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Oncotype DX Test: What does it all mean?
Breast Cancer | Last Active: Jun 14 11:03am | Replies (36)Comment receiving replies
My wife was diagnosed with a ductal carcinoma last August, with 2 lymph nodes involved. She is ER+, HER2- and carries BRCA1 gene. She had a bilateral mastectomy, followed by 6 chemo cycles 4 weeks apart. She also had the Agendia genetic test carried out on tumour tissue which places her in the 'high risk' of cancer returning. How does that test compare to DX please?
She is now taking Tamoxifen and at 45 can't live with the side effects and is now determined to stop taking it. I thought she would benefit from a PARP inhibitor (Olaparib) but she does not meet the requirements (1 less lymph node involved than required). However, looking at the statistics for those with bilateral mastectomy, it appears that Tamoxifen only provides roughly 1.35% additional reduction in risk - the main benefit being for those who have had a lumpectomy or single mastectomy. 10 years of Tamoxifen, with the noticeable and potential long term side effects for a 1.35% benefit in risk reduction does not seem to be of real benefit given the overall effect on quality of life. Is it the case then that she is right to want to discontinue this treatment, and rely on annual checks instead, her decision is worrying me more than it is her?
Replies to "My wife was diagnosed with a ductal carcinoma last August, with 2 lymph nodes involved. She..."
I know from watching my husband that it can be as hard to be the caretaker as to be the patient. Although he and I both wanted objective information there came a time when I needed to make decisions based on my overall health and preferences. I know this was difficult for him as I wasn't doing "everything" to treat the cancer. We had some couple's counseling to discuss this in a supportive setting. And we still use some of those talking/listening techniques on our own. So I don't feel that there is any ultimate "right" way to approach breast cancer. I'd suggest that you and your wife share maybe with a third person there--clergy person, therapist, or even trusted friend. Going forward, for me, was as much about communication as it was about treatment. Hope this helps.
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@johndalton did your wife have the Oncotype DX or other genomic test like Mammaprint? These are different from genetic tests. The Oncotype report tells us that risk is cut in half by taking tamoxifen (aromatase inhibitors were not used when this test was first in practice so that my risk went from 12% to 6%. Where did you get the 1,35% figure (what is your source)?
On what basis was chemo prescribed? Were her estrogen and progeesterone scores low? Did she have a lot of positive lymph nodes? (The Oncotype is still done for up to 3 positive nodes.
If she did not have the Oncotype DX, she can still have it- the specimens are in storage and can be sent to Exact Sciences, the company that does the test.
I did 5 years of an aromatase inhibitor after doing another test called the Breast Cancer Index, which told me both risk and whether continued hormonal therapy was beneficial. I came out high risk (5.7%) but no benefit from extending the meds so I stopped. Your wife might be able to do 5 years. I have read that 7 is as good as 10 and wanted to do that but after the test, I stopped.
With a double mastectomy, I got checked for 5 years with a manual exam but after that no checks and no oncology appointments, even though risk continues to go up with hormonal cancers. Your wife might benefit from knowing that it isn't all that easy to check over time.
Any reason she is not coming on this forum herself?