Routine marker testing and recurrence... worth it?

[Soccermom]

FOB, when I Googled c-erb2 ,Genentechs Herceptin page came up...so I am assuming its the same as Erb2..as for the PR-, I still havent been able to figure that one out (not for lack of trying).
I will email the article to a Doc of genetics I know and see what he thinks..

Marcia

[AlaskaAngel]

No wonder learning about HER2 bc is so confusing!

Steph's quote is of course accurate, in what it says about c-erb2. I should have been very specific in my statement about it. "c-erb2" is another name for HER2/neu -- and I suppose it is used in some contexts as saying the same thing as "HER2/neu test" without actually saying "HER2/neu test . But even when it is, it only would refer to testing that is run on tumor tissue, where the tissue is stained -- and I've never seen it used to refer to serum testing for HER2.

I don't understand what the connection is for PR- or PR+ in this particular report.

Alaskaangel

[Becky]

I believe that the earlier mets can be diagnosed, the better the quality of life for the patient. For example, less toxic cocktails can be used like Herceptin/Arimidex, Herceptin/Tykerb, Herceptin/Avastin. Many of these targeted therapies don't do as much damage to the body as chemo does, yet it may bring on complete NED or NED for quite awhile before bigger guns have to be employed. Oncs really have to work with the big guns when tumors are large because those tumors can get in the way of the body working properly. Secondly, getting it under control while small means it isn't a big tumor that is shedding cells all over the place - yes, treatment will still get these cells but it gives more chances for some of those cells to go to the brain.

I am PR- and don't understand what the study is trying to say and I really like to understand since being ER+, I would love to figure out the real role of the progesterone receptor (or lack thereof) in this disease.

[dlaxague]

Hi all,

My goodness there is a lot of emotion in these replies. I am okay with that. I like debate because I learn from what others say, and I learn as I think thru what I'm trying to say. But we can keep it polite and we'll all learn more. I might even change my mind, or you might change yours. Or we can just agree to disagree, and still respect each other.

My post did not contain my "opinions" about tumor markers as follow up after primary disease. I posted what the NCCN (National Comprehensive Cancer Network) guidelines advise as follow up after primary breast cancer. I've posted this before on this list, and have met the same resistance. There have been several large well-done studies that have shown no benefit to finding mets before symptoms herald them. These studies were judged well-done by the experts, not by me. Here is a link to the NCCN breast cancer guidelines. The short paragraph about follow up is on the left side of page 23, and the references are at the very end of the long (100 page) document (it takes awhile to load, be patient).

http://www.nccn.org/professionals/ph...PDF/breast.pdf

You can give anecdotes all that you want about "early" detection of mets making a difference, but there is no way to prove nor disprove whether it really made a difference or not. We can find a similar number of anecdotes about widespread mets responding well, too. And vice versa, as I said in my first post - we can find anecdotes of minimal, "early" disease that responded to nothing.

I think that I mentioned several times in that first post that brain mets are in a different category, especially for those who had herceptin as treatment. There is value to finding them early and small but I don't think the recommended way to do that is with TM's - I think it's with brain scans. And even with HER2+/Herceptin, brain mets are an unusual site of first recurrence so it could still be argued that after primary disease there is unlikely to be value to brain surveilance. I don't think that I'd argue with anyone who wanted regular brain surveilance, though.

The way to know these things (treatments and plans of care that are of benefit) is to do large studies, and to do them well. That has been done for this issue (follow up after primary disease) and these are the answers. I don't see how you can argue with that. (but if you want to, I'm willing to continue the polite debate).

I think that the reasons for this truth are very important. We do not know the reasons, although there are lots of fascinating theories that could explain the dynamics, and research continues to try to find the answers. Perhaps they will find clues within this question (why doesn't it make a difference to catch mets "early") that lead to understanding and perhaps that understanding will lead to treatment that will make all breast cancer - both primary and mets - curable. But I digress.

Debbie Laxague

[Barbara2]

Is there benefit in finding mets early? He told me right from the start (at diagnosis) that when mets are found, treatment will follow, but finding them early does not increase the time of survival. That really puzzled me; it didn't make sence. I wondered, what if a person lets mets go on and on, untreated, then what? Wouldn't you die earlier if the mets were not treated? It would seem so, unless none of the treatments were of benefit to you.

I asked him again the last time I saw him...what is the thought behind finding and treating mets early? He said it is controversial. Some oncs believe finding them earlier is better; that the tumor burden is smaller and easier to manage. He agrees with that logic; that finding it earlier could lead to a longer survival time.

We have read, though, remarks from many people who have posted here, that their oncs do not believe in doing markers. They wait until symptoms show up, then run tests.

I think some of us feel the most comfortable when we believe we are being as aggressive as possible with our with our cancer; that by finding it early, we will benefit. I guess each of us knows what we have to do to cope; and if we feel better using markers, and our oncs agree to letting us do so, then we are more at peace. Everyone has to do their own thing when determining how they can best handle this disease.

Below I have pasted some remarks from Dr. Pegram, that relate to this topic.

Tumor Markers

What is your opinion of having markers done?
I do them. They’re not very good, but I do them once in a while. It’s about like the barometric pressure. “How’s the weather today?” Oh its 760 millimeters of mercury today; well that’s one atmosphere, so that tells you maybe it’s not high or low but it doesn’t tell you the temp, clouds, precip. So that’s exactly the analogy I would make of the tumor markers. They’re a piece of a puzzle; by themselves they’re virtually worthless. But I still give them.

Do positive or negative hormones make a difference?
<O

It doesn’t matter. I tend to dismiss the subset analysis because the numbers get so small that you can’t really interpret them.
<O

In regards to a health maintenance program when considering scans; how often to do them? Brain scans?

We don’t do any. I wouldn’t do any. Unnecessary radiation exposure. Just get a history, a physical examination and some blood work and that’s it, unless you have symptoms or an abnormal blood test.
<O

What about the brain?

Same thing. If you don’t have any symptoms you shouldn’t need a brain scan.



I (Barb) prefer at least a yearly brain scan.<O

[hutchibk]

We are learning and proving daily that commonly proposed "guidelines and standards of care" by all kinds of organizations and networks are obsolete and flat out wrong... and we are successfully proving conventionally held wisdom to be wrong, especially here on this site. Our experiences here will prove to be more than "anecdotal." Cancer, the testing of, the treatments of, and results of said treatments, are not one size fits all. IMO, applying that type of "generic" guideline to breast cancer as a whole (when we know there are over 100 types of breast cancers), and to the standard of care post primary disease, is proving to be antiquated thinking. I consider buying into the referenced theory to be like believing statistics about how long I will survive. It should not be taken at face value. Doesn't necessarily apply to the patient in treatment. It is merely theory. Sorry. I do believe in this case (and potentially other cases) the NCCP guidelines should be taken with a grain of salt.

Not to be ugly, but I am reasonably certain that the NCCP does not print the word/sentence "Duh." in their reports and findings. That is based on your own opinion/prejudice about what other people believe to be true, yet butts up against what your research indicates to be true to you.

[AlaskaAngel]

I know the conclusion that was drawn about whether or not catching mets early is based on studies. and I hope my questions about it are not personal.

But even so, the studies can also be based on opinion, depending on how the question is focused.

Again, I have to ask, if you have 2 populations in which treatment makes no difference, (as Barbara wondered too) is it because none of the treatments that are used are of benefit (or are of very little benefit)? If the question is focused only on "does the treatment make any difference if it starts sooner?" then you miss entirely the question "does the treatment itself make any difference?"

I think the topic is very important. We don't have the resources to give everyone who wants or needs extensive and expensive testing and treatment all that we would like to. How can we make the most of what we do have to spread around to make the most difference for the most people?

As I've said before, I tend not to believe that periodic brain MRI's should be routine for Stage I's like me without relevant symptoms. But I don't think that translates to "monitoring with tests to try to detect early mets makes no difference". This discussion started with markers. I believe in periodic regular markers for even those with early stage bc as a way of tracking with less expense than MRI's. Even though for some they don't work, as you can see by some of the comments of others, they are worth doing, for consideration in combination with lab tests like alk-phos, ALT, AST, etc. The HER2 serum test so far is not recommended for early stage, but I think testing with CA 27.29, CA 15-3, and even combining testing with CEA or CA-125 for some does make a real difference if the treatment works.

If treatment actually makes no difference in lengthening life or improving QOL (and even worse, makes QOL poorer), then that is a very, very important piece of information.

If more recent treatment is becoming more successful in a wider group of people, then earlier detection DOES make a real difference.

AlaskaAngel

[tousled1]

Alaska Angel,

You are correct that the HER2 serum test is not approved for early breast cancer. It is however approved for monitoring advanced and Stage IV breast cancer.

[Carolyns]

Why do so many early stage breast cancer treatment studies involve using TMs for follow-up for x number of years?

Carolyn

[fullofbeans]

On the issue of the benefit of detecting mets early:

Just a quick word I agree with Brenda, many guidelines are obsolete. And I agree with AA about asking the right questions.

Debbie it took nearly 20 years for scientists to prove that smoking was linked to lung cancer..some said it was even good for you! It is not because it is not proven that it is not a fact. I am sure that those that got the lung cancer when it was not proven and felt that it was due to their smoking would not have liked to be told in a very patronising way that they were just being silly to think that because it has not be proven..

On this site beware that you are talking to many people that are at the front line of dealing with mets or at high risk of recurrence and we know what artilleries has worked for us. To us that is what matters because we are quite simply talking about our lives and survival these are not "anecdotal" tales to us.

Just like intuitively people thought that inhaling some smoke may no be good for you. I intuitively know that detecting tumours when small will improve my survival for all the reasons mentioned above. Further more you will have less chance to have created another strain within your tumour that will eventually resist any treatment (besides the stem cell theory). As a stage 4 I do not have 10 years to wait for the new official review/studies.

If all we had to do was to read guidelines there would be no need for this site exept for the emotional aspect.

[Sorry for my reactive way of writing but this is your type of attitude Debbie very dismissive that nearly took me to an early grave. This is because I was unconventional and requested a scan+other stuff that I am now NED]

[Hopeful]

I was dx as Stage 1, and my surgeon and my onc differ on this issue. The surgeon has always wanted the markers, the onc has always maintained that for me, it is a waste of time. I have already had one test (Oncotype Dx) which provided a result that has cost me sleep, (although my subsequent research and the fact that Her2+'s were excluded from the TailorX trial, leads me to believe the test is not providing the same info to Her2+'s as it does to Her2-'s), the fact is that it still causes me anxiety that I would not have had if not for the test. I feel the same way about TMs. The issue to me is that they are not completely reliable for everyone. If they were, then the decision to use them would be a no-brainer. Since they are not, I do not want to be in a position of having additional anxiety and a battery of tests based on a marker level that may serve no purpose other than to make me miss time from work and increase my radiation exposure. Then, if the tests are all still negative, there remains the anxiety that something IS still there that has not been able to be found. Dealing with the mental challenge of this disease is in some ways more difficult than dealing with the physical challenge. I think we all need to approach this issue from the perspective of what gives us greatest peace of mind. If Stage 1's want this testing, and their doctors agree, then blessings and best of luck to them. Until there are fewer false negatives and false positives with TM's for my disease, I am satisfied to rely on the current NCCN guidelines.

Hopeful

Hopeful and I have had the same uncomfortable experience, although mine was with tumor markers, both CA 27-29 and HER2 Bayer. Very small cancer, Stage 1A, Grade 2, 20% proliferation rate. But then I opened Pandora's box asking for tumor markers to be run and found that both of the above markers were above the cut-off number. It didn't change my treatment options, but it did make me view every ache and pain as a recurrence. I've regretted for more than a year now having those markers run and will always regret it, as I've had a year of unnecessary anxiety. So far, knock wood, I've had no recurrence and my markers have gone down, although slowly. I'm not taking sides in this dispute as we each must do what works best for us, even if in some cases it doesn't follow national guidelines, but I know that if anyone at Stage 1 were to ask me my advice regarding tumor markers, I'd suggest she run the other way.

Carolyn, with respect to your question, I suspect the reason for taking tumor markers in studies that concern early breast cancer is to use that information to come up with guidelines. If these studies should determine that tumor markers hold a clue to future BC activity this information will find itself incorporated into national guidelines, but I don't believe we can infer from the taking of tumor markers in studies that it's a recommendation for the general population. What finally made me relax about my elevated markers was Dr. Pegram's statements about same, which were posted a few months ago in an earlier discussion.

[Mary Anne in TX]

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

[saleboat]

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

Just an alternative approach for those who do TMs.

[caya]

Saleboat and Grace,

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

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

all the best
caya

[Soccermom]

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

[dlaxague]

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

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

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

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

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

Respectfully,
Debbie Laxague

[dlaxague]

Alaska Angel said:
Again, I have to ask, if you have 2 populations in which treatment makes no difference, (as Barbara wondered too) is it because none of the treatments that are used are of benefit (or are of very little benefit)? If the question is focused only on "does the treatment make any difference if it starts sooner?" then you miss entirely the question "does the treatment itself make any difference?"

Debbie now: Hi AA, nice to be having a discussion again. I'm not sure I'm understanding the question. It seems to me to be two entirely different questions. I've beaten the first one to death and had better not go there again.

The second one, "does the treatment itself make any difference?" is a question only answered with hindsight, right? Usually yes, the treatment makes a difference. Sometimes a huge, near-miraculous difference, sometimes a small one, sometimes (alas) apparently not any difference.

This working/not working has to do with some things that we know (HER2, ERPR, etc) and probably many many things that we do not (yet) know. In general, each successive successful treatment works less well, or at least less long.

In fact, relevant to this thread, it could be argued (and is currently being argued on the bcmets list by those much more knowledgeable than me) that there is benefit to waiting for symptoms of progression even with mets, rather than relying on TM's or scans, to know when to change treatments. This is not true when a treatment is causing significant side effects because it's best to abandon it soonest so as not to cause suffering or inflict damage while providing no benefit. But metastatic disease that does initially respond to treatment can be left unmonitored except for symptom report, just as the guidelines recommend for after primary disease. Why? Because that is the best way to extend each "tool". Some women with mets look at their options as tools in a toolbox. They prefer not to use each tool until they are absolutely forced to do so, because that way the limited supply of tools will last longer. This is not an approach that suits everyone's temperament, but it's one perfectly reasonable approach.

Debbie Laxague

[AlaskaAngel]

I don’t like to think that anyone who is polite would not find this site worthwhile. I especially value the thoughts of those who have spent time and effort to dig into the mysteries of cancer and are willing to take on controversial subjects.

Unfortunately, cancer really bites hard, and most of the time no one is around to explain the pieces or answer the confusing questions that we have at the time when we need to know the answers most. We get banged up trying to find a way to intelligently and civilly work our way through it. In my opinion, those who have mets early on are working with a very different clock than most of the rest of us are. They learn fast that survival is much more dependent on realizing internally that the standard guidelines are only a rough attempt to guide treatment that is known not to work very well for many if not most, especially for mets.

This is why some of the most remarkable survivors are still here with us. I’m talking about the women who didn’t follow the guidelines and instead are finding ways to be part of the development of better treatments. Those kinds of choices are hard to make, and there are neither certainty nor impartial professional mentors to cuddle them through it. They have had to “break” their mind and go against the advice of the “national guidelines”, and still live with the natural doubts they might have about doing that. There is little if any support at all for them. They’ve had to get past that. Whether their choices prove to be right or wrong, whether they live 6 months or 30 years, the guidelines are based on research done years ago and as one mentioned, their clock isn’t going to let them live by the guidelines.

If I were one of them, it would be important to try to tell that story so that others can benefit and find their way through it all with less pain than they did. It isn’t just a matter of them by chance beating the odds.

As anyone who has been on this site over the years can verify, a short fuse for me has been the way that the Lost Regiment of HER2’s were treated while the “experts” stampeded by us to offer Herceptin to every newly diagnosed HER2. THERE WERE NO GUIDELINES FOR US, just DEAD SILENCE by the “experts”. You will find a number of the Lost Regiment here took it upon themselves to push themselves and their oncs to start Herceptin anyway. I too believe in civility and would not want anyone who has participated in the discussion to be uncomfortable, especially not someone who has so much to contribute and has contributed so much in the past.

AlaskaAngel