When to test for tumor markers

[derbygrrl]

I was diagnosed with extensive DCIS (over 7cm) in April 2014. The pathology showed grade 3, comedo, highly differentiated and other aggressive characteristics. After a bilateral mastectomy they found a small IDC And I tested HER2 positive with 0/3 nodes positive. I received 12 weeks of Taxol and am in the process of getting Herceptin every 3 weeks for a year. Now that the surgeries are behind me and I am back to work, I am finding that the what-ifs are starting to scare me. One of the things worrying me is that the original microcalcifications were found 2 years before I followed up with another mammogram where it had spread into another quadrant and grown to over 7cm. My mother was diagnosed with a small IDC 6 years ago with 0 nodes positive. She had a lumpectomy and chemo and rads then they accidentally discovered liver mets and she died a year later. I did have the BRCA testing because of my family history and young age (37 at dx) and they did not find anything in the genetic testing. It scares me that she was node negative with mets. I asked my onc how I would know if I had a recurrence and he said just let him know of any symptoms I have - that if it metastasized it wouldn't really matter when they found it. He has never tested tumor markers or performed any scans. I am wondering if this is something I should ask for or just wait and see like he recommends. He claims tumor marker testing is unreliable. What are your thoughts or experiences in this area?

[Lucy]

I would ask about the testing, worse thing he could do is say no. Maybe if you express your concerns and why you'd like the testing done, he would do it. I recently had some blood work done that showed some elevations that could be problematic. Initially I was told it was the result of a supplement I was taking (which everyone - myself included - still thinks and I hope is accurate). My PCP told me to cut back on the supplement. The doctor that ordered the tests said I should cut back on the supplement. When I told my oncologist, she said that I should follow up with whoever prescribed the supplement and/or whoever ran the test. I responded that down the line I didn't want there to be an issue because everyone thought it was a supplement issue and/or that it was someone else's problem to follow up on. I'm now scheduled for scans next week - ordered by my oncologist. Bottom line is you have to be your own best advocate in these matters. There's a lot to be said for the peace of mind of knowing. I hope he'll do the tests for you. Let us know how things go. Sending cyber hugs to you.

[jaykay]

Don't they do bloodwork (including tumor markers) every 3 months along with an echo during the time you're still on Herceptin? Honestly, it blows me away how inconsistent all the follow up is globally.

I finished chemo in March 2013 and Herceptin in October 2013. I still go to my Onc evey 3 months for bloodwork, exam and tumor marker (ca15-3). She will probably move me to 4 months soon. I have had cancer twice, though

Janis

[Jackie07]

I've seen/read several long-time stage IV sisters reporting in their signatures/postings changes of their tumor marker(s). A few would emphasize that their tumor marker had been very reliable. A lot of doctors take the same view as your doctor that it's not yet a tool for monitoring tumor progression. Below is the abstract of a recent article on the subject:

Curr Mol Pharmacol. 2015;7(1):4-21.
Targeted pathways in breast cancer: molecular and protein markers guiding therapeutic decisions.
Kourea HP, Zolota V, Scopa CD1.
Author information
Abstract
Breast carcinoma is currently considered as a group of diseases, differing not only in histopathologic phenotype, as indicated by histologic type and grade, but also in their protein, genetic and epigenetic molecular profile. The standard of care indicates that the core information for patient management includes data on Estrogen Receptor (ER), Progesterone Receptor (PgR) and Human Epidermal Growth Factor Receptor 2 (HER2), while there is an emerging role for the proliferation marker Ki67. These indices can be provided even in low resource settings and are indispensable for prognostication and therapeutic patient management. With the progress in molecular and translational research, there is a growing body of information on the molecular subtypes of breast carcinoma and their significance, and multigene signature assays are used to dictate prognosis and guide therapeutics in high resource settings. In addition, several cellular pathways involved in tumor growth and spread are dissected and targeted in clinical trials. Among these are the p53, RB, PI3K/Akt/mTOR and Ras/MAPK pathways, alterations associated with genetic instability and epigenetic alterations including histone methylation and acetylation, DNA methylation and microRNAs expression. The tumor immune microenvironment, including the tumor infiltrating lymphocytes (TILs) is attracting significant research interest. This review summarizes the mechanisms of function of the above factors in breast tumorigenesis with emphasis on their prognostic and predictive value and their use as therapeutic targets.

[KathyT]

My oncologist goes by my symptoms as well. I just finished my last Herceptin treatment this week and I had an appt with him. I asked about drawing tumor markers and he doesn't typically draw them because he feels they can fluctuate and give people more anxiety than needed. He was open to ordering them though if I insisted but I don't want the added anxiety and if they are controversial I am fine with not having them drawn(I do get CBC and Chemistry panel regularly though). I had not have an ultrasound, MRI or Pet Scan since this whole thing started January 2014, so I insisted that he order me a pet scan being it was my last treatment of Herceptin and I want peace of mind that everything is good! He wouldn't have ordered it for me if I hadn't asked for it. I agree you need to be your own advocate and maybe it's as simple as asking. If your MO refuses to order anything for you and you are not ok with that I suggest you find another onc that will work with you more. Best of luck!
Kathy

[JessicaV]

Hi,
I recently asked my oncologist for C15-3 testing, and she agreed to do it. I told her first that I know it gives quite a few false negs by missing local mets and some distant ones too, and false positives because BC is not the only cause of a rise in level. She said she has a small group who have the test done every six months.
But she asked me to promise to tell her honestly if I ever find it makes me more anxious to have the tests and to wait for the results. I gather this high test-anxiety is a big part of why they do not regularly do more tests after herceptin year finishes. I also gather that the protocol for post-treatment testing has been set so low is because of this anxiety and because 80% of cancer patients do not have HER2positive cancer, so do not have up to 50% chance that their mets will include brain mets which need to be found asap. Other BC mets (I am told)are generally treated with chemo or hormone treatments and size at diagnosis is less of an issue.
Also with non-HER2pos cancer, mets are less likely and are also not concentrated into mostly happening in the first 3-5 years post surgery, so could happen any time. So monitoring is less needed, but they are the bulk of BC patients, so general BC protocols are more likely to be established with them in mind.

My advice is to read up about C15-3 and other markers, and go to see your oncologist ready to discuss why this is a good idea for you. Best wishes.

[derbygrrl]

Thank you for sharing your experiences and perspectives! I had to call my onc's office anyway this morning, so I asked if they would be willing to test tumor markers or do a scan to give me some peace of mind. He is out of the office today but I expect to hear back this week. My next appt is early March. I am even more concerned about mets now as my latest echo came back borderline normal so I'm hoping I will be able to continue with the full year of Herceptin.

Anyway, thanks again! I am so grateful to have this support group!

[Becky]

I am over 10 years out and still get the 29/27 tumor marker done. I go every 6 months. Its just the way my onc's practice is.