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and time to it, (including mine) who would love to expound on how and why the theoretical guideline you reference is outdated and obsolete thinking.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