Routine marker testing and recurrence... worth it?

[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

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

[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

[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

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

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

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

[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.

[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

[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

Gina,

Go fly a kite! Please!

[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

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?

[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

[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

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.