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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
Many thanks for your reply. My wife had the Mammaprint genetic test by Agendia, it places her in the 'high risk' of recurrence group, with a risk factor of 21%. The 21% was the basis of her having chemo. But again after double mastectomy I am unsure there would be a significant benefit from chemo. The problem is Oncologists seem very rigid in following the approved standardised regimen, and are not really open to discussion about it (we tried 4, in 3 countries and every time it was like banging your head against the wall)
However, she has had a bilateral mastectomy. Cancercentre.com and others confirm that:
"double mastectomy lowers the risk (of the cancer returning) by at least 90%.
If you have a disease-causing mutation in the BRCA1 or BRCA2 genes, the risk reduction is about 95% (my wife has BRCA1)
So this represents a 95% risk reduction of the remaining 21% had she opted for lumpectomy (a 1.05% risk of cancer returning overall). Even ignoring this and working on the remaining 5% risk after double mastectomy, the 12% reduction in risk on the 5% is actually just 0.6%. This however is just math, there do not appear to be any studies on those who have had double mastectomy and the additional risk reductions provided - at least I have not been able to find any (not for want of trying). All I can find simply says something along the lines of 'double mastectomy cannot guarantee that all breast tissue cells are removed, so patients should still follow a course of Tamoxifen'.
I appreciate it is not all that easy to check over time, but the real question is long term quality of life vs overall benefit to life expectancy with the tamoxifen. An additional consideration is the rapidity of development of new treatments and new testing capabilities. She will have an annual MRi or PET scan and blood tests, which combined should offer quite a good standard of monitoring, at least until she is beyond her menopause.
Throughout her treatment she has asked me to do the research, find answers, and question what medical professionals have told her. She has instead preferred to focus on recovery and wellness, and I have to say I find the way she has dealt with it and recovered truly remarkable. She puts it down to mindset and having not had to dwell on the disease and treatment. I did however end up having a complete breakdown towards the end of it, so perhaps I took some degree of the burden from her and shouldered more than I could cope with.
Replies to "Many thanks for your reply. My wife had the Mammaprint genetic test by Agendia, it places..."
That’s quite a load on your shoulders, standing beside your wife through this all, and being the gatekeeper of best practices and latest research! So overwhelming!! Spouses have a tough job of wanting to help but not able to cure it.
Many of us think of this as a journey. It’s a new realization that when initial treatment is completed you’re not done. And we each decide what level of vigilance we need to move on.
If no tamoxifen, you might need to set a goal of something like re-looking at the latest research every 3 months so that you can try and set aside the constant worry and have a plan, that is somewhat acceptable under the circumstances.
I use ScienceDirect.com and Nature.com to send me weekly or monthly updates on topics I can choose. They often have new research before it is posted on medical org sites.
You might also see if a bone density med is needed. There are some, like Reclast, that can harden the bone against metastasis. Just a bit of help for prevention. There are studies now that some statins also reduce metastasis. Sorry, I’m adding to your research list.
Keeping you and your wife in my prayers!
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You are not the first spouse to come on this forum, sharing the burden. Sorry for what both of you have gone through and are going through.
If her breasts are gone, what MRI is going to be done? My doctors did a manual breast exam twice a year for 5 years and then no monitoring, even though risk goes up with hormonal cancers. Curious what her doctors are doing.
I was told it was not so much whether cancer cells escape (we all have cancer cells circulating that our immune system takes care of) but the ability of those cells to implant and multiply. I had lymphovascular invasion which shows that. I know she had positive nodes so that shows an "ability to travel" (as my oncologist put it). Was her tumor grade 3? High ki67%?
Did she have radiation?
This link recommends the Oncotype vs Mammaprint and I don't know how to understand the Mammaprint value https://ascopubs.org/doi/10.1200/JCO.22.00069 She can still have an Oncotype to evaluate risk. But chemo is already done so not much point. Oncotype mainly focuses on whether chemo is of benefit (but also gives risk with and without tamoxifen with risk halved by the med.)
My attitude was, suffer for 5 years for the sake of having a lot more years ahead. Easy to say, hard to do. As it turns out, since I did aromatase inhibitors, I also had to follow up with some years of bone meds which have been harder for me than the cancer meds. At least tamoxifen doesn't harm bone density.
But if she is suffering, is there an alternative? I would encourage somehow finding ways to manage side effects if possible. I read that surgeons should never say "we got it all." With positive nodes, as with my LVI, there is some risk that competent cells did escape, presumably- at least my doctors were pretty strong in recommending medications.
I am just another patient sharing my experience. I got 4 opinions. If you or your wife want another opinion, doctors are very open to that!