Routine marker testing and recurrence... worth it?

[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?

[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