Routine marker testing and recurrence... worth it?
 

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

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!

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

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

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?

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.

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?

The old "are markers reliable" question
 

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.

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.

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?

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.

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

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

apples to oranges
 

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

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

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.

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.

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

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

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

jargon
 

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

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.

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

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

My onc and I have discussed this issue, too...
 

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.

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.


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


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

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

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.

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

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.

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

Carolyn

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]

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

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.

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.

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

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.

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

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

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

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

Hmmmmm....
 

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