Need help thinking through AI with ovarian suppression
My MO would like me to start an AI and ovarian suppression/removal. I am 42. Onc score was 31 for IDC with lobular component. No nodes. I understand that I do have a risk of recurrence but I also value an active lifestyle. I had no question mentally regarding the mastectomy and chemo. I do not feel peaceful about the hormone therapy side effects. Any advise? Experience?
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Hi @smay1030 -
Please know that not everyone has bad side effects from AIs. I am now on Femara for a 2nd time and my only side effect is that it makes me tired after I take it, so I take it at night. With my 1st dx, I had an oophorectomy followed by Femara, so I did go through the menopause side effects, but I figured that would happen at some point anyway (I was 47). I was on Femara for 8 years. It kept me 'safe' for nearly 20 years before my 2nd dx.
If you are active and you stay active after starting the AI, that might be one of the best ways to avoid side effects. Also, know that if you do have issues, there are different AIs to try and some do better on one than another.
Why don't you try it and see how it goes? You can always change your mind if it does cause you problems.
Take care.
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Although I personally opted out of AIs, my oncotype in the IDC breast was 11 and oncotype in ILC breast with 6 and also I was 20 years older than you a time of diagnosis (62 vs. 42). Genetic testing was negative for me. The oncologist I'd been seeing provided my recurrence/mets risk percentage based upon that data and deterined that it was 3% with AIs vs. 6% without AIs and that definitely was a factor in my decision as well. Has your oncologist quantified your recurrence risk percentage so you can also take that into account?
If I had been 10 years or more younger and/or had high oncotype numbers and/or a higher recurrence risk without taking AIs then I'd definitely have tried harder with taking the AIs. As @mandy23 pointed out, many women do fine on AIs with minimal side effects and if one doesn't work you can always try a different one so given your age and high oncotype score, I really encourage you to consider trying an AI.
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I pleaded to have my ovaries removed after researching and on average it reduced risk by 30%. I did this @ 56y so decision was easy. This is not recommend by any ocols in Australia,so it cost me a bomb in private hospital but Keyhole surgery was a breeze...easy.
Tamoxifen was giving me hot flushes anyway
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I’m hoping the MO can give me more a little data on my recurrence rate.
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smay1030, you are young. Do you know why tamoxifen was not suggested?
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I was recommended OS/AI after my second diagnosis (not metastasis, new contralateral cancer). I was 44.
Keeping active is very healthy and even more important with these drugs because I get stiff much faster. I wasn't a huge athlete or anything, but I haven't noticed anything that I used to be able to do that I can't do any more. But I do need to actually stand up and move around when my watch tells me it's time to, because otherwise I will feel creaky when I do eventually get up.
For me the most debilitating thing was the hot flashes because they messed with my sleep, which affects everything else. I worked with my docs and a bunch of trial and error and finally found a routine that works well enough for me.
I was on shots for about a year, and then opted to have surgery.
If you start with shots and pills, you can give it a try for yourself and see what/how the symptoms are for you and whether they are manageable (with or without medical help).
My guess is that this was recommended to you because that is a somewhat high oncotype and lobular is known to be tricky, possibly more likely to come back and/or harder to catch early if it does come back.
I will say that after my first cancer, I started on tamoxifen and my side effects from the tamoxifen were more unbearable than from the OS/AI. My doc switched me to toremifene (a 'sister' SERM) which was much better on the side effect profile but it did not prevent a new cancer from growing on the other side.
Maybe it will help put your mind at ease if you do some research about older women athletes and workers. There are menopausal women who are in charge of freediving fishing for their whole communities, swimmers who cross from Cuba to Florida, and many many other menopausal women performing hard work and/or athletic pursuits every day.
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