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

Breast Cancer | Last Active: Sep 22 2:13pm | Replies (1230)

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Profile picture for wyowyld @wyowyld

I did extensive research, and talked to my oncologist about it at length and on several occasions. My ILC was 7mm stage 1A, no mode involvement and caught early. I had the genetic testing and fortunately do not have any genetic concerns, and cancer markers were very low. I had a lumpectomy and radiation. My risk of recurrence before radiation was less than 5% after 9 years. My oncologist told me that the AIs would decrease my overall risk of recurrence, after radiation, 1%. I have chosen to go for quality of life at this stage and am not going to take them for now, and hopefully ever. I am approaching 70 and figure the next 10 years will be the most active I've got. I understand my risk factors, and am willing to take a little more risk to maintain the quality of life I have. It's a tough decision, but I have complete peace around my decision, and know it is different for everyone. Good luck!

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Replies to "I did extensive research, and talked to my oncologist about it at length and on several..."

@wyowyld I have a similar risk level as you, although some differences in type cancer. I’m 70 and am thinking along the same lines, I want to maximize the next 10 years while I’m still *young* 🙂
My latest beliefs after reading current research is that the radiation should kill the cells it touches, but there may be wayward cells that will continue to grow. It often takes years for a cell to get to a clinically significant size, so I’m going to be extra vigilant at 5 years, and then about every three years after. The hope that it will be seen at an annual scan - but that 3 years may be when it’s grown just large enough to be viewable.

I did not take the option for AIs. I had 100% ER and 95% PR so I decided I’d try tamoxifen. For me, the AIs spelled trouble as I’d already had de Quervain’s tenosynovitis twice in my hand and plantar fasciitis in my foot mutiple times. As well as osteoporosis. I didn’t like the cut-off of estrogen in other organs that AI causes, but just like chemotherapy, if the risk is high enough the side effects might not be pleasant but its doable in order to control the cancer. The choice of taking an AI is definitely right for some of us.

Tamoxifen was a problem at 20 mg but I’m tolerating 5 mg pretty well, I think, I may even stay on beyond 5 years as I see other benefits that the estrogen-as-agonist is providing. But, because of all the scans and issues that have occurred since the cancer showed up there are some things that are now on my radar and I’d want to make sure these aren’t being made worse by tamoxifen. I regularly check new research to see if tamoxifen is driving the adrenal cysts, the mild white matter hypersensitivities in my brain, the large increase in cherry angiomas (which I don’t care how benign they say they are - it is still angiogenesis and something is pushing the growths - never a good thing).

Boy, I *talk* a lot. Sorry for the long read.