should not be taken at face value. Doesn't necessarily apply to the patient in treatment. It is merely theory. Sorry. I do believe in this case (and potentially other cases) the NCCP guidelines should be taken with a grain of salt.

Not to be ugly, but I am reasonably certain that the NCCP does not print the word/sentence "Duh." in their reports and findings. That is based on your own opinion/prejudice about what other people believe to be true, yet butts up against what your research indicates to be true to you.

[AlaskaAngel]

I know the conclusion that was drawn about whether or not catching mets early is based on studies. and I hope my questions about it are not personal.

But even so, the studies can also be based on opinion, depending on how the question is focused.

Again, I have to ask, if you have 2 populations in which treatment makes no difference, (as Barbara wondered too) is it because none of the treatments that are used are of benefit (or are of very little benefit)? If the question is focused only on "does the treatment make any difference if it starts sooner?" then you miss entirely the question "does the treatment itself make any difference?"

I think the topic is very important. We don't have the resources to give everyone who wants or needs extensive and expensive testing and treatment all that we would like to. How can we make the most of what we do have to spread around to make the most difference for the most people?

As I've said before, I tend not to believe that periodic brain MRI's should be routine for Stage I's like me without relevant symptoms. But I don't think that translates to "monitoring with tests to try to detect early mets makes no difference". This discussion started with markers. I believe in periodic regular markers for even those with early stage bc as a way of tracking with less expense than MRI's. Even though for some they don't work, as you can see by some of the comments of others, they are worth doing, for consideration in combination with lab tests like alk-phos, ALT, AST, etc. The HER2 serum test so far is not recommended for early stage, but I think testing with CA 27.29, CA 15-3, and even combining testing with CEA or CA-125 for some does make a real difference if the treatment works.

If treatment actually makes no difference in lengthening life or improving QOL (and even worse, makes QOL poorer), then that is a very, very important piece of information.

If more recent treatment is becoming more successful in a wider group of people, then earlier detection DOES make a real difference.

AlaskaAngel

[tousled1]

Alaska Angel,

You are correct that the HER2 serum test is not approved for early breast cancer. It is however approved for monitoring advanced and Stage IV breast cancer.

[Carolyns]

Why do so many early stage breast cancer treatment studies involve using TMs for follow-up for x number of years?

Carolyn

[fullofbeans]

On the issue of the benefit of detecting mets early:

Just a quick word I agree with Brenda, many guidelines are obsolete. And I agree with AA about asking the right questions.

Debbie it took nearly 20 years for scientists to prove that smoking was linked to lung cancer..some said it was even good for you! It is not because it is not proven that it is not a fact. I am sure that those that got the lung cancer when it was not proven and felt that it was due to their smoking would not have liked to be told in a very patronising way that they were just being silly to think that because it has not be proven..

On this site beware that you are talking to many people that are at the front line of dealing with mets or at high risk of recurrence and we know what artilleries has worked for us. To us that is what matters because we are quite simply talking about our lives and survival these are not "anecdotal" tales to us.

Just like intuitively people thought that inhaling some smoke may no be good for you. I intuitively know that detecting tumours when small will improve my survival for all the reasons mentioned above. Further more you will have less chance to have created another strain within your tumour that will eventually resist any treatment (besides the stem cell theory). As a stage 4 I do not have 10 years to wait for the new official review/studies.

If all we had to do was to read guidelines there would be no need for this site exept for the emotional aspect.

[Sorry for my reactive way of writing but this is your type of attitude Debbie very dismissive that nearly took me to an early grave. This is because I was unconventional and requested a scan+other stuff that I am now NED]

[Hopeful]

I was dx as Stage 1, and my surgeon and my onc differ on this issue. The surgeon has always wanted the markers, the onc has always maintained that for me, it is a waste of time. I have already had one test (Oncotype Dx) which provided a result that has cost me sleep, (although my subsequent research and the fact that Her2+'s were excluded from the TailorX trial, leads me to believe the test is not providing the same info to Her2+'s as it does to Her2-'s), the fact is that it still causes me anxiety that I would not have had if not for the test. I feel the same way about TMs. The issue to me is that they are not completely reliable for everyone. If they were, then the decision to use them would be a no-brainer. Since they are not, I do not want to be in a position of having additional anxiety and a battery of tests based on a marker level that may serve no purpose other than to make me miss time from work and increase my radiation exposure. Then, if the tests are all still negative, there remains the anxiety that something IS still there that has not been able to be found. Dealing with the mental challenge of this disease is in some ways more difficult than dealing with the physical challenge. I think we all need to approach this issue from the perspective of what gives us greatest peace of mind. If Stage 1's want this testing, and their doctors agree, then blessings and best of luck to them. Until there are fewer false negatives and false positives with TM's for my disease, I am satisfied to rely on the current NCCN guidelines.

Hopeful

[Grace]

Hopeful and I have had the same uncomfortable experience, although mine was with tumor markers, both CA 27-29 and HER2 Bayer. Very small cancer, Stage 1A, Grade 2, 20% proliferation rate. But then I opened Pandora's box asking for tumor markers to be run and found that both of the above markers were above the cut-off number. It didn't change my treatment options, but it did make me view every ache and pain as a recurrence. I've regretted for more than a year now having those markers run and will always regret it, as I've had a year of unnecessary anxiety. So far, knock wood, I've had no recurrence and my markers have gone down, although slowly. I'm not taking sides in this dispute as we each must do what works best for us, even if in some cases it doesn't follow national guidelines, but I know that if anyone at Stage 1 were to ask me my advice regarding tumor markers, I'd suggest she run the other way.

[Grace]

Carolyn, with respect to your question, I suspect the reason for taking tumor markers in studies that concern early breast cancer is to use that information to come up with guidelines. If these studies should determine that tumor markers hold a clue to future BC activity this information will find itself incorporated into national guidelines, but I don't believe we can infer from the taking of tumor markers in studies that it's a recommendation for the general population. What finally made me relax about my elevated markers was Dr. Pegram's statements about same, which were posted a few months ago in an earlier discussion.

[Mary Anne in TX]

You know, we're as different as our BCs are, aren't we! I keep thinking of the 1 in 15 who survived the first trial of herceptin and remember her saying that she was stronger than the rest. I guess I believe they will keep finding more appropriate meds for us. I just want this ol' body in as good a shape as possible when they do! I still want to see my grandkids graduate from college. Our mental stress, or more importantly the lack thereof, seems to be so very important to our immune system and our general well being. Maybe I do the markers for that reason, but I also think they are a guide for some of us. I do the labs for all the liver, kidney, etc each time too and find them as helpful as the marker. The truth is I'm far more likely to die suddenly of a stroke (a family thing) than of BC, but want to do my part, even in the unvarifiable areas (they are still learning, thank God). But, if I didn't have the support that I do, I'm not sure that I would want to know all that stuff. I'm often tempted to just "move on" and believe what so many friends would have me believe....that I'm done with all that!!! I like that we're so different and do things so unlike each other! Makes for better learning. Thanks to all for being so bold and different! ma

[saleboat]

I don't really have anything to add to this thread, but just add my two cents-- I have asked my Onc, who does do TMs, to not, under any circumstance, let me know what they are...unless there's a reason to worry, I just don't want to know. I've decided that it her job to worry, it is my job to get back to living my life. It cedes a certain amount of control over what is, to my mind, a diagnosis that defies control. If I knew the TM numbers, I would Google myself to distraction and the anxiety would overwhelm me.

Just an alternative approach for those who do TMs.

[caya]

Saleboat and Grace,

I am with the two of you on this one. Being stage 1, I really do not want to get aggravated with TMs etc. unless there is a need. My onc. does blood work and the onc. nurse will tell me - your blood work was very good, or something to that effect. I would be all over the internet too, and I think I will tell my onc. what you told yours, - for me, ignorance is bliss - again, not for everyone, but being stage 1, and of course unless there are symptoms present, I just don't want to drive myself CRAZY.

I like your comment Saleboat that it is the onc.'s job to worry. I told my onc. it is his job to make me get old - and I intend to hold him to it.

all the best
caya

[Soccermom]

WoW...I certainly stirred things up here! I like the fact that we have a forum where we (specifically Her2) can debate and discuss these things. As many have said since there are so many types of breast cancer the "one size fits all" approach will hopoefully be a thing of the past,soon. In regards to national associations (ACS,ASCO,NCCN) recommendations I find them to be "one size fits all" and actually may do a disservice to those who are newly diagnosed and unaware of the atributes of their particular form of breast cancer. That said , I would imagine that is why we all must have Oncologists/Docs that we have complete and total faith in...so that we get our recommendations from them and not a "clearinghouse" type website.
I appreciate all of you who contirbute to this conversation which should remain ongoing until we have A CURE!
With gratitude,Marcia

[dlaxague]

Gee, this list has always seemed so friendly. Is that only if everyone agrees with each other? Is there no place here for polite disagreement?

Brenda and FoB's perception of my post that disagreed with them, and which included NCCN information (one of the most-respected entities and guides for cancer treatment in the country), was that I was being "disdainful, self-righteous, patronizing, and dismissive".

I've re-read my post several times and do not find those tones to it. It was not written with the intention to have those tones to it. I know that with email, it can be difficult to interpret tone. I tend to speak plainly. I'm not particularly warm and fluffy. But I don't speak dismissively. If that was how I sounded, I apologize. But I do not apologize for the content, which was a truth. I'll concede that it may not be your personal truth and lord knows we are all entitled to our own truths - but it's not an anecdote nor an emotion-ridden bit of information. It's the national guidelines.

My "duh" comment seems to have rankled considerably. The "duh" was in reference to the study's conclusion that TM's could herald mets before symptoms appeared. I think that fact is known by all and is not in dispute - not in this thread, not anywhere. Hence my "duh" comment - in my opinion, they did a study (and spent precious research dollars) to prove something that was already known; TM's can pick up mets before symptoms announce them. Yeah, we know that. DUH. To me, that's the correct use of the comment "duh". We knew that, why did they waste time on a study to say it again? I didn't say "duh" about anything anyone on the list said.

Has anyone read "The Four Agreements" by Don Miguel Ruiz? It's an amazing book - so simple. A good way to live life, and to correspond on email lists and message boards. I'd be glad to post the short version here, if anyone's interested.

Respectfully,
Debbie Laxague

[dlaxague]

Alaska Angel said:
Again, I have to ask, if you have 2 populations in which treatment makes no difference, (as Barbara wondered too) is it because none of the treatments that are used are of benefit (or are of very little benefit)? If the question is focused only on "does the treatment make any difference if it starts sooner?" then you miss entirely the question "does the treatment itself make any difference?"

Debbie now: Hi AA, nice to be having a discussion again. I'm not sure I'm understanding the question. It seems to me to be two entirely different questions. I've beaten the first one to death and had better not go there again.

The second one, "does the treatment itself make any difference?" is a question only answered with hindsight, right? Usually yes, the treatment makes a difference. Sometimes a huge, near-miraculous difference, sometimes a small one, sometimes (alas) apparently not any difference.

This working/not working has to do with some things that we know (HER2, ERPR, etc) and probably many many things that we do not (yet) know. In general, each successive successful treatment works less well, or at least less long.

In fact, relevant to this thread, it could be argued (and is currently being argued on the bcmets list by those much more knowledgeable than me) that there is benefit to waiting for symptoms of progression even with mets, rather than relying on TM's or scans, to know when to change treatments. This is not true when a treatment is causing significant side effects because it's best to abandon it soonest so as not to cause suffering or inflict damage while providing no benefit. But metastatic disease that does initially respond to treatment can be left unmonitored except for symptom report, just as the guidelines recommend for after primary disease. Why? Because that is the best way to extend each "tool". Some women with mets look at their options as tools in a toolbox. They prefer not to use each tool until they are absolutely forced to do so, because that way the limited supply of tools will last longer. This is not an approach that suits everyone's temperament, but it's one perfectly reasonable approach.

Debbie Laxague

[AlaskaAngel]

I don’t like to think that anyone who is polite would not find this site worthwhile. I especially value the thoughts of those who have spent time and effort to dig into the mysteries of cancer and are willing to take on controversial subjects.

Unfortunately, cancer really bites hard, and most of the time no one is around to explain the pieces or answer the confusing questions that we have at the time when we need to know the answers most. We get banged up trying to find a way to intelligently and civilly work our way through it. In my opinion, those who have mets early on are working with a very different clock than most of the rest of us are. They learn fast that survival is much more dependent on realizing internally that the standard guidelines are only a rough attempt to guide treatment that is known not to work very well for many if not most, especially for mets.

This is why some of the most remarkable survivors are still here with us. I’m talking about the women who didn’t follow the guidelines and instead are finding ways to be part of the development of better treatments. Those kinds of choices are hard to make, and there are neither certainty nor impartial professional mentors to cuddle them through it. They have had to “break” their mind and go against the advice of the “national guidelines”, and still live with the natural doubts they might have about doing that. There is little if any support at all for them. They’ve had to get past that. Whether their choices prove to be right or wrong, whether they live 6 months or 30 years, the guidelines are based on research done years ago and as one mentioned, their clock isn’t going to let them live by the guidelines.

If I were one of them, it would be important to try to tell that story so that others can benefit and find their way through it all with less pain than they did. It isn’t just a matter of them by chance beating the odds.

As anyone who has been on this site over the years can verify, a short fuse for me has been the way that the Lost Regiment of HER2’s were treated while the “experts” stampeded by us to offer Herceptin to every newly diagnosed HER2. THERE WERE NO GUIDELINES FOR US, just DEAD SILENCE by the “experts”. You will find a number of the Lost Regiment here took it upon themselves to push themselves and their oncs to start Herceptin anyway. I too believe in civility and would not want anyone who has participated in the discussion to be uncomfortable, especially not someone who has so much to contribute and has contributed so much in the past.

AlaskaAngel

[hutchibk]

I will just simply have to agree to disagree with you, Debbie. Respectfully.
However:
1. the referenced 'abstract' that at the beginning of the thread that started this discussion, and the NCCN guidelines that you refer to, are not as clear as you would make them out to be, as they are written in very scientific terms and it is difficult to translate into laymen's terms. You took the liberty of translating for us laymen/women using your "language", and your perspective... which by default carried your opinion layered in it. Maybe it was unintended and you don't realize the unwavering absoluteness with which you presented it.
2. The Page 75 "tumor marker" recommendations from the 2007 NCCN Clinical Practice guidelines for Breast Cancer are pretty antiquated as they reference "#177. Bast RC, Jr., Ravdin P, Hayes DF, et al. 2000 update of recommendations for the use of tumor markers in breast and colorectal cancer: clinical practice guidelines of the American Society of Clinical Oncology. J Clin Oncol. 2001;19:1865-1878." 2000 was almost 8 years ago. A lot has changed since then. It seems to me to be absolutely black or white for you that the research presented is the only truth and the only possibility. OK. So be it. I see it entirely differently and luckily so does my oncologist. I am relieved that he doesn't follow textbook guidelines.
3. You have suggested that we are being unfriendly because we aren't willing to buy into the referenced guidelines hook, line, and sinker. You suggest that we can't see "the truth" as you presented it. I believe we are not at all being unfriendly. Disagreement can be uncomfortable, true. Some of us simply disagree (and are living proof otherwise) with the presented absoluteness from guidelines that use an 8 year old study as their basis for said recommendation. It is my best guess that more current studies will appear before the NCCN in not too distant years that will suggest that they reconsider that recommendation...
4. I can find numerous clinical oncs, if I were to put my mind and time to it, (including mine) who would love to expound on how and why the theoretical guideline you reference is outdated and obsolete thinking.
5. I have read the Four Agreements. I agree it is a good book with good insight.

I will leave it at that, and as I said, I will agree to disagree about this topic and with the NCCN recommendations about following tumor markers post primary DX and treatment.

[Carolyns]

Debbie,

You made specific statements that I found to be untrue in my experience. I responded to that and below is one of the comments from your post:

"The article that started this thread was about tumor markers after primary disease, and so replies from those with mets are irrelevant. Interesting, but irrelevant. And did you notice that the article did not address benefit from finding mets sooner with tumor markers - it simply said that it was possible to do so. Duh. But why would we want to do that, if there's no benefit in it?"

No benefit? I am not in a wheel chair. I consider that a BIG benefit. Will I live longer (?) - well upright anyway. Markers are not for everyone but they worked for me.

I think that I could have considered your comment above to mean that my reply / experience was irrelevant as a mets girl. I think anytime you state that others comments are irrelevant you will get some push back...I hope so anyway. I guess I could have done that or even considered it to be unfriendly or insensitive. I didn't because I try not to judge. I can not interpret your intention just state my experience...no judgement on my side.

That is my personal story...stage I to stage IV with TMs as a part of the puzzle.

Carolyn

[StephN]

OK - here is where I had trouble with the study Marcia posted and the NCCN's guidelines NOT meshing. The study is from 1999 and the referenced guidelines are from 2000.

Here is the study's conclusion:
In conclusion, tumor markers are useful tools for the early diagnosis of metastases, being the first sign of recurrence in 69.5% of patients with relapse (76.3% in patients with metastases).

Did not anyone on the guidelines committee at the NCCN READ that study?? Here is where I get to say DUH! Do these numbers not have any meaning in forming GUIDELINES for taking markers?

My diagnosis was in 2000 - AFTER the study was published. My med onc is highly informed and told me then he would be looking at tumor markers since I had an aggressive form of the disease. I was fine with that, as I already had friends who were then in stage IV and knew I was a high risk Stage II patient. I learned early on to look the beast in the eye (with little or no support, I might add).

Maybe one study was not enough for the NCCN to change a guideline, but it is useful if our doctors are aware of the outcomes of these studies and apply the theories of the STUDIES rather than any "one size fits all" guideline.

Just as we are WAY past the "give everyone with BC the same scorched earth drugs," any thoughtful oncologist is WAY past using the same national guidelines for ALL his patients. Fortunately for me, my onc was THINKING of me as an individual patient in 2000, rather than just another hash mark in a statistic.

The BENEFIT to me is that I am alive to be responding to this thread. As well as one more "hash mark" to the good of early surveillance.

[AlaskaAngel]

The discussion is pretty sensitive. I'm guessing, but I think the real source of confusion is that the guidelines are based on general bc, whereas this particular forum is heavily made up of high-risk bc patients whose cancers usually act very differently than most other general bc cancers.

At any rate... having had discussions with Deb L in the past where we have at times disagreed intensely but without rancor, I would miss her a lot. She has spent time learning about the more complex details about bc and has a lot of knowledge that she shares here in good faith.

AlaskaAngel

[dlaxague]

StephN said: OK - here is where I had trouble with the study Marcia posted and the NCCN's guidelines NOT meshing. The study is from 1999 and the referenced guidelines are from 2000.

Debbie now: The study about tumor markers said that markers were useful in detecting mets before symptoms. Which they are - no dispute. But other studies have shown that there is no benefit to doing that, and that's what the guidelines are based on. Mets detected by symptoms respond just as well to treatment as those detected before symptoms, say the studies, and the NCCN. QOL is also equal in the two groups, per the NCCN studies (which I think are updated as of 2007). There is no way to know if this is true on an individual basis. You can't say that because you had your mets detected with TM's, and did well, that it was TM's that made the difference. You can think that, and are perfectly entitled to do so, but you cannot prove it. No more than someone who didn't do well can blame their situation on the TM's or lack of them. These kinds of things only show up in large groups, not in individuals, and when well-done large studies show significant results, that's considered proof. For an example near to our hearts (hah, no pun intended, but it happened anyway), herceptin for adjuvant treatment did not happen until large studies were able to show its benefit. When we allow emotion and anecdote to rule, we risk getting into trouble and doing harm, as happened with the bone marrow transplant fiasco. Have you read the book just out about that? False Hope, by Richard Rettig. I haven't but am eager to do so.

See, I have a problem with rambling. Back to the issue at hand: are there subgroups for whom this follow-up recommendation is not true, as several have insisted? We don't know, but I can't really think of a reason why that would be true. For treatment - yes there are definitely subgroups that respond differently, many of which we probably don't even know about yet. But this basic primary follow-up question seems more likely to have one answer.

Something not much mentioned in this discussion except by a few individuals who experienced it is the cost to QOL in anxiety related to close surveilance, and also to false positives that result in even more testing.

(Wouldn't it be interesting to know how long, on average, it would take a tumor marker-detected met to produce symptoms - probably not that long, which could be why there's no difference - or it could be that response is response, and has not much to do with bulk. That often seems to be the case).

Alaska Angel, now I see why that's your name (smile). It's good talk to you again. Thanks for staying level-headed and kind.

As to translating to laymen's language, that's always hard. But both the abstract's conclusion and the NCCN guidelines are pretty understandable and don't need translation. I'll quote them and see if you don't agree:

The study that begins this thread sums up their results: " In conclusion, tumor markers are useful tools for the early diagnosis of metastases, being the first sign of recurrence in 69.5% of patients with relapse (76.3% in patients with metastases)."

And the NCCN guidelines, one short paragraph (I remember now trying to do this before here, and formatting gets all messed up - sorry):

Interval history and physical exam every 4-6 mo
for 5 y, then every 12 mo
Mammogram every 12 mo (and 6-12 mo post-RT
if breast conserved) (category 2B)
Women on tamoxifen: annual gynecologic
assessment every 12 mo if uterus present
Women on an aromatase inhibitor or who
experience ovarian failure secondary to
treatment should have monitoring of bone health
Assess and encourage adherence to adjuvant
hormonal therapy.

Enough,
Debbie

[AlaskaAngel]

Hi Deb,

I am not sure I understand entirely....

I think the guidelines are based on a large group of people who have bc, most of whom will never benefit from markers because most would never recur. So if the idea here is that most folks with bc do not benefit from having markers in particular done, then you would get a much smaller bah humbug out of me (although you might still get one).

And the last I heard, HER2 still isn't shown as being a defined risk factor in Adjuvant, etc. But since the greatest risk for reccurrence with HER2's initially is in the first 2 years (and I don't think that is true for the broader group of all bc), since there is no guideline that is based on studies for HER2s alone, wouldn't it make sense to use markers for HER2's for the first 2 years at least?

A.A.

[dlaxague]

Hi Alaska Angel,

I'd take this offlist as I don't think many are still interested, but I can't seem to find how to do that. I also can't figure out how to make this conversational, with your words and mine clearly differentiated. I've put >> before your words, and nothing before mine.

>>I think the guidelines are based on a large group of people who have bc, most of whom will never benefit from markers because most would never recur.

So, a semi-humbug from you? Laughing! I don't think it has anything to do with those who don't recur. The studies upon which the guidelines are based address those who do recur, and they find no difference between those whose recurrence is detected by scans/markers or by symptoms. I'm beginning to feel broken record-ish.

>>>And the last I heard, HER2 still isn't shown as being a defined risk factor in Adjuvant, etc.

I haven't been to "Adjuvant!" for awhile, but there used to be a discussion about HER2 and you could add to the risk by going to "prognostic factors", I think, and put whatever you thought HER2 increased the risk by, although I think there was some suggestion that it was by less than 2-fold. But now with adjuvant Herceptin, that's a moot point. (those of us who did not get Herceptin will never know what the increase to risk was for us, I guess - although - maybe it WILL be in Adjuvant, when the benefit of adjuvant Herceptin is shown - showing up as as opposed to no Herceptin, like he does for the various chemos, vs none - hmmm). Anyway, I assume he's waiting for more survival stats for Herceptin's adjuvant use, but that's just a guess. Who goes to SABCS? Peter Ravdin's pretty advocate-friendly, we could ask him when he'll put HER2 in Adjuvant!.

>>But since the greatest risk for reccurrence with HER2's initially is in the first 2 years (and I don't think that is true for the broader group of all bc), since there is no guideline that is based on studies for HER2s alone, wouldn't it make sense to use markers for HER2's for the first 2 years at least?

Well, hmm. I don't think it's just HER2 that has higher, earlier risk, although you're right it's not ALL bc. I think that basal/triple-negative is as early/high as HER2, if not more-so now with Herceptin in the picture for adjuvant HER2+. And any ERPR negative tends to recur earlier (although again, those graphs are from pre adjuvant herceptin days). It fascinates me to look at these graphs of recurrence timing but what I've noticed is that they tend to stratify by only one detail - ERPR, or HER2, or triple negative - but rarely by, say both ERPR and HER2.

And again, if the principal holds, I don't know why it would be any different for an early vs. late recurrence. Scans/markers improve outcome, or they don't - regardless of when the recurrence happens. Or maybe not. In fact, it could be argued that earlier recurrences are more likely to be faster-growing (more aggressive) and so the interval between being able to pick them up with scans/markers, before symptoms might be quite short. If that's true (and I'm only speculating that it might be), then IF scan/marker detection made a difference, you'd have to be doing them pretty darn often to benefit from that difference.

I notice that there are two meaning to "early" mets. "Early", as when relatively small and/or not causing symptoms. Or "early" as in within the first few years. No point to that noticing - just an observation of one place we might misunderstand ourselves.

This has been a fascinating, though sometimes painful, discussion. I'm wondering how many on this list, post-adjuvant primary treatment, did use scans or markers as part of their routine (asymptomatic) follow up. I did not, except once and that was without my knowledge/understanding.

Debbie Laxague

[AlaskaAngel]

I have to admit, my last entry wasn't my best!

My personal interest in this is broader, though, than the narrow focus that comes with accepting rough guidelines in the attempt to be entirely objective in how to best deal with the disease. The discussion ended up being limited to considering only what benefits there are in terms of lengthening survival. Perhaps because I am able to see that the guidelines are so rough, I don't see them as being terribly objectively important. For example, if you know by way of markers that the disease has returned, even if you happen not to gain longer survival, and you have limited resources, you will have more choices about how to spend them in what time is left, rather than finding out late in the game. As we both could see from the discussion, some want to know and some don't, without either being "right" or "wrong". But it does matter that markers can offer some people the right to know. It can offer them the right to decide on making a change in treatment as well -- and for some that might mean starting Herceptin that they have never had, or doing Taxol because of the recent knowledge that it works much better for a certain group. It can mean deciding to STOP treatment, if one feels QOL would provide more benefit, where without the markers one might have been more inclined to continue suffering treatment that wasn't working, all the time wasting resources that aren't helping.

So I'm not sure the points about being "unemotional" and "factual" and "evidence-based" in applying what are only rough guidelines in the first place is actually all that meaningful.

With all the false trails we have been herded toward (those HER2's who were put on tamoxifen when it was deadly for them, those who should have gotten Taxol and didn't, those who were given Adriamycin when it wasn't helpful due to TOPO II, the resulting leukemias, and any further mutations caused by the carcinogenic chemos, etc., etc., the question about the effectiveness of treatment is still open. Is doing markers ineffective, in prolonging survival, or was the treatment ineffective regardless of markers or no markers?

AlaskaAngel

[Becky]

I am always into a lively discussion and I am rather late in the game here.

As far as markers are concerned, although they may not work for everybody, they do work 69% of the time (at least that number was reported somewhere in this thread). This is a non invasive, radiation free way of knowing that something is going on. I am not a simple person but I am a very logical person so... I do think that finding mets as early as possible is good for a number of reasons. First, the tumor(s) would be smaller. To me, it would seem that cleaning a pan with just alittle burned on food is easier than a pan with a ton of encrustation. Likewise, stepping on a bug is easier than killing a lion. One liver met can be radio abalated and then get Herceptin (lets say). A fully loaded liver needs a lot of guns. Also, a fully loaded liver can be causing life threatening symptoms. Some tumors, in the wrong location, can be cutting off the blood supply to the liver causing portions to die (and all the toxic reactions that occur because of tissue death). Symptoms are there for a reason and in the case of mets, none of those reasons are good. It is not like the flu where the symptoms are actually the result of your body fighting off the bug and winning. Symptoms from mets are the result of your body losing.

When it comes to the brain, I think early detection is even more important. You can try less invasive treatments (Tykerb, certain chemos, gamma or cyber knife) before doing WBR (of which you usually can only do once). I feel very strongly about the brain because the brain is who you are.

Just as detecting cancer as early as possible is important for the first go around, it is just as important in the second go around imho. Before tumors are so big or abundant that they start shedding to even more locations - including the brain!

As Stage 2A I got baseline CTs, bone scan and a year out, a brain MRI. Now we know what's there and if I should need scans again because of markers or symptoms, if something new is there, it probably isn't good news. But I do markers. Are they a little scary? Yes they are. Once mine went from 11 to 21. In time, I learned that is my "flip flop" window with my numbers always going up and down in that window. Do I get anxious? Yes - I just had another breast lump that was analyzed to death and was determined a cyst (which by that time the lump was already gone). I found it during my monthly breast exam. Do I get scared to do the monthly? YES, YES, YES but I DO them. Cancer and its vigiliante aftermath is scary. Very, very scary so we must be brave and sometimes in my case - you have to pretend to be brave and do all the brave things - (what I mean by this is if I waited just 9 days for my lump, it would have disappeared on its own). And if you don't want to know, I suppose that's fine. But do you want to live? I think most do so you should want to know so sometimes, you have to walk into an even darker and scarier place - the time where you wait... wait for the marker result, wait for the scan result, wait the days until the scheduled mammogram. Time is not our friend and time is also our best friend (2 years out NED, 5 years out NED). Fear is not our friend but fear is also our best friend (get that lump checked, don't let it go....).

In all, bc survivors (and regardless of our individual status - we are all survivors) are a unique bunch. You all are the best bunch. We are all dressed up to go to the beautiful party of life everyday but underneath our gowns, we are wearing bullet proof vests!

Party on!

[Grace]

One more for good measure.

I read on this site about tumor markers in July 2006, including HER2 Bayer (Gina), not too long after surgery. I asked for the markers to be run, against advice of my oncologist, but he ran them nonetheless. His reasoning was the same as that of many oncologists: too many false positives and false negatives, and mainly, he said, because of the anxiety it provokes in patients.

My 27-29 first time in August 2006 was 41.5; a week later it was 45, and I was scared silly. My HER2 Bayer was 16. My other markers were normal. We had decided just to do herceptin for a year but I decided, on my own, to do taxol and carboplatin. I had a severe reaction to chemo, and still have serious issues with memory, neuropathy, etc. I quit after two sessions but continued with herceptin until August 7 of this year. During the year, I spent most of my days thinking of a recurrence, worrying constantly, all because of my high markers. I am a logical person most times, but not about BC. I finally got some peace in April, after reading Dr. Pegram's comments concerning markers, and began to write and live again. During that year, I had a urinary tract infection, which I thought was cancer; dizzyness, thought it was brain mets; shortness of breath, thought it was lug mets. So in that year, I had a PET scan, a CT lung scan, an MRI of the brain, with contrast (with unfortunate burns on my arm), an echo stress test, and, of course, many MUGA scans.

I still regret having the markers run. I was rather comfortable with my prognosis after surgery and probably would have had a good year, with some anxiety but not constant worry. My oncologist, who works only with breast cancer patients in a very large New York cancer center, told me that only two of his patients have had the HER2 test run. The other patient has had rising numbers for more than a year, and to quote him--"they've scanned everything and can't find anything." My markers did go down, in particular my HER2 marker (to 8), and the decrease (this August) coincided with severe breathing problems, so I wonder now if herceptin has damaged my heart, as since herceptin I developed a pericardial effusion and some issues with the right ventricle. I don't know the number from my last 27-29, because I didn't ask, and I don't want to know, but I suspect it's still in the low 30's, which is higher than that of many women on this site who are Stage IV. Is it possible that I had and have cancer cells lurking--possibly--but since my treatment was the same for the year (herceptin), having the markers run made no difference to my physical survival. I have decided, after much angst, not to have the markers run again. If I have persistent symptoms, I will ask for scans but I will try to live without the constant anxiety that I experienced in the past year.

Each of us must make her own decision on markers, hopefully with self-knowledge. If you're a worrier, I suggest you forego the markers and scans if you're not having symptoms. I agree with Debbie on her main point. Individual stories are ancedotal, not science. The main reason I visit this board is to hear the stories, particularly the good ones, as they give me hope that I'll be around for a long while and as a bonus I've met some very nice people here. We can agree to disagree, can't we?

[BonnieR]

Grace, I think we are "mirror-ing" each other again!!
I cannot add to the analytical content of this thread but I can say that the CA 27.29 markers are beginning to add to my anxiety level. They are run routinely each time I have lab work prior to chemo. I did not request them. They have gone up each time although are still in the normal range. Once, my treatment nurse proudly pointed out to me that the number was within normal limits. But it was higher than the time before!!

I have done my own little unscientific survey about the CA27.29 test. I have talked to various national cancer organizations, a pathologist, done reading. One nurse/researcher for ACS said she works in an office with 8 onclogists. Half of them order the test and half do not.
My simplistic understanding of this test is that everyone has these markers to some degree. Even someone without any history of cancer. The numbers fluctuate. They would be cause for concern if they made a sudden and dramatic rise.
My numbers are also causing me a niggling anxiety since they have continued to rise during chemo and now my onc has discontinued all but Herceptin. This might be a case of "a little knowledge is a dangerous thing". For me.

[Grace]

Dear Bonnie,

Please don't worry. Cancer markers can increase because of the chemo treatment. Mine did and went down when I was off chemo. And lots of other conditions, mainly benign, can cause high markers, ovarian cysts, etc., but you probably know this. Some women may carry fetal cells from a previous pregnancy or miscarriage (I had two misses), which could cause a rise in markers. As long as your markers are in normal range you should be fine--numbers go up and down for lots of reasons. I kept the results of all blood work over the years (didn't even read most of them at the time as everything was within normal range). Now since BC I've reviewed them, and find that the numbers jump all over the place, but all are in the normal range.

I'm glad you're off chemo. You'll do great on herceptin; almost all of us do.

[StephN]

Lots of good input here - I think there is still an interest in this thread.

I want to add that tumor marker CA27-29 was drawn in my case as I began adjuvent chemo in a clinical trial. It was not my doing to get them in the first place.
Whether I got the markers or not had NOTHING to do with any national guidelines. That labwork was part of the trial criteria.

My next chemo was also part of a trial and again the markers were included. The explanation I recall from that time is that these trials were for high risk patients and therefore the markers were included. I am going back to 2000/2001.

While on Taxotere (second trial) my marker shot up to over 60 and I was scared out of my mind. My onc said not to worry that this happens all the time and does not mean that disease is getting worse.

Because of that high reading, my onc wanted to keep checking my marker frequently to make sure that it would go down. The number did go down to nearly normal near the end of my radiation. Then into normal range by 3 months after completing the chemos. My onc wanted to watch that number and see if it would stabilize.

Well, the number did not stabilize, as the next 3-month check showed it up to 57. At that point my raging liver mets were confirmed. I had a PET scan a few months earlier as that was also part of a trial - it was negative, so those mets got going after my radiation.

I hope this sheds some light on why some of us have been followed with markers once they were shown to be indicative of our disease path.

Since I am stage IV, the markers have become part of the routine. I do not obssess over finding out my numbers each time. I know that someone will let me know if there is any change. The Ca 27-29 number is stable between 17 and 24 for over five years now. The CEA rose an fell with my brain mets. The now very low reading gives me peace of mind and my scans are not a worry.

One more thought regarding scans. Having had dozens of brain MRIs in the last 3 years, I am becoming impervious to those as well. I had a nice chat with my rad onc yesterday who said that my results have been good and he thinks I can move from 3 to 4 month interval between scans now. He thought that I would be really happy to have that extra month without the scan anxiety. I answered that by now I am not giving in to "inscanity" just giving it over to the Universe and what will be will be. He looked a bit surprised, but said that is a way to have confidence in my body again. My reply was to agree that I feel "out of the woods" even though I know things could change.

What I say here is my personal experience, and we will all go through a time of getting to know our NEW selves (after bc) before we can get to a place of feeling comfortable with our followup plans.

Being on "permanant followup" I just have had to accept that and not worry about the cost to my insurance provider of keeping me alive. I went through my million dollar lifetime cap last summer. But now have a med-advantage program. I can't help how much my treatments and surgeries cost as there IS an expensive drug that works for me. There has NEVER been a question of Quality of Life for me. LIFE was the goal and the quality would (and has) follow if I was allowed to live.

P.S. Thanks to Kelly below in reminding us about not having caffeine prior to the markers being drawn. I have been off caffeine since becoming stage IV. Meaning I rarely drink coffee and use herbal teas and NO Coke or Pepsi.

[KellyA]

Hey there- just a little side note- I know there was a thread on this somewhere, but I can't find it. A close friend had markers drawn and they were elevated at 42. I read the thread on caffine before blood draws and how it can raise markers. She had had a double expresso before the draw. I called her with the info, and on the retake, with no caffine for 24 hours, the number dropped to 21. Don't know whether it is a coincidence or not, but I felt that it was interesting FYI since the thread I read supported this.

Otherwise, I think I'm gonna stay out of this discussion. :-)

Love you all,
Kelly

[Bev]

Wow, spent a long time reading this whole thread. Where was I? My onc is also of the don't test don't tell ilk. Not testing gives me anxiety too! I had to grill the nurses to give me numbers the doc wouldn't give. I can relate to numbers. It's not like we are too delicate to handle facts.

The study data is old!! If TM's make you feel better, by all means get er done. I do also believe things can be true even if they haven't engineered a scientific study to prove it yet.

Hope to be here when it all gets sorted out. I know it will. BB

[Margerie]

I think part of the problem, at least for me, is the mind shift between the stress on early detection of an initial diagnosis of bc and then accepting that after initial treatment- what will be, will be as far as mets are concerned. I mean it has got to be better to catch them early right? And detecting them earlier than symptoms present will not improve survival? I know that scientifically this is what is "proven", but it just doesn't gel completely. Are they completely different beasts? The traveling breast cancer cell is the enemy in both cases. We hope we caught it in time for Stage I-III. We know we didn't at Stage 4. Are these studies done with the newer stats for newer therapies for Stage 4? I guess I am just an optimist. They also have "proven" that mammograms don't pan out for women under 40. It is not financially sound to screen all women every year under 40 because the mammos are not as accurate and the additional radiation unwarranted. But if I was told to get a mammo every year, or a breast MRI and/or u/s, after my initial mammo, which was "disease-free" at age 35 due to lump, they would have caught my beast long before it was stage IIIA- 2.5 years and another lump later. I vote for changing the maintenance guidelines for high risk for recurrance bc patients. Defined by me as node + and or her2+. Probably triple neg too.

I ended up with a wonderful oncologist and we meshed well philosophy-wise in this business. It was interesting to me that he did not recommend any scans at initial diagnosis other than a chest x-ray. He said because he feels that if anything turns up on a scan, the tendency is to under-treat. I was young and we decided to go all out as far as treatment and scanned after chemo. Thankfully NED has been my friend for 2 years since diagnosis. We will do scans periodically until 3 years post-dx. We do run CA 27.29 at every blood test every 9-12 weeks. I don't get caught up in the numbers. They will tell me if they double in the normal range or march on to the high range. I don't know how much this test costs my insurance, in addition to normal blood tests, but I imagine it is no more than a couple hundred dollars every 3-4 months. If it will help catch anything in it's infancy- I am all for it. I do know that it is no guarantee either. Actually bc is a big fat lesson in no guarantees- isn't it?

I do think this is a great discussion and hope all of us are able to discuss the pros and cons of TM's and scans with our oncs.

[Soccermom]

KellyA,
Its this thread Re: caffeine..last post MaryAnne Tx

http://her2support.org/vbulletin/showthread.php?t=29853&highlight=caffeine

Hugs,Marcia

[dlaxague]

http://patients.uptodate.com/topic.asp?file=breastcn/19564#19

'Looks interesting - look at the topics of discussion on the left side. It makes my mouth (mind?) water!

Also notice the clickable link/reference to the 2006 ASCO f/u guidelines, in the body text that we're allowed to see, which seem the same as the NCCN ones that I referenced.

Debbie Laxague

[Gina]

are you an oncologist??? LOL hee hee hee hee

Seriously, folks, if any of you out there are her-2 positive at any stage, at any point in the disease, do not heed Debbie's comments.

Regular checking the tumor markers is just plain common sense, regardless of status. Her-2 mediated disease is very aggressive, and very sneaky. In the 10 years I have lived with this horrible illness, I have seen many gals who went through the first primary stuff and may have remained NED even up to 4 or 5 years, but then, the disease returned with a vengence, and I watched many die--especially in the early years-- because by the time they found out, there was not a whole lot that could be done. That is why the myth of no prolonging of survival got started in the first place. And as for NO added quality of life....surely, Debbie, you are out to lunch. Have you not read a single post on this site???!!!!!!!

At least now in the last few years especially since the wider knowledge of Dr. Carney's serum her-2 test has become available, we finally have something like an early warning detection system (tumor markers, regular scans, even ordinary bloodwork provides early clues to return of the beast), and although I agree it is FAR from perfect and in some rare cases, not accurate enough, it is still far better than the NOTHING we had before.

Also, if you have her-2 already, you need to adopt this quote into your life: "IT IS BETTER TO KNOW EVEN A DARK AND TERRIBLE TRUTH than to not know it".

Sorry to be so upset over Debbie's comment, but her words could cause her-2 folks to die needlessly and that is NOT what we are about on this site. Our goal is to get the word out to give every person infected with her-2 every tool possible in her arsenal and to support them every way we can.

Sincerely,
Gina

[Grace]

Gina,

Go fly a kite! Please!

[Margerie]

Well, I read the "Up to Date" article. Their license agreement prevents me from posting the article. They do conclude that there is no quality of life benefit from a more intensive surveillance strategy as compared to regular surveillance (physical exams and mammography) alone. BUT the two hallmark studies they quote were both done in 1994:

Impact of follow-up testing on survival and health-related quality of life in breast cancer patients. A multi-center randomized controlled trial. The GIVIO Investigators. JAMA 1994; 271:1587.

Rosselli Del Turco, M, Palli, D, Cariddi, A, et al. Intensive diagnostic follow-up after treatment of primary breast cancer. JAMA 1994; 271:1593.

These were the 2 main studies, there were other smaller studies with dates from 1985 to 2005 (one study).

They do note that there was a study on 9,000 bc patients that demonstrated that elevated tumor markers can predict relapse with a lead time of 5-6 months over clinical symptoms. They debated whether or not the 5-6 months notice was a pro or a con. My feeling is the newest treatments can make use of the earliest detection for prolonged survival and QOL. None of these studies focused on Her2+ patients.

[Gina]

Hi, Grace,

We know each other from way back so I take no malice at your comment and I realize that this thread has been a bit heated. I also publically apologize to Debbie for teasing her about being an oncologist. That was way out-of-line, and I am sorry, but I still disagree with her comments completely.

Grace, if you have read my threads at all and even moreso from our private emails, you are aware that I aways suggest that the real time to worry is when the tumor marker numbers "go on a run"--they will start rising exponentially and usually rapidly. Many times I have suggested that moderate fluctuations in the markers are often of little consequence and I have even written somewhere here that I have experienced markers going up during certain treatments to be a good thing as it may indicate solid tumors breaking up, especially when the numbers start eventually to drop back down again rapidly. Also, you know that when I look for signs of progression in myself and others, I do not only consider the tumor markers, but also look at scans and the whole bloodwork picture--when the liver enzymes, GGT, Alk phos, and sometimes even bile are also elevating at the same time as the tumor markers, you can be certain, in most cases of her-2 mediated disease, that something is going on somewhere.

Folks, Her-2 protein is not a mythological creature, but something that is scientifically measurable. We know many things about the her-2 protein...we know when it goes up, TNF-Alpha goes down badly affecting the cells ability to commit apoptosis. We know that the more her-2 there is circulating in the system, the more chance there is for cells to grow uncontrollably and, sadly, in many places.

Grace, I am so sorry that you blame me for your current situation as I never want to say anything that makes this already bad her-2 situation worse in anyone, but folks who read me here would know that I would never under any circumstances advise the high levels of toxic chemo that you and your oncologist decided to use. I have used only Herceptin to control my mets since 1999 and have horrible misgivings about the side effects of many of the drugs being used now and in the past on folks with her-2 mediated disease.

In fact, I remember the specifics of your case quite well and have saved our private e-mails that I just re-read as I keep many her-2 case studies to review and learn from, yours was one of the most intriguing. I would be happy to reprint our discussions here. You wrote to me first in Sept 2006 about my comments on Menendez work and olive oil boosting the power of Herceptin and I told you I would highly recommend it, along with Olive leaf and the regular vitamins and minerals I always recommend. Later, you researched more on the serum her-2 tumor marker and even wrote some of your questions to Dr. Carney and made your own decision to get the serum her-2 checked which first came out to be 16. Clearly, I supported your decision and applauded what all you had to go through to access it. We later discussed Carson's work and I was most impressed at how well you were researching many of the more difficult aspects of this illness and even its future potential treatments. Clearly your background as a professional writer was most useful to you in seeking many perspectives and points of view not merely mine. You made your own decisions as we all do.

However, your case was, in my judgement, quite high risk for recurrence, you were her-2 positive and ER- and PR- as I recall--based only on what you told me in your e-mails, and even though you claim that my proddings about the importance of the tumor markers and emphasis on taking them regularly forced you to take more agressive treatment than you may or may not have needed, it is important to note that you are still here, and have since lived to write your book and actually seem to be doing better than many others who read this site who may not have been quite as lucky to have had access to markers or understood their importance. Like it or not, even you used the tumor marker information and your own research to base some of your decisions on and though I agree tumor markers are not perfect, again, I note that you are still living.

Folks, Her-2 mediated disease is very aggressive and its etiology is poorly understood. I think Grace's case, contrary to her intention, provides an excellent example of how the tumor markers may not only have saved her life, but increased its quality. We forget that she could have just as easily died, as thousands have already, from the "not knowing". Yet, Grace has lived, thank goodness, in part, from being aware at least of her numbers and the possible dangerous situation that they could have put her in.

Grace, quite frankly, I still contend that there was a high probability that you were progressing when the tumor markers were increasing and that had you sat idylly by and taken no action, most likely, you would not be here to rebut me..., but I AM VERY GLAD YOU ARE!!!!....smile...

As for many of the problems and side effects you are now experiencing, most can be managed and are not immediately life-threatening as full-blown her-2 mets would be. If you want to discuss this further, you are welcome to respond below or to e-mail me at home any time.

I personally think it was amazing how even after all you went through, you were still able to achieve your dream--your book. You are a role model for us all.

Keep on keepin' on,
Gina

[Grace]

Dear Gina,

I don't blame you, or anyone else, for my decisions. I take responsibility for my own actions. You didn't prod me to do anything, and I honestly don't see how you got that out of "Gina, Go fly a kite." My oncologist advised against running tumor markers. He's a well respected and caring oncologist who has worked solely, and for many years, with breast cancer patients. In addition, I chose him as my doctor; he wasn't forced on me by an HMO. I should have heeded his advice. I didn't, and I regret it. Nothing whatsoever to do with you. You wrote about the HER2 serum test on this site, and it was from one of your posts that I found out about it. But I certainly don't suggest that you pushed me into doing the test. Not at all.

My flippant reaction to your post on this particular thread was a cumulative response to what I viewed as an excessive, and uncalled for, dumping on Debbie because she has another point of view. I should have stayed out of it, as Debbie is intelligent, knowledgeable, articulate, and capable of responding for herself. So my apologies to both of you for getting into the mix.

With respect to the statement you made in your recent post:

Gina's post: Folks, Her-2 mediated disease is very aggressive and its etiology is poorly understood. I think Grace's case, contrary to her intention, provides an excellent example of how the tumor markers may not only have saved her life, but increased its quality. We forget that she could have just as easily died, as thousands have already, from the "not knowing". Yet, Grace has lived, thank goodness, in part, from being aware at least of her numbers and the possible dangerous situation that they could have put her in.

Gina, the above statement is false. I was scheduled for a year of herceptin before the HER2 serum test and I completed my year as scheduled, this August. I most certainly didn't have a better quality of life. I was anxious all the time, stopped writing for eight months, and spent most of my time reading about BC (how depressing). I also had five unnecessary scans, which only increased my anxiety. If anything, my experience proves Debbie's point (as well as that of my oncologist and the wisdom of the national guidelines on not running tumor markers for early BC patients). It doesn't prove yours.

Again, and for the last time ever, my suggestion, based solely on my experience, to anyone who has Stage 1 BC who may be thinking of requesting tumor markers is this. Don't assume that your markers will be in normal range, and don't expect that if they are in normal range that they'll be low normal. That is, be prepared for numbers you may not like and may not expect. You should ask yourself if you happen to have elevated markers if this knowledge will change your course of treatment. If the answer is no, perhaps you should review your decision to have the markers run.

I've read (and written) too many posts concerning elevated markers to believe that all women with BC can take a rise in markers casually. If knowing that there is a likelihood that you are having a recurrence gives you a sense of security, by all means ask for markers. But if you're at all like me and it will cause you much unhappiness, don't. If, as Margery writes above, markers may indicate a possible recurrence five or six months before symptoms, you should also consider that markers rise in many cases before the recurrence can be viewed on a scan.

So now what do you do? You have elevated markers. You request a full body PET scan, and all is clear. Do your doctors change your treatment based on elevated markers if they are not sure if the elevation represents a recurring cancer or it's the result of an infection, or chemo has pushed your markers up, or you have one of the many other benign conditions that can elevate your markers. It seems to me, you do what I did, you fret and wait. Fourteen months later and my markers are normal, and I still worry although not as much. Obviously, markers, for me, was not the right decision.

But again, I am Stage 1A, Grade 2, great margins, no family history of BC, closer to 70 than 60, and as I see it now, I had no reason to open Pandora's box.

Gina, sorry for flipping you off. I don't blame you for anything, and thank you for the kind words at the end of your post. We are certainly a bunch of strong-minded women, aren't we?

[dlaxague]

Hi all,
I'm feeling worn out by this thread. I do love debate and critical thinking and I would like to continue the discussion but I'm weary of the personal ... searching for a word that isn't emotionally charged ... and not finding it. If you've followed this thread, perhaps you know what I'm weary of.

Some of the defenses of personal views have been - well, defensive. And sometimes also offensive, in the literal meaning of that word, which Websters lists first: 1. "making attack, aggressive".

I'd like to repeat that I did not invent the recommendation of not doing tumor markers for follow up of primary disease.

I do not see any evidence that TM's make more or less sense depending upon the aggressiveness of the cancer. It could be argued that the more aggressive the disease, the shorter the interval between being able to detect it with TM's and it showing up with symptoms - which would make it less likely that the TM's would be run at the point in time where they could make a difference, if they ever DO make a difference.

Part of the reason that the national guidelines on TM's after primary disease do make sense to me is that I'm not a big fan of the whole idea of "small" being synonymous with "early". Whether we're talking primary disease or recurrence, I believe that what happens has more to do with the biology of the cancer and less to do with its bulk (brain excepted - see below). Not that it's entirely one or the other - certainly both have some influence. But I think quality trumps quantity in most cases, at least as long as we're looking to eradicate or slow it using systemic treatment. If the cancer responds to the systemic treatment, it seems to respond equally well whether there is lots of disease or a minimal amount. If its response is sluggish or absent, that again seems less to do with bulk and more to do with biology. It's true that larger tumors can do more damage but it's unusual for them to get to the point of being able to do permanent damage without first announcing their presence with symptoms.

Another point is that the quicker a recurrence or progression is detected and acted upon, the quicker one runs thru the available options. It's a valid argument to say that factor alone could impact length of survival. Some perfectly intelligent and thoughtful women and their providers prefer to move slowly even when there's clear evidence of progression, for this reason.

So brain mets - what a puzzle. If it works to zap relatively small lesions, and sometimes to surgically remove larger ones, why isn't the same true for other organ mets? Maybe it could work but it's considered a better option to treat them with systemic meds (chemo, Herceptin, hormonals), so it's not been offered enough to study? Is that because the mets stay gone better if there's response to systemic treatment? Or because systemic tx is more likely to get more of the too-small-to-see lesions and cells?

I don't know the answers but it's hard not to see the questions. IF we ever were to get to the point of removing or zapping organ mets (besides brain), then the argument for frequent scans and TM's would make more sense to me. But to my knowledge, we are not there (yet?). I'm not saying that it's not being done, but there's scant evidence that it makes a difference. And whether we like it or not, we do need evidence to make changes in practice. Again I reference the bone marrow transplant fiasco, and the book "False Hope" by Richard Rettig (very pricey book, which is why I haven't read it yet).

Regards,
Debbie Laxague

[AlaskaAngel]

The debate has been difficult at times, but the issue is one that is hard to understand. I think it is worthwhile.

I don't know what criteria the people used who created this particular guideline, but it is hard for me to agree that this guideline would provide more help than horror for those who are continuing on difficult, uncomfortable, expensive treatments that they are hoping are keeping them NED throughout the time that markers might have helped them to know that what they were doing wasn't helpful. If I read your argument correctly, these patients are better off kept in the dark based on the judgment of the people designing the guideline (who are not, after all, the ones directly dealing with cancer themselves). This guideline then would be based primarily on extending survival and not at all on QOL, since obviously QOL is worsened in this case by being kept in the dark. It seems like they are somehow measuring the value of hope against the hardships of treatment, and how do they manage to do that with any accuracy?

I also think the perceptions about doing markers would be somewhat different depending on whether the guideline is intended to address the UNreasonableness of doing routine markers for everyone who has had bc -- for example, including those diagnosed at early stage whose labs and all other indicators are wonderful and who have been NED from the getgo -- versus those at the other end of the scale, those who have recurred once and are NED. If the guidelines are meant to say that those who have recurred but are NED don't benefit from routine markers, then we do disagree. The guidelines discourage the routine use of markers, but don't say not to use markers altogether. But what would be the guideline definition of the non-routine use for markers?

A.A.

[dlaxague]

Sorry, AA, I rambled and got off the actual topic, which is follow up after primary breast cancer. The guidelines I've been referencing address only follow up after primary breast cancer. The studies on which the guidelines are based, as Margerie confirmed when she got access to that "uptodate" summary, do claim equal QOL for those not doing TM's as part of primary follow up.

The rest was conversation and thinking-aloud, although as I said, it's a valid conversation and some women and providers prefer that style of management after recurrence, for the reasons that I stated.

I think that the option of using markers for follow up after a distant recurrence is considered standard of care, although not all oncologists use them for all patients, for various reasons (they don't work for that patient, the oncologist prefers scans, etc). And they are not stand-alone. They are used as one piece of the puzzle that would include scans and symptoms.

Debbie

[Lani]

hot off the press is all I will add for now

J Clin Oncol. 2007 Oct 22; [Epub ahead of print]
American Society of Clinical Oncology 2007 Update of Recommendations for the Use of Tumor Markers in Breast Cancer.

Harris L, Fritsche H, Mennel R, Norton L, Ravdin P, Taube S, Somerfield MR, Hayes DF, Bast RC Jr.
Yale Cancer Center, Yale University, New Haven, CT; M.D. Anderson Cancer Center, Houston; Texas Oncology PA, Dallas, TX; Memorial Sloan-Kettering Cancer Center, New York, NY; National Cancer Institute, Bethesda, MD; American Society of Clinical Oncology, Alexandria, VA; University of Michigan Medical Center, Ann Arbor, MI.
PURPOSE: To update the recommendations for the use of tumor marker tests in the prevention, screening, treatment, and surveillance of breast cancer. METHODS: For the 2007 update, an Update Committee composed of members from the full Panel was formed to complete the review and analysis of data published since 1999. Computerized literature searches of MEDLINE and the Cochrane Collaboration Library were performed. The Update Committee's literature review focused attention on available systematic reviews and metaanalyses of published tumor marker studies. In general, significant health outcomes (overall survival, disease-free survival, quality of life, lesser toxicity, and cost-effectiveness) were used for making recommendations. Recommendations and CONCLUSIONS: Thirteen categories of breast tumor markers were considered, six of which were new for the guideline. The following categories showed evidence of clinical utility and were recommended for use in practice: CA 15-3, CA 27.29, carcinoembryonic antigen, estrogen receptor, progesterone receptor, human epidermal growth factor receptor 2, urokinase plasminogen activator, plasminogen activator inhibitor 1, and certain multiparameter gene expression assays. Not all applications for these markers were supported, however. The following categories demonstrated insufficient evidence to support routine use in clinical practice: DNA/ploidy by flow cytometry, p53, cathepsin D, cyclin E, proteomics, certain multiparameter assays, detection of bone marrow micrometastases, and circulating tumor cells.
PMID: 17954709 [PubMed - as supplied by publisher]

[hutchibk]

I spoke with my doctor today about this debate. He stated that it is hotly discussed and controversial among oncologists as well... it seems to me to be broken down into basically two groups: *those clinicians who prefer to follow generalized guidelines and prefer to align their clinical approaches pretty strictly in adherance with studies, and *those clinicians who prefer to use every tool at their disposal to determine what is the earliest indicator for an individual patient and prefer to tailor their clinical approach to each patient as an individual. I asked him his thoughts and 20 years of experience regarding the following three questions, and (in my words, not verbatim) this is the result of our discussion:
1. Is there a significant value to using TMs as a method of surveillance post initial DX and treatment? He uses TMs on every b/c patient. He uses them as a piece of the big picture, and that much of the time they closely correlate to recurrance. He does not shrug them off, even if they don't seem to apply easily to a certain patient. For very many, TMs are a very significant tool, but on the flip side, they do not always yield trustworthy info for every patient. It is true that TMs can be tricky and misleading some of the time, and the rest of the time they can offer tremendous insight. He believes that in innumerable cases they offer tremendously valuable early indication and can contribute substantially to offering better and longer survival, and valuable info regarding treatment options and treatment response. He increasingly finds that studies which seem to discount the value of TMs are often flawed and/or outdated. He would rather use TMs than not. And he is very adept at applying the TM info correctly to each individual patient.
Follow-up question: Should clinical cases where tumor markers have been found to correlate directly to metastatic disease be considered merely "anecdotal" in comparison to the studies of the last 8-10 years? If only one life were saved or extended, that is not "anecdotal." The use of the word "anecdotal" to describe a significant success seems to be merely an attempt to diminish the clinician who might not necessarily agree with or has opposite experience of the studies.
2. Is there a survival benefit to monitoring and attempting to diagnose metastatic disease at it's earliest, rather than waiting for clinical symptoms? Unequivocally, YES. In 20 years, he has seen multitudes of lives positively extended due to the earliest possible DX of mets. When they are smaller and more contained, they are easier to treat, easier to combat and eradicate, and come with less collateral damage and less additional medical complications than if found later when more damage has been done. With the earliest possible DX of mets, treatment options can usually be less invasive, less aggressive, and very often yield the best possible outcome. That speaks multitudes about positive QOL as opposed to the difficulty to QOL that can be caused by more aggressive and more invasive treatment options. His example was "why would you NOT monitor (scans, labs, etc) for bone mets and instead wait for symptoms? How would it NOT be better to DX a hip bone tumor met early and eradicate it, than to wait for a broken hip to tell you that you had a tumor that disintegrated the bone and caused it to break? Then you have a tumor that is bigger and might have broken away and continued to spread. Then you have a problematic and expensive hip repair surgery, which may not even be an option. Then you have a patient who is potentially in a wheelchair for the rest of their life. Then you have tremendous pain issues. Then you have a patient who's overall health, well-being, and well-survival potential is tremendously compromised. And on the flip-side, an early DX of the same hip bone met could avoid most, if not all, of those issues. Of course there is a significant survival benefit to finding it sooner rather than later. (And using me as an example... in my case we were able to use a new and less invasive treatment option as opposed to whole brain radiation, because my mets were found extremely early and very small and had not yet produced symptoms. Had we not found them until they were causing symptoms, I would have faced the much more expensive and more physically difficult probability of targeted rads or WBR... Additionally, we have knocked back the same mediastinal nodes twice now due to the assistance of rising markers and earliest possible detection.)
3. What do you think about the QOL distress that some cancer patients claim is caused by close surveillance? Overwhelmingly in his practice, QOL distress is caused when patients worry that they are not being monitored closely enough. If QOL distress is truly caused by close surveillance, then why even do the initial screening exams? Why go for pap smears or mammograms or colonoscopies or to the dermotologist to begin with?

I just thought this might be valuable to the discussion. Maybe everyone should ask their docs about their thoughts and experiences regarding similar questions...

I feel so very lucky to have the doc that I have. He is a true gem. He practices oncology from the standpoint of the individual and not from the starting point of statistical studies. He is part doctor, part psychologist, part priest and he is a brilliant man.

[Bev]

Hi Brenda,

I like the reply. Easy to understand. I guess my question would be if early stage that has done Herceptin need the same level of surveillance? I guess we don't know yet. We are going thru a learning curve but the stakes are high. BB

[hutchibk]

HI Bev - I think that his (and my) opinion would concur... the stakes are too high to not monitor closely - until we know more about the true efficacy of the targeted agents over time.

[nitewind]

Very interesting conversation! After reading thru I asked my oncologist about the tumor markers. He just shook his head and said, "no", " to many false positives". Now I don't know what to think! I would rather know sooner than later, personally. It makes sense that it would be easier to treat the sooner you catch it. But, my oncologist is a non believer in tumor markers. What's a person to do?
I'll continue to watch this thread, like I said, very interesting.

[Mary Anne in TX]

I wish I had more faith in my ability to "catch those early symtoms", but I'm the one who thought my tumor was shrinking on Adriamycin and Taxotere and they were doubling in size! I have no faith in my ability to "catch" anything! I am so suggestable! I believed they would shrink so I "felt" they were! I don't like waiting to know what the markers are and I don't think they are always "right on", but they are the best I have at the present time. I believe that they will replace them with something really right on some day soon, but til then, I'll hate them for not being more accurate and love them for standing beside my "suggestable" mind!
When I hear you talk about your monthly self-exams, I feel a bit of jealousy for your confidence in doing so. I don't trust myself at all! But I do them. Thanks to all for being willing to share your thoughts, and fight for your beliefs! I think that some of the "strong feelings" are about how responsible we each feel for the "newbies" to this site. We so want to help to "save" a sister!
Well, enough for now. I sure do love you guys and thank you for being exactly who each of you are...strong willed, hard-headed, determined to stop ol BC in it's tracks! Believing in the victory, mary anne

[fullofbeans]

Brenda, I wish I had your oncologist! I especially endorse his view about the usefulness of finding mets early.

Regarding the TM use, well this thread started with the actual statistics 69% & 76% which is pretty good. So if your onco says it has too many false well..this is the actual percentage.

However if you are a stage 1 or 2 and do not wish to worry yourself with these then it is your choice, there is no wrong or right answer as to how to handle your eveday life/anxiety post treatment and you know what? you have 70% or so to not need it! That said even if I was stage 1 or 2 I still would have TM because 30% risk or so he in my book worth considering. For me now it is the contrary seeing my TM low makes me smiles and lift me up..it does not stop worrying about symptomatic issues but I know that it helps me stay more cool.

[hutchibk]

Just to be extra clear... my onc agrees that TMs don't always offer trustworthy info for every patient. But then much of the time, along with other monitoring methods that create the big picture, they do correlate directly to recurrances. If he were to not use them at all simply because they are not 100% accurate for every patient, then he would be shortchanging the half of his patients for whom they might prove (and have proven) to be a valuable indicator. He is very savvy about TMs. He sees them as an additional tool in the battle, one that has to be used with the utmost of proficiency and experience. He is very adept at deciphering who they are a valuable indicator for. But he would never know were he to not run them and follow them from setting a baseline post initial DX. His approach is to attempt to do everything possible to battle this disease, and finding out if TMs are indicative of activity and a valuable tool for an individual patient falls under "everything possible." For many (like me) they have proven to correlate directly to activity.

Maybe this is a very simplistic cliche', but for me it is basically "there is no way to know if you don't try...". Personally, I believe the stakes are too high to rely on statistics and generalized studies as the basis for my surveillance.

[AlaskaAngel]

After seeing how wrong the scientific community was over time about the risks and benefits involved with the use of the combination of estrogen and progestins, I look closer at their guidelines and recommendations to see how well they match up with "common sense" as well as whatever studies have been done.

I respect the basis for someone who is pretty thoroughly educated about breast cancer to make strong efforts to be sure people here know what the recommendations are, and provide some explanation for the basis behind them. I think that is admirable.

On a personal level, for me the rationale based on common sense holds water even for those who are diagnosed wtih high-risk early stage bc , or "primary" bc.

My rationale is this: If as an early stage breast cancer patient I am considered at high enough risk to be expected to accept and follow through with such toxic and expensive and difficult treatment as chemotherapy and radiation and synthetic antihormonal treatments, then I am at high enough risk for recurrence to be offered the right to periodic measurement with reasonably useful TMs such as CA 15-3 and CA 27.29. And of course I feel the same about anyone diagnosed with higher stage bc

One might argue that after having treatment I am at less risk so less likely to benefit from periodic marker testing. But given that we are currently still stuck with hardly any targeted testing at time of diagnosis, and because the current blanket approach with treatment only works for some (with resistance known to develop to treatment), I feel marker testing is truly justified -- especially since it is relatively inexpensive and nontoxic.

Regardless of whether markers improve survival (although I suspect they do now for HER2's to some degree, with more recent treatments), there are other reasons to want to know if one is progressing that are very relevant.

It would be interesting to see what the professional recommendations would be if they were made by a group of professionals who had undergone treatment for breast cancer.

AlaskaAngel

[Lani]

ASCO Issues Updated Recommendations For Breast Cancer Tumor Marker Testing [American Society of Clinical Oncology]
ALEXANDRIA, Va. — The American Society of Clinical Oncology (ASCO) has updated its clinical practice guideline on the use of tumor markers in breast cancer. The guideline authors observed that although researchers have made progress in developing tumor markers in areas such as diagnosis and treatment planning, mammography remains the gold standard in screening for breast cancer.
A tumor marker is a substance found in a person's blood, urine, or body tissue. The presence of a tumor marker, or higher- or lower-than-normal levels of a tumor marker, may indicate an abnormal process in the body, such as cancer, and can provide further information if cancer is diagnosed. Doctors may suggest tumor marker tests at various stages in the diagnosis or treatment of cancer. These tests can provide helpful information about both the cancer and the treatment.
"Increased use of tumor markers represents a shift in our understanding of the basic biology of breast cancer, which will affect how we treat patients," said guideline co-author Lyndsay Harris, MD, Vice Chair of ASCO's Tumor Markers Expert Panel and Associate Professor and Director of the Breast Cancer Disease Unit at Yale University. "The cancer research community needs to continue to conduct more clinical trials to examine exactly how tumor markers can help with the early detection of breast cancer."
To update its clinical practice guideline, first published in 1996 and subsequently updated in 2001, the ASCO expert committee reviewed the use of tumor markers in breast cancer and made recommendations based on their effectiveness for early detection of the disease, as well as their benefit in helping to plan treatment, monitoring response to treatment, and determining a patient's prognosis.
Much progress has been made in the area of tumor markers over the past 10 years. Since the 2001 guideline, researchers have identified six new categories of tumor markers. Although currently there are insufficient data to recommend the use of any of these new tumor markers in diagnosing breast cancer, both ER/PR and HER 2 testing are still recommended for diagnosis, as noted in previous versions of this guideline. However, two new tumor marker tests were recommended for their use in determining a breast cancer patient's treatment or whether or not breast cancer is likely to return after initial treatment.
The updated recommendations covered two new tumor marker tests for patients with newly diagnosed node-negative breast cancer, or cancer that has not spread to the lymph nodes.
The Oncotype DX tumor marker test is recommended for patients with node-negative breast cancer that is ER-positive and/or PR-positive, which is the case for 50 percent of breast cancer patients. The test measures multiple genes at once to estimate the risk of breast cancer recurrence. Patients with a low recurrence score may be able to receive only hormone therapy and avoid chemotherapy. Sparing patients from unnecessary treatment may not only improve their quality of life, but it also will reduce overall health care costs.
Other tumor markers that doctors can test are urokinase plasminogen activator (uPA) and plasminogen activator inhibitor (PAI-1) markers. Testing these tumor markers can help estimate a patient's prognosis. Patients with tumors that do not have uPA and PAI-1 have a good prognosis and may not need chemotherapy. However, the test is not currently commercially available in the United States, but it is in Europe. More studies of this tumor marker are currently under way.
The guideline also encourages patients to enroll in clinical trials that focus on the use of additional tumor markers as a surveillance tool for breast cancer.
"Tumor markers can predict whether or not a patient will respond to treatment," Dr. Harris said. "The goal of these guidelines is to help doctors provide their patients with the best possible care. Patients will benefit from knowing whether or not a treatment will help them before beginning the treatment regimen."

[Lani]

OPEN ACCESS: REPORT: American Society of Clinical Oncology 2007 Update of Recommendations for the Use of Tumor Markers in Breast Cancer [American Society of Clinical Oncology]
Purpose: To update the recommendations for the use of tumor marker tests in the prevention, screening, treatment, and surveillance of breast cancer.
Methods: For the 2007 update, an Update Committee composed of members from the full Panel was formed to complete the review and analysis of data published since 1999. Computerized literature searches of MEDLINE and the Cochrane Collaboration Library were performed. The Update Committee's literature review focused attention on available systematic reviews and metaanalyses of published tumor marker studies. In general, significant health outcomes (overall survival, disease-free survival, quality of life, lesser toxicity, and cost-effectiveness) were used for making recommendations.
Recommendations and Conclusions: Thirteen categories of breast tumor markers were considered, six of which were new for the guideline. The following categories showed evidence of clinical utility and were recommended for use in practice: CA 15-3, CA 27.29, carcinoembryonic antigen, estrogen receptor, progesterone receptor, human epidermal growth factor receptor 2, urokinase plasminogen activator, plasminogen activator inhibitor 1, and certain multiparameter gene expression assays. Not all applications for these markers were supported, however. The following categories demonstrated insufficient evidence to support routine use in clinical practice: DNA/ploidy by flow cytometry, p53, cathepsin D, cyclin E, proteomics, certain multiparameter assays, detection of bone marrow micrometastases, and circulating tumor cells.

[hutchibk]

Well, there you go.

[dlaxague]

Brenda said:
Well, there you go.

Geeze, I've been trying to leave this alone (smile). But I'm not sure what you mean by that comment, because these guidelines repeat what I've been saying. Here's a link to the full text of the guidelines and for follow up after primary diagnosis, they are exactly the same as I've been mentioning all along (no benefit): http://jco.ascopubs.org/cgi/reprint/JCO.2007.14.2364v1 (http://jco.ascopubs.org/cgi/reprint/JCO.2007.14.2364v1)

In addition, they say about the HER2 extracellular domain test (is that the same as the HER2 serum test, which I know NOTHING about and have no opinion on, please do not blame me for ASCO's opinion) again, the formatting's weird when I copy/paste:

Utility of circulating extracellular domain
of HER-2
Measuring circulating extracellular domain of HER2 is not currently
recommended for any clinical setting. There is no change from the
guideline published in 2000.

Debbie again - Brenda, Gina, FOB and others - are you going to SABCS this year? I'd like for us to meet, if you're willing. I suspect that we'll like each other better, in person. We all want the same things, after all - the best information there is available upon which to base a personal decision, and at least a basic understanding of that information for all women, right?

Debbie,
still wondering about the concept of zapping or surgically removing small organ mets as is done for those in the brain. Maybe a quick zap or procedure, and then some light chemo, herceptin, tykerb, or hormonal mop-up? Do you know if anyone's looked at that?

[hutchibk]

Hi Debbie,

"The following categories showed evidence of clinical utility and were recommended for use in practice: CA 15-3, CA 27.29... Not all applications for these markers were supported, however... The following categories demonstrated insufficient evidence to support routine use in clinical practice: DNA/ploidy by flow cytometry, p53, cathepsin D, cyclin E, proteomics, certain multiparameter assays, detection of bone marrow micrometastases, and circulating tumor cells."

This sounds to me to support evidence of clinical utility and that certain ones are recommended for use in practice. (My TMs are specifically CA 15.3.), Am I reading it wrong? Is there something between the lines that I should be interpreting differently, or can I take those words at face value? I guess I haven't made my personal opinion, research and preferences clear enough, which are: there are oncs who don't defer to generalized studies and guidelines, and who use specific TMs in the clinical setting, who are adept at following them and applying them to patients whom they apply to, following their theory of individualized treatment. I heartily hail these docs (and mine is one).

Yes I will be at SABCS. It will be good to meet everybody.

[dlaxague]

Not wrong, that's a correct quote, but just not all of it. Somewhere it says in the short version that some of the markers have limitations or are only for certain circumstance (my words, not their, I'm in a rush). Here's the quote from the full article, about primary f/u using CA 15-3 and CA 27.29:

CA 15-3 and CA 27.29 to detect
recurrence after primary breast
cancer therapy
Present data do not support the use of CA 15-3 and CA 27.29 for monitoring
patients for recurrence after primary breast cancer therapy. There is no
change from the guideline published in 2000.

Formatting lost, as usual. And the discussion, which I'm just now reading, between fixing dinner chores:

2007 recommendation for CA 15-3 and CA 27.29 to detect recurrence
after primary breast cancer therapy. Present data do not support
the use of CA 15-3 and CA 27.29 for monitoring patients for recurrence
after primary breast cancer therapy. There is no change from the
guideline published in 2000.
Literature update and discussion. Several well-designed studies
have shown that an increase in CA 15-3 or CA 27.29 after primary
and/or adjuvant therapy can predict recurrence an average of 5 to 6
months before other symptoms or tests. While additional studies have
been published since the last ASCO guideline that address the value of
these serum markers at detecting recurrence,11-16 there are no prospective
randomized clinical trials to demonstrate whether detection
and treatment of occult or asymptomatic metastases using tumor
markers impact on the most significant outcomes (disease-free survival,
overall survival, quality of life, toxicity, or cost-effectiveness).
Although the assay was approved by the US Food and Drug Administration,
theUSFood and Drug Administration does not require tests
to show clinical benefit if that is not part of the manufacturer’s indication.
Given the limited evidence, and until clinical benefit is established,
present data are insufficient to recommend routine use of CA
15.3 or CA 27.29 for this application. This recommendation is in line
with that of the ASCO guideline for follow-up and management of
patients with breast cancer.9

Debbie again - There's another disclaimer that you'd like, about individual judgment and the recommendations not being always the best for individuals - use my link and read the whole thing, it's fascinating, at least so far.

[Becky]

I will be at SABCS as well.

[hutchibk]

Debbie,
Goodness. I suppose you have parsed the report to the inth degree and proved your point if that is what you are hoping to do. You are "righter" than I am if you need to be. I retract "well there you go" response because I am only partially correct at reading the conclusions of Lani's 5:15 post. You win when it comes to interpreting and agreeing with generalized studies and NCCP, ASCO, etc guidelines.

Thank goodness you don't go to my doc. He would drive you crazy with his desire to treat outside of strict guidelines.

[AlaskaAngel]

They neither recommend against routine use nor recommend routine use of markers for primary stage bc.

So far it appears they are continuing to remain generally out of touch by actual clinical practice and preference among a fair number of their own specialty, as well as among the majority of patients.

http://her2support.org/vbulletin/showthread.php?t=30703

Does their report indicate they recommend that the studies they say have not been done to provide adequate documentation for any meaningful conclusions be done? Or are they satisfied to simply not recommend for or against use of markers indefinitely?

A.A.

[hutchibk]

Well, I am glad they are definite and decided about what they recommend... LOL. That is an attempt at sarcasm, fyi.

[Barbara2]

Are tumor markers reliable?

Question from Ruth: Do tumor markers in the blood always show if breast cancer has spread and/or if you have developed another separate cancer?
Answer:
Larry Norton:

Tumor markers in the blood are helpful but not definitive. Some patients can have growing disease and the markers do not become elevated. Others have elevated markers but no disease. Tumor markers are often a source of anxiety that is unnecessary because they are helpful, but not absolute in terms of their meaning. For this reason, tumor marker results have to be interpreted by an expert oncologist.

(Larry Norton, M.D. is Deputy Physician-in-Chief and director of breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York City.)

[Lauriesh]

I wanted to add that I know a woman (a young woman) who only discovered her bone mets after her hip broke and she needed a total hip replacement, which was the scenario that Brenda's onc referred to.

To Debbie, what do you say to her. How do you argue that finding her mets early (say as just a spot on her hip that showed up on a routine bone scan) wouldn't have improved her quality of life.

Is her case rare? yes it is. But it was also rare for me to get breast cancer at 37, with no family history. I get tm and routine scans because while it is rare, I do not want to be like this woman. I have three little kids and I don't want to be in a wheelchair for the rest of my life.

I think there are more onc's like Brenda's out there and it will only be a matter of time before research and studies reflect this newer thinking on catching mets early.
But until then, I am looking out for myself.

Laurie

[fullofbeans]

The uncertainty of sciences can be a frustrating concept at best of time but is a concept that is especially difficult for us to accept since we would like definitive answers.

Just like a chemo works for some and not for others we have to accept that until now there are no bullet proof TMs.

In the meantime what is a girl to do?, well I will no longer go there;-)

[dee]

From a tiny member of the Silent Majority... - I suspect your collective thoughts and writings on this major subject have been tiresome to some of you involved, as 'evidence' from the narrative would indicate. For us, it's been invaluable. Thanks for your risk taking behavior. We appreciate your dialogue!

Dee

[newgg]

Agree with Dee and from another member of the folks that read this board every day......all you risk takers give the entire board....you give us POWER! And we will not "should" on ourselves or each other. What we should or should not do ....that goes directly go our personal decision and our individual comfort zone. BUT.....we all need many pieces of the POWER pie to travel this journey. Some have all these power pieces...you know: Power of faith, Power of family, Power of modern chemicals, Power of strong support, Power of attitude and here we get the Power of Knowledge !! We do not have to agree and we can agree to disagree. These discussions give all of us added resource to our Power of Knowlege. There is NO other place to learn more about HER2 serum, power ports, cyber knife, chemo combos, crazy hair, shared giggles and love. Thank you, Thank you, Thank you....for the info and discussion and the POWER ! Keep it up !!! Hugs, Bonnie
PS....my personal comfort zone is to do the markers.

[hutchibk]

Now, it isn't necessarily reflected here, but just so's youse guys know - Debbie (dlaxague) and I do have a lot in common and are friends behind the scenes... we both like potatoes, love the Four Agreements, and are pretty adept at feisty debate! LOL. I try to reserve debate for the subjects I am really interested in and feel I have something valuable to offer as I believe she does, too. This thread forced me to do some clinical research (in my doc's office...ha) and I learned a lot. Thanks for putting up with us and our diversity of info and beliefs.

[StephN]

Hi everyone -
Should anyone wish to read further on this subject ...

In scanning once again this thread I saw the words "decision tree" someplace and now can't find it. These words triggered something deep in my memory and I went in search.

BTW - before I get into that, I want to mention that the NCCN is having a conference in La Jolla on Nov. 7:
http://www.fhcrc.org/patient/treatment/trials/details.phtml?searchTerms=6530&searchFields=ProtID&searchKind=clinical

In which they will take up the subject of Guidelines Overview and Update on Quality Initiatives. That item is first on their agenda.

Ok, back to the original thought. When I was diagnosed I recall going over some treatment guidelines with one of my practicioners. Hunted in my folder of early info gathered at DX and found "Breast Cancer Treatment Guidelines for patients" Version III, June 2000, a 51 page booklet. A joint publication of the American Cancer Society and and the NCCN. There are chapters with Decision Trees for every stage of BC. AS well as "Follow-up/Recurrent Cancer."

Each passage which pertained to my original diagnosis is marked. When it came to the Decision Tree I found my stage, my pathology and the general treatment options (they were very general). In the "follow-up" section the info is scant and basic as to how many exams per year, length of time between mammograms and what to do if you are on Tamoxifen. Got much more specific as to work-up for a suspected recurrence, bone pains, etc.

These decision trees are basically OUTLINES of how to proceed for various types of BC. In the version I have there was nothing about what NOT to do for followup.

I know this is "old" information, but the fact that it was SO GENERAL is what I want to point out. At that time it seems to be left up to the oncologists to decide what was best for any particular patient, and may be why so many of our doctors STILL are not in lock step with whatever guidelines have come out in the meantime.

In explaining my particular "scary" diagnosis to my family and friends, I found this booklet very helpful as it was succinct and had easy to follow visuals for each stage. I had to flesh it out with specifics of my own treatments, but the "why" was there in black and white.

I don't find these trees on the NCCN site, but you have to be a member to have access to it all.

[Mary Anne in TX]

I don't have a clue just where the "trees" are, but I went through them over and over when I was first diagnosed. As I read your post, I remembered that when I first began to search the "trees", I was so hoping for more detais! But over time I saw the wisdom too in the options left to those who cared and cared for us. As I traveled back in time I had the opportunity of be so grateful for the options my onc chose for this ol' gal! Thanks Steph. ma