Routine marker testing and recurrence... worth it?

[Mary Anne in TX]

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

[saleboat]

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

Just an alternative approach for those who do TMs.

[caya]

Saleboat and Grace,

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

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

all the best
caya

[Soccermom]

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

[dlaxague]

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

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

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

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

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

Respectfully,
Debbie Laxague

[hutchibk]

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

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

One more for good measure.

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

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

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

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

[BonnieR]

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

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

Dear Bonnie,

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

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

[StephN]

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

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

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

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

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

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

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

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

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

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

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

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

[KellyA]

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

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

Love you all,
Kelly

[Margerie]

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

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

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

[Soccermom]

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

http://her2support.org/vbulletin/sho...light=caffeine

Hugs,Marcia

[dlaxague]

http://patients.uptodate.com/topic.a...astcn/19564#19

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

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

Debbie Laxague

[Margerie]

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

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

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

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

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

[hutchibk]

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

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

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

[Bev]

Hi Brenda,

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

[hutchibk]

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

[nitewind]

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

[Mary Anne in TX]

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