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and time to it, (including mine) who would love to expound on how and why the theoretical guideline you reference is outdated and obsolete thinking.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.

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

Back to the nitty gritty
 

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.

HER2 and general bc
 

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

RE: nitty gritty, her2 and general bc, etc.
 

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

Try this on
 

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.

Hi Alaska Angel,

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

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

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

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

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

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

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

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

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

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

Debbie Laxague

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

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

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

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

AlaskaAngel

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

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

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

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

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

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

Party on!

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?

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.

Markers for varying reasons
 

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.

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

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

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

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

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.

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

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

Hugs,Marcia

does anyone have full access to "uptodate"?
 

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

Sorry, Debbie, But you are just COMPLETELY WRONG!!
 

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!

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.

Special Reply to Grace and to Debbie
 

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?

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

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.

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

as you may have noticed I stayed out of this. 2007 Update ASCO positionon t markers
 

hot off the press is all I will add for now

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

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

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.

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

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.

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.

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

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

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

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

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

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

Sifting through the discussion on markers
 

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

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

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

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

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

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

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

AlaskaAngel

again, I am not opining here. ASCO issues updated recommndns re bc tumormarkers(contd
 

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

continued.....
 

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

Well, there you go.

we go where?
 

Brenda said:
Well, there you go.

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

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

Utility of circulating extracellular domain
of HER-2

guideline published in 2000.

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

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

Hi Debbie,

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

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

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