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

"Implicit unanimity." Brilliant! And yes, avoiding regret and second guessing was one of my goals. Thanks for the great perspective!

I'll find the studies and send you the links by message if that's OK. As to what you're experiencing, hopefully this is temporary and will reverse itself. Can you get a second opinion and/or a referral to the right specialist to help? I have a golfer friend who had surgery to repair wrist tendinitis that was 100% successful so that might be an option if this doesn't self-resolve,

I think that getting opinions that don't change anything is a great outcome. That suggests that there was implicit unanimity, or near unanimity, among doctors you consulted with. That would give me a lot of confidence and lessen the chance of later regret or second-guessing.

@pattyayn59 what was your Oncotype score?

Hello all! I’m 63 was diagnosed in august 21. Dcis stage zero grade2 and no lymph nodes. No history of breast cancer in family.
Tried anastrozole and couldn’t tolerate it ! After two months went off it! My mayo oncologist put me on tamoxifen 10 mg to start. Anyone - please share your experience with me on tamoxifen or other meds. It’s all so overwhelming. I did have some slight spotting and cramping in the fist few weeks so far on tamoxifen. But dr said after ultrasound that I was ok. God bless all of you - survivors!!!!!

@toepeekun, you'll notice that I moved your post about deciding whether or not to take an aromotase inhibitor or not to this existing discussion:
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

I did this so you can easily connect with others who have through this decision process. Keep in mind that everyone is different. What may cause side effects in one person, may not in another. You're right to consider carefully with your oncologist your own health history, age, your diagnosis, goals of treatment, and your specific risk of recurrence.

Have you discussed the percentage risk of recurrence specific to you with your oncologist?

I kept googling different sites. There are some in India that have great results. The drugs, All AIs, crippled me. I stopped after 6 months and I am still having problems. They caused me severe arthritis and weight gain, dizziness, severe mood swings, it was horrible. I was in bed the whole time, not able to walk. It took me 4 months to get those horrible side effects out of my body. I am 3 years cancer free, doing my 6 month checkups, and I have never felt better. I have lost 56 pounds and I walk 2 miles every day. I did it all by going whole food, plant based, no oils, and I am living my BEST life. I am 69 this year, and looking forward to many more good years. I dont have the sites anymore, but I remember the numbers being in the low 1 to 2 percents.....

I made it through the aches and pains for 4.8 years and then got slammed. I don’t know why. I am your age and had a cortisone shot near my thumb/wrist since the hand doctor said it was tendinitis not carpal tunnel. It worked but now I have Achilles tendinitis (same side) and can barely walk. Not sure what I am going to do this time. I think the AI dried up everything! But I am glad I made it most of the way through. Yoga is helping a lot. I was lucky to try the hand doctor because my husband has been his patient or I never would have thought of that. Other people have tried different AI’s. My son’s mother in law switched to tamoxifen which is not without risk, so I would explore the options. Try not to give up.

Also, grade is subjective, according to my doc. I had results that read grade 2 at two hospitals, and grade 3 at another two.

There are other factors that make things complicated. My cancer is mixed ductal and lobular: the ductal part is HER2+. The HER2+ result from the biopsy probably meant the biopsy mainly got DCIS and ductal cells, but the surgical pathology got mixed ductal and lobular, so it was equivocal overall for HER2, until more testing showed a negative result because more cells were tested.

Lobular always has a score of 3 for tubular in the calculation of grade, which presumably increases my grade, since my tumor was half lobular.

The highish ki67% could be from cells healing after the biopsy (proliferation), and one doc agreed. I also wonder if the LVI is from the biopsy, meaning it could appear some cancer cells ended up in the lymph vessels (they were not in blood vessels) though doc said no recently when I asked.

I mainly questioned these things because of the disparate results but also to explain my low Oncotype. It would be nice to trust every result as an absolute truth and I don't mean to upset anyone!

In the end, the treatment recommendations did not change after the first post-mastectomy pathology. The first HER2+ result was from the biopsy so that mistake would not have persisted. While the three post mastectomy lab results were a little different, my treatment remained "just" letrozole, based on the Oncotype which we also have to trust! Getting opinions and pursuing extra tests just let me feel more comfortable but didn't actually change anything.

I can only say that the breast cancer 'industry' uses 50% as the presumed reduction of risk of recurrence of ER+ breast cancer if one takes either anti-hormone therapy for five years. The two oncologists whom I consulted say that the number is closer to 42-45%.

Your cancer issue might have very different statistics if a less common cancer. I calculated my decision about aromatase inhibitors by having the OncotypeDX test done with the tumor tissue. The test yielded a 3% risk of loco-regional 'recurrence at 9 years' if I took aromatase inhibitors. Arithmetical, that means my theoretical risk is approximately 5% if I didn't take them. [Chemo was ruled out as having x<1% risk/reward benefit and therefore not recommended.]

If you can get the genetic testing done, the data might help develop a plan of action. I saw my oncologist (first of two and still the main one) two weeks after surgery and he recommended the OncotypeDX at that time so it's possible to have a time lag between post-surgical biopsy and tissue submission to Oncotype.

I decided against the aromatase inhibitors because of the only-slight risk in reduction but everyone has a personal risk/reward level of comfort to consider. A high risk result would have made a different decision tree to ponder. Gene-testing for breast cancer issues is mentioned several times on other Mayo Connect threads so you can read about choices out there.