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New protocol when NED: no tumor markers
I am 8 years out from DX and 6.5 years out from my last Herceptin. I am healthy but still see my oncologist twice a year. On my last visit April 2014, I was told that I would not be getting tumor markers anymore. If I understood correctly, they are no longer the "gold standard" if you are NED. I think I will call back and ask a few questions. Does anyone know about this change in protocol? Is it because it has been so long since treatment? Is it because of my age? Are others still getting tumor marker numbers? If I recall correctly mine was always around "7". Thanks for any information you can share.
Happy Memorial Day Weekend! |
Re: New protocol when NED: no tumor markers
My MO does not do markers. Have never had one done. Many docs think they are unreliable. I dont believe they are standard of care
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Re: New protocol when NED: no tumor markers
Hi Catherine,
I think it depends on whether the tumor markers have been reliable for your specific situation. In my case I do tumor markers once every four-six weeks. The tumor marker has been for me a wonderful tool along with regular Ct-Pet-Bone scans. Based on both; tumor markers and scans, my doctor and I have worked closely by choosing chemo drugs we both feel would benefit me. Interesting topic. Thank you for posting. Adriana |
Re: New protocol when NED: no tumor markers
Hi Catherine,
Right after chemo mine were high but settled down after a short time and have remained in the range like yours, generally between 7 and 9. I am so far out now that my PCP would continue to do them only yearly. But a 15-3 is being done routinely as part of a clinical trial I participate in, which is reported to him, so he just uses the report from that. (I haven't been to an onc since 2006 - and remain NED.) |
Re: New protocol when NED: no tumor markers
My CEA, not 15-3 or 125, has always been an accurate tracker for me. If the CEA is up, so is something else.
Karen |
Re: New protocol when NED: no tumor markers
Hi Catherine, my Onc has never done tumour markers and the only time my blood is checked now is before a routine Zometa treatment once a year.
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Re: New protocol when NED: no tumor markers
I no longer see an on oncologist. My GP did tumor markers if I requested. Now I no longer request...my oncologist always thought they did not mean much even though they were always a part of routine blood work pre chemo and herceptin.
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Re: New protocol when NED: no tumor markers
I have worked in Oncology for 25 years. I am in the billing department with a laboratory technology degree my medical knowledge was needed in the billing area. It was my job to
to document how chemo and procedures such as laboratory tests are covered by each insurance company. Per my MD's tumor markers are really only useful for following response to treatment. Usually by the time you have a spike in your markers they already know of issues discovered on other exams. So if there is no evidence of disease most insurance companies won't cover the test. |
Re: New protocol when NED: no tumor markers
Catherine, as far as I know, tumor markers have never been the "gold standard" for follow-up after treatment for primary breast cancer. The reasons for this are basically twofold:
1. They are unreliable: either not showing anything upon recurrence, or showing random false positives (leading to anxiety and invasive testing when there is no recurrence). 2. (probably the more-important bit) It has never been shown that picking up a recurrence with tumor markers (or imaging), before the recurrence is found because of symptoms improves the outcome (life is not prolonged nor improved). It's a whole different discussion, about tumor markers for following disease (and/or response to treatment) for already-existing stage IV breast cancer. For some, tumor markers are useful in this regard. For others, the cancer doesn't elevate tumor markers even when it's widespread, so they are not useful for these women and men. That said, it is true that many oncologists (and/or patients) do choose to draw tumor markers on some regular basis after treatment for primary breast cancer. I would guess (as others have mentioned) that your onc's change in his/her practice relates either to a buckling-under to the national (NCCN, in the US) guidelines, to insurance coverage (or more-accurately, the lack of it), or to their facility's move to standardize practice to be in line with "standard of care". Everyone has different feelings about this. For me, I was relieved to learn that it was not ultra-vigilance that might make a difference to what would happen to me after treatment for primary breast cancer. That understanding allowed me to let go of the illusion of control and learn (sometimes kicking and screaming) to deal with the uncertainty. I learned (over time) to accept that it is essentially a crap shoot, and that if I had a recurrence -- how it was discovered would not affect the outcome. The disclaimer here is that it is arguably of benefit to detect brain mets "early" (before symptoms) so that less-invasive treatment (targeted radiation vs. whole brain, for example) may be used. And we know that HER2+ breast cancer is more likely to result in brain mets. I think there's a strong argument for finding ways to monitor for brain mets of HER2+ breast cancer, both after primary breast cancer and stage IV diagnosis. But the best way to do that is probably with imaging, not tumor markers. |
Re: New protocol when NED: no tumor markers
In reference to tumor markers and brain mets.
My CEA was elevated out of normal range and the only thing that was moving cancerwise were two brain mets. The rising CEA caused other scans, but since I had no symptoms and had a clean brain MRI a few months earlier, my brain was the last place we looked! Our founder Christine had the same situation with CEA rising along with a new brain met. I did not know that until we had a converstion about our experiences. Or I might have mentioned "my brain" earlier. Not everyone gets CEA checked as it is not specific to breast cancer, but my original med onc had a hunch I should have that once I joined the stage IV group. |
Re: New protocol when NED: no tumor markers
Thanks for that, Steph. Wouldn't it be perfect if there were a reliable marker for everyone, to announce brain mets and spur further diagnostics and allow early/easier treatment options? It seems like, since the brain is so different, there MUST be some neuro-secretions (I have no idea if that's a word, but you know what I mean) that could be used as a marker in a blood test.
But as it stands so far, I think all the existing markers are equally unreliable. Elevated with some cancers and not with others (plus elevated by things other than cancer), so that as a screening tool, they are not very useful. I'm glad that CEA made a difference for you and Christine, and I hope they can find something similar that makes a difference for all. Lani posted a study of PET/MRI vs. PET/CT which includes a bit about brain mets detection. Full body scanning is overkill for brain mets/this discussion but still, there may be some hints there. |
Re: New protocol when NED: no tumor markers
Looks like we've past the tumor marker era ...
World J Clin Oncol. 2014 May 10;5(2):48-60. MicroRNAs in pathogenesis of breast cancer: Implications in diagnosis and treatment. Shah NR, Chen H. Author information Abstract MicroRNAs (miRNAs) are small non-coding RNAs generated by a two-step complex process and are post transcriptional negative regulators of their target mRNAs. Dysregulation of many of these miRNAs has been associated with tumorigenesis in various cancers including breast cancer. Aberrantly high expression of specific miRNAs in breast cancer cells is demonstrated to be linked with inhibition of tumor suppressor genes and promote tumorigenesis. They are classified as oncogenic miRNAs. However, the tumor suppressor miRNAs are downregulated in breast cancer cells, since their major targets are oncogenic mRNAs. Understanding mechanism of action of specific miRNAs in breast cancer cells can be utilized to develop newer anti-cancer therapies. Recently, newer techniques are also developed to detect abundance of specific miRNA in the blood plasma samples and can be used in early diagnosis or prognosis in breast cancer. In this review article, we have discussed several miRNAs dysregulated in breast cancer and their therapeutic potential. |
Re: New protocol when NED: no tumor markers
Thank you everyone with the information you have posted. Over the years since my treatment has been over, i have tried to keep a bit up to date with current treatments. My research and knowledge has not been half as good as some of the very smart and experienced members of our site. What was the cute name we called these bright people? Motor heads? Brainiacs? The tumor markers I used to have was the CA 15-3. You have answered my question and I get it. The test is most helpful at the beginning of the BC journey. A test that is not necessary or overly reliable at this point.Once again my Her2 friends have helped me out. You are all awesome!
Hugs and thanks! |
Re: New protocol when NED: no tumor markers
Perhaps I should add that my markers were not elevated at diagnosis. Entirely within the normal range... So I guess they would not be reliable for me.
The "gold standard" here in the Netherlands has always been - or at least for the past 10 years, since my diagnosis - that they are only used to monitor treatment efficacy in advanced BC. May you never have to worry about breastcancer again! Jacqueline |
Re: New protocol when NED: no tumor markers
Dear Ladies,
I started reading this topic thinking that I might be able to add to the discussion, being a pathologist - but you smart ladies have stolen the words out of my mouth. What a fantastic community this is! Aussie Girl |
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