Aromatase Inhibitors: Did you decide to go on them or not?

My oncologist(s) and endocrinologist cite the breast cancer industry thinking that aromatase inhibitors can reduce the risk of recurrence by approximately 45%. With that current thinking, your risk of recurrence if you do not take them is approximately 6.5% if the OncotypeDX score is valid. (My doctors think it is.) I don't know if that helps but gives you a "if I don't take aromatase inhiibitors" framework. Oncotype's customer support is very good and can describe more.

The good news is how quickly the understanding and treatment of this is evolving. I agreed to a sentinel node biopsy only because it would be another data point and maybe good news, which it was. Imagine how much more science will know and lives saved in the near future.

I talked to them a lot in 2015 when I was diagnosed. With grade 3, high ki67%, lymphovascular invasion, and ambiguous HER2 (only definitely negative in one out of 4 tests), I was troubled by doctors' reliance on the (newish) Oncotype but would have struggled with chemo. And my cancer was highly hormone-positive. Now, 7 years later, even treatment for metastasis avoids chemo as much as or as long as possible when ER+.

Alas, I don't see a differentiation between local disant recurrence and spread. The senior member of the science team at Oncotype told me they tend to think the risk score covers both IF the tumor margins were adequate and clean but their legal counsel recommends against making such a statement. I think it's interesting that they also discover undiagnosed invasive cancers sometimes. The cells behave differently when tested and they've had to notify doctors to re-examine the patient and rethink recommendations for treatment. Talking to the people at Oncotype was very informative and welcome.

Nice to read good news. I came upon a post related to the thread question here. For those interested, search for rpierro message dated May 20, 2018. At the time of posting, she was a 20+ year survivor of breast cancer who had not taken Tamoxifen. The majority of women did not get a recurrence of breast cancer even though one is too many of course.

Phoney, that should read 'dried plums'! Lol

Thanks for the dried plumbing mention and source. As for anastrozole, I only took it for 7 weeks and stopped when i developed a first-time limp and difficulty putting weight on my right leg. I just don't like the othet side effects and quality of life, being old now (which is also a surprise, lol) and willing to hope the low risk from the genetics test is valid. And after seeing two oncologists who also thought me at low risk of recurrence. But age and actuarial likelihood of years remaining, and a preference for sailing over dealing with any unnecessary drugs, weigh heavily in a personal decision.

Absolutely. Right there with you - with your thinking. I had DCIS in 2004 and had a lumpectomy. No radiation but was prescribed Tamoxifen for 5 years. Took it for 3 1/2 years w/o any side effects , but at the 3 year mark my hair started breaking off and thinning. I researched and many ladies had the same thing. I discussed w/ my oncologist. He said ‘oh no , Tamoxifen doesn’t cause that’ (I didn’t say I’d read several posts about on internet, as I knew he was the type to poo poo that). He said - take a vacation from tamoxifen for a few months snd if your hair improves, then just stop it, but if it dies not make a difference, finish out the 5 years. I stopped for several months and hair really improved so I stopped it. My oncologist’s recommendation was not scientific, not based on much of anything other than had seen me 6 or 7 times over the 3+ years. He either knew it affected hair and/or my surgery outcome (totally clean margins & DCIS was very confined and very small ) was not a high risk. I don’t know.

Great information. Aromatase treatment is for 5 years; however, is there no benefit after 2, 3 or 4 years. Many stop treatment early because of side affects. Does that mean they have gained nothing. Others do the full 5 and end up with serious health issues. I myself would not have known the internal side effects if I hadn’t started having fainting issues. Though informed of my family history, the oncologist did not do any testing either before or after to note changes, such weight gain, hi BP, cholesterol etc. Now it very tough to pin down the cause. Try though I may, I have not found numbers in percentages of benefit of the drug at year 2, 3 etc. It seems at the 5-year mark the benefits arrive, not before. After 3 years, why isn’t a patient told you have gotten some
benefit or is there none until 5 years?

One thing my onco-radiologist mentioned to me was: even though my risk of recurrence is 5% with the AI's and 6% on Tamoxifen (which I'm on) in the next nine years and my Oncotype score was 17 so no chemo. That said my tumor grade was 3 so when I was struggling with side effects from the AI's and I spoke to him he said "try to make them work due to the aggressiveness of your tumor. So although it was caught early, was small IDC I've been strongly encouraged to continue working through side effects (not as many for me with tamoxifen) and stay the course!

Has anyone on this chat board been made aware of the big discovery by U of I Urbana of the ErSO molecule that eradicated tumors in 3 days in mice and dogs and Bayer licensed it and intended to do clinical trials and it just disappeared with a small statement from Bayer about not moving forward with clinical trials due to "more scientific research" which of course needs to be done but sounds like they aren't moving forward with the testing of the drug....