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Oophrectomy without AI Inhibitors

Hi, I'm Bonnie R K.

Has anyone with hormone receptor positive cancer opted to remove their ovaries but skip AI’s? I understand AI’s further lower risk. I understand that the body still makes some estrogen even without the ovaries. I’m trying to understand from anyone who opted to do this what their discussion was like with their oncologist and what drove your decision. I am stage 1a invasive ductile, had a 1.7cm HR+ HER2- tumor removed in Jan. No genetic markers, clear margins, clear lymphs. Am planning to do radiation therapy but no chemo. All the research I can find only indicates the difference in risk between AI’s or no AI’s. Looking for info on whether or not removing ovaries alone offers any level of decreased risk. I am 46 and premenopausal.

  • Post #1
  • Sun Mar 17, 2019
Hi, I'm Mother of 4

Hi – I was stage 1a invasive ductile, had a 3.0 cm HR+ HER2- tumor removed in one breast and had DCIS in the other. 51 years old, pre-menopause, ONCOtype score of 13. I discussed having my ovaries removed with my oncologist as well. He indicated that it could result in a very small reducton in recurrence to do this but he could not say that it would be more than 1-2% if at all. In the end, we decided just to start tamoxifen. I have been taking tamoxifen for 60 days and no issues except hot flashes.

  • Post #2
  • Sun Apr 14, 2019
Hi, I'm Kristi Q.

Re: Post #1
I’m very much in the same boat as you: 49yo IDC, hormone +, HER2-, stage 1A after Oncotype score of 17, node negative, clear margins after SMX. No genetic issues known (though didn’t test) and premenopausal. Only difference is that I have an inherited blood clotting disorder that puts me at greater risk for clots (thus making Tamoxifen a risky option). Any reason they wouldn’t try Tamoxifen with you first?

Our bodies do produce estrogen by converting something in fat, so overweight women tend to have higher estrogen levels even without their ovaries. Hence the need to tackle it via the AI route.

Since I’m premenopausal, I’m doing ovarian suppression combined with anastrozole (AI) and so far so good. Only minor, and completely tolerable, side effects. I’ve been on this therapy for 2 months. Not doing oophorectomy out of the gate gives me time to “try on” AI and shake out any side effects. I’ve been pleasantly surprised thus far.

Head’s up though on insurance approval: medical ovarian suppression (e.g. Zolodex) w/ AI is typically only for node positive pts. So your MedOnc has to go to bat for you to obtain approval for this route. I got approved for 13 months so far.

I will follow this discussion. I don’t like having to do Zolodex/Anastrozole, but I have more peace of mind that we are treating any cells that may’ve quietly squeaked by. And with such doable side effects, the AI is totally worth it for me!

  • Post #3
  • Sun Apr 21, 2019
Hi, I'm Bonnie R K.

Thanks for the input – I really appreciate it. Since I first posted this I got a second opinion that said tamoxifen for 5yrs with ovarian suppression because research suggests that combo may work better. I’ll be honest. I don’t like the possibility of bone pain and bone weakness that can be caused by AI’s and I don’t like the idea of increased risk of uterine or bladder cancer that tamoxifen has been known to cause. And although I know that chemical ovary suppression is an option many choose because it’s reversible I just don’t like the idea of adding meds to my body if it’s not totally necessary. And it’s frustrating because no one can tell you “what’s necessary” I feel like no one really knows what the right options are and that the doctors just want to layer on every treatment option to cover every scenario just in case. But “just in case” that comes with lots of undesirable side effects gives me pause. No one, I’m sure, is going to say “xyz treatment is probably enough” but there comes a point when each person has to decide what level of risk they are comfortable and what level of side effects they are willing to tolerate and go with it. I’m one week into 21 radiation treatments and am still trying to decide what/if I want to do about hormone suppression.

  • Post #4
  • Sun Apr 21, 2019
Hi, I'm Kristi Q.

I totally hear you. I’m not happy about adding meds to this fight, but decided that I needed to cover my bases…once metastasized, its a much bigger fight! I finally decided I’d do anything I could (including alternative/complementary measures like diet and exercise) to fight any recurrence.

I also gave a lot of pause to AI’s and ovarian suppression, fearing the very side effects that are often spoken about on these and other forums. I try to remember that the lion share of those who post here are women who have had uncomfortable side effects. The patients who have tolerated their course well are likely not on these forums (… I know there are exceptions). In other words, we largely hear the not so great stories when there really are many good cases that aren’t posted. You may find, like me, that you tolerate the medications just fine with only minor complaints. Unfortunately you won’t know until you try.

Best of luck to you during your decision making. Wading through the options, I felt, was very hard. But you’ll know in your heart when you’ve found the best path forward for you.

  • Post #5
  • Mon Apr 22, 2019

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