Routine marker testing and recurrence... worth it?

[fullofbeans]

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.

[hutchibk]

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.

[AlaskaAngel]

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

[Lani]

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."

[Lani]

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.

[hutchibk]

Well, there you go.

[dlaxague]

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

Measuring circulating extracellular domain of HER2 is not currently
recommended for any clinical setting. There is no change from the

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?

[hutchibk]

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.

[dlaxague]

Not wrong, that's a correct quote, but just not all of it. Somewhere it says in the short version that some of the markers have limitations or are only for certain circumstance (my words, not their, I'm in a rush). Here's the quote from the full article, about primary f/u using CA 15-3 and CA 27.29:

CA 15-3 and CA 27.29 to detect
recurrence after primary breast
cancer therapy

Present data do not support the use of CA 15-3 and CA 27.29 for monitoring
patients for recurrence after primary breast cancer therapy.

There is no

change from the guideline published in 2000.

Formatting lost, as usual. And the discussion, which I'm just now reading, between fixing dinner chores:

2007 recommendation for CA 15-3 and CA 27.29 to detect recurrence
after primary breast cancer therapy.

Present data do not support
the use of CA 15-3 and CA 27.29 for monitoring patients for recurrence
after primary breast cancer therapy. There is no change from the
guideline published in 2000.

Literature update and discussion.

Several well-designed studies
have shown that an increase in CA 15-3 or CA 27.29 after primary
and/or adjuvant therapy can predict recurrence an average of 5 to 6
months before other symptoms or tests. While additional studies have
been published since the last ASCO guideline that address the value of
these serum markers at detecting recurrence,11-16 there are no prospective
randomized clinical trials to demonstrate whether detection
and treatment of occult or asymptomatic metastases using tumor
markers impact on the most significant outcomes (disease-free survival,
overall survival, quality of life, toxicity, or cost-effectiveness).
Although the assay was approved by the US Food and Drug Administration,
theUSFood and Drug Administration does not require tests
to show clinical benefit if that is not part of the manufacturer’s indication.
Given the limited evidence, and until clinical benefit is established,
present data are insufficient to recommend routine use of CA
15.3 or CA 27.29 for this application. This recommendation is in line
with that of the ASCO guideline for follow-up and management of

patients with breast cancer.9

Debbie again - There's another disclaimer that you'd like, about individual judgment and the recommendations not being always the best for individuals - use my link and read the whole thing, it's fascinating, at least so far.

[hutchibk]

Debbie,
Goodness. I suppose you have parsed the report to the inth degree and proved your point if that is what you are hoping to do. You are "righter" than I am if you need to be. I retract "well there you go" response because I am only partially correct at reading the conclusions of Lani's 5:15 post. You win when it comes to interpreting and agreeing with generalized studies and NCCP, ASCO, etc guidelines.

Thank goodness you don't go to my doc. He would drive you crazy with his desire to treat outside of strict guidelines.

[Lauriesh]

I wanted to add that I know a woman (a young woman) who only discovered her bone mets after her hip broke and she needed a total hip replacement, which was the scenario that Brenda's onc referred to.

To Debbie, what do you say to her. How do you argue that finding her mets early (say as just a spot on her hip that showed up on a routine bone scan) wouldn't have improved her quality of life.

Is her case rare? yes it is. But it was also rare for me to get breast cancer at 37, with no family history. I get tm and routine scans because while it is rare, I do not want to be like this woman. I have three little kids and I don't want to be in a wheelchair for the rest of my life.

I think there are more onc's like Brenda's out there and it will only be a matter of time before research and studies reflect this newer thinking on catching mets early.
But until then, I am looking out for myself.

Laurie

[Becky]

I will be at SABCS as well.

[fullofbeans]

The uncertainty of sciences can be a frustrating concept at best of time but is a concept that is especially difficult for us to accept since we would like definitive answers.

Just like a chemo works for some and not for others we have to accept that until now there are no bullet proof TMs.

In the meantime what is a girl to do?, well I will no longer go there;-)

[dee]

From a tiny member of the Silent Majority... - I suspect your collective thoughts and writings on this major subject have been tiresome to some of you involved, as 'evidence' from the narrative would indicate. For us, it's been invaluable. Thanks for your risk taking behavior. We appreciate your dialogue!

Dee

[newgg]

Agree with Dee and from another member of the folks that read this board every day......all you risk takers give the entire board....you give us POWER! And we will not "should" on ourselves or each other. What we should or should not do ....that goes directly go our personal decision and our individual comfort zone. BUT.....we all need many pieces of the POWER pie to travel this journey. Some have all these power pieces...you know: Power of faith, Power of family, Power of modern chemicals, Power of strong support, Power of attitude and here we get the Power of Knowledge !! We do not have to agree and we can agree to disagree. These discussions give all of us added resource to our Power of Knowlege. There is NO other place to learn more about HER2 serum, power ports, cyber knife, chemo combos, crazy hair, shared giggles and love. Thank you, Thank you, Thank you....for the info and discussion and the POWER ! Keep it up !!! Hugs, Bonnie
PS....my personal comfort zone is to do the markers.

[hutchibk]

Now, it isn't necessarily reflected here, but just so's youse guys know - Debbie (dlaxague) and I do have a lot in common and are friends behind the scenes... we both like potatoes, love the Four Agreements, and are pretty adept at feisty debate! LOL. I try to reserve debate for the subjects I am really interested in and feel I have something valuable to offer as I believe she does, too. This thread forced me to do some clinical research (in my doc's office...ha) and I learned a lot. Thanks for putting up with us and our diversity of info and beliefs.

[StephN]

Hi everyone -
Should anyone wish to read further on this subject ...

In scanning once again this thread I saw the words "decision tree" someplace and now can't find it. These words triggered something deep in my memory and I went in search.

BTW - before I get into that, I want to mention that the NCCN is having a conference in La Jolla on Nov. 7:
http://www.fhcrc.org/patient/treatme...hKind=clinical

In which they will take up the subject of Guidelines Overview and Update on Quality Initiatives. That item is first on their agenda.

Ok, back to the original thought. When I was diagnosed I recall going over some treatment guidelines with one of my practicioners. Hunted in my folder of early info gathered at DX and found "Breast Cancer Treatment Guidelines for patients" Version III, June 2000, a 51 page booklet. A joint publication of the American Cancer Society and and the NCCN. There are chapters with Decision Trees for every stage of BC. AS well as "Follow-up/Recurrent Cancer."

Each passage which pertained to my original diagnosis is marked. When it came to the Decision Tree I found my stage, my pathology and the general treatment options (they were very general). In the "follow-up" section the info is scant and basic as to how many exams per year, length of time between mammograms and what to do if you are on Tamoxifen. Got much more specific as to work-up for a suspected recurrence, bone pains, etc.

These decision trees are basically OUTLINES of how to proceed for various types of BC. In the version I have there was nothing about what NOT to do for followup.

I know this is "old" information, but the fact that it was SO GENERAL is what I want to point out. At that time it seems to be left up to the oncologists to decide what was best for any particular patient, and may be why so many of our doctors STILL are not in lock step with whatever guidelines have come out in the meantime.

In explaining my particular "scary" diagnosis to my family and friends, I found this booklet very helpful as it was succinct and had easy to follow visuals for each stage. I had to flesh it out with specifics of my own treatments, but the "why" was there in black and white.

I don't find these trees on the NCCN site, but you have to be a member to have access to it all.

[Mary Anne in TX]

I don't have a clue just where the "trees" are, but I went through them over and over when I was first diagnosed. As I read your post, I remembered that when I first began to search the "trees", I was so hoping for more detais! But over time I saw the wisdom too in the options left to those who cared and cared for us. As I traveled back in time I had the opportunity of be so grateful for the options my onc chose for this ol' gal! Thanks Steph. ma