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

@callalloo, did you have DCIS? Remind me.

@tygerrag2 it is impossible to comment without knowing your pathology results and/or Oncotype score.

I had an Oncotype of 8 and recurrence risk of 6% with meds. I and several of my friends had very little trouble with aromatase inhibitors.

As for bones, I already had osteoporosis before doing my 5 years on letrozole. Bone density went down the first year and stabilized the last 4, or, rather, returned to the normal post-menopausal rate of loss.

I wanted to go on Reclast during treatment but my doc did not want me to due to occasional afib. That risk has since been discounted.

I actually miss my AI. I felt safer while on it!

I decided to not take aromatase inhibitors. I did have a low 'risk of locoregional recurrence within 9 years" according to the OncotypeDX test my oncologist suggested and we had done. [5% if I take the drug, 3% if I don't IF the OncotypeDX is valid and the oncologists I consulted think it is.]

I'm older and have osteopenia, which I hoping to reverse or keep in check, and the effect of estrogen depletion on the body, cardio system and bones is a concern that got my attention. I was about to write 'only time will tell if I was right' but would be intrue. I'd have a 3% risk IF I took the meds anyway so, if I suffer a recurrence, there's no way to prove it wouldn't have happened if I had taken them. It's a very personal judgment call though.

@tygerrag2, I moved your question to this existing discussion:
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

Tyger, what criteria as well as tumor and personal factors are you considering to make your choice?

would like feedback from others that have decided to not take AI"s or tamoifen.

The article below citing New England Journal of Medicine article suggests that "aromatase-induced carpal tunnel syndrome" can reverse by going off the drug. As yours is. So maybe, if the Achillies tendon issue is related to the drug, it will ease up as well.

There's a family of antibiotics with a major side affect being damage to the Achilles tendon. If you've taken an antibiotic like Levaquin in the recent past, that could be the cause here. In any event, I hope your PCP can get you to the right specialist and onto treatment to ease this.
https://www.jwatch.org/na40241/2016/01/20/aromatase-inhibitors-and-carpal-tunnel-syndrome

Hi, Just wanted to agree wholeheartedly on your comment >>>> " 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 have had so much medical intervention in the 5 yrs of cancer/nocancer/MBC that it is MORE than all other 65 yrs combined . Also ,I chose to trust health foodies and diet based solutions , ie , add more fruit like grapes or oranges (or lessen the same if too much acid )at anytime in my diet . So, the idea of drugs drugs drugs and side effects galore has been more stress and confusion than the cancer really . Hang in there .

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!

Did you have an Oncotype? It seems people with DCIS may not be having that test-?

Maybe you could try the medication and decide based on what you experience. Many people don't have horrible side effects. Bones can be dealt with with meds if need be but if you don't have osteoporosis, there may be less risk overall.

It would still tell you recurrence risk and how important hormonal treatment would be, as well as how effective. I would request one. The Oncotype is done for DCIS even though chemo isn't suggested.

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