How important is taking hormone blockers after surgery for IDC?

Posted by cadunkin @cadunkin, Sep 5, 2022

I’m 71 & diagnosed with IDC. The tumor was very small, clean margins & no lymph node involvement. After much research & discussion with my oncologist I am leaning toward 3 weeks of radiation & no hormone blocking drugs. I understand that there is more risk of cancer returning, but the difference in that risk doesn’t seem worth the side effects of the drugs. It’s important to me to remain active so the bone loss, joint pain & fatigue would greatly affect my quality of life. I would greatly appreciate all discussion on others that have made this decision & how they are doing. All of it is scary! Thanks much everyone.

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callalloo | @callalloo | Sep 6, 2022

I had a lumpectomy in October, 2021. A Stage 1A tumor, under 1 cm in size, with clean margins and a clean sentinel node biopsy. Thankfully, my oncologist suggested that we have genomic testing done as well. (And, just as thankfully, insurance covered the high cost.)

The OncotypeDX showed a very low 'risk of recurrence within 9 years' and, after consulting with two oncologists, I declined aromatase inhibitors, after two tries, due to side effects of joint pain and concern about elevated cholesterol and bone health. I might have discontinued the drugs anyway but the genomic testing helped provide some answers. (For example, none of the known risk-increasing mutations were found in the tumor sample provided from my lumpectomy.)

Because I have osteopenia, I knew that I would end up on both an aromatase inhibitor and some osteoporosis drug, because taking the former would necessitate taking the latter as well. And then have side effects from both to deal with.

If you can take tamoxifen, it does not accelerate bone density loss and would be a choice worth considering further?

For whatever it's worth, I have two friends, one in her 60s and the other in her 70s, who also declined
the drugs after early-stage lumpectomies. It's been 4 and 6 years, respectively, since their surgeries and neither has had a cancer recurrence. One of them also based her decision on a very low risk of recurrence score on an OncotypeDX test. I think older women put heavier emphasis on present day quality of life over drug side effects for some possible future payoff. Or maybe the covid pandemic has fostered a kind of renewed sense of carpe diem as my oncologist suggested once.

Colleen Young, Connect Director | @colleenyoung | Sep 5, 2022

@cadunkin, this is a question that many members have asked in the group. Here are a few discussions for reference.

- Any early (less than 5yrs) local recurrence of early stage IDC? https://connect.mayoclinic.org/discussion/any-early-less-than-5yrs-local-recurrence-of-early-stage-idc/
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/
- Oncotype DX Test: What does it all mean? https://connect.mayoclinic.org/discussion/oncotype-test/

Whether to take hormone blocking treatment or not is a very personal decision informed by medical expertise. It sounds like you and your oncologist have arrived at a decision that is right for you, taking into consideration your age, lifestyle, diagnosis, tumor characteristics and treatments. Are you questioning your decision?

aej1954 | @aej1954 | Sep 5, 2022

I am 67 and also had a small tumor. I had a lumpectomy followed by radiation , nothing in my lymph nodes. I have since been on Exemestane, Anestrozole and am currently on Letrozone. The side affects for me were all bad so I may try Tamoxifen next but am not very hopeful. The bone pain is better on the Letrozone but I am still very tired, have hot flashes and headaches. My dry eye condition is also much worse.I have considered not taking them at all but am scared not to. The ones that have no side affects are very fortunate. It’s depressing because I recently retired and don’t feel like doing much. Everyone is different. Good luck to you!!