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

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!!!!!

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 would also like to see those studies. I was on letrezole for only 4 months after a bilateral mastectomy for invasive lobular carcinoma, er+, pr+, Her2- , grade II, stage 1A, before I developed very painful carpal tunnel symptoms with trigger thumbs on both hands and body aches everywhere, that kept me from sleeping. And brain fog with some depression thrown in. My oncologist suggested a break. I don't know for how long. I have been off the drug for two weeks and the body aches are better. Depression and brain fog is better, but the carpal tunnel and trigger thumbs have not resolved. I have tried physical therapy and ibuprophen. It's very difficult to think of going back on AI's. I am 69.

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?

They told me oncotype doesn’t refer to me since no chemotherapy recommended.

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,

Yes, if you find the studies please message me. Thank you. I'm pretty sure this is carpal tunnel. I've been searching physical therapy on the internet. The PT I've been doing to recover range of motion after bilateral mastectomy is working very well. I've asked for a referral for hand specialist. Just waiting to hear. Also having to deal with some sort of lung infection that doesn't present me with any worrisome symptoms, but was incidentally found on a CT scan. I just don't know where to put my attention. I feel like, after never seeing a traditional doctor most of my adult life, I'm suddenly caught up in an overwhelming system that I'm barely unprepared to manage!

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.