PCOS
Hi, I have polycystic ovarian syndrome (PCOS). I have not been officially diagnosed but I most likely have HR+ breast cancer. I also have a serious history of depression. Tamoxifen interacts with my medications. I understand that ovarian function needs to be suppressed in pre-menopausal women which is why aromatase inhibitors are not recommended as first line therapy. But if my ovarian are dysfunctional anyway, would I need ovarian suppression? I will ask my dr. Unfortunately, not very many are familiar with PCOS. I would love to hear from anyone else’s e
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Hi snowcat0605, and sorry you find yourself here. This is a really good question, and we do hope you find a doctor (or team of doctors) who can help you navigate these different variables. When do you find out the results of if/what type of breast cancer you may have? Going to a comprehensive cancer center for an opinion would be recommended, to figure out the best treatment course for your situation. We're here for you, and hopefully some others chime in.
Warmly
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I think one of the issues would be that dysfunctional is not the same as suppression. One of the reason that AI are not the first choice for premenopausal women is that they don't stop whatever estrogen the ovaries are producing. With PCOS the number of follicles each month is more than average not less so estrogen is for most women still at a normal level (and yes I had to look that up).
With all that being said the role of your MO in the process is to help with the medication side of things. So hopefully he or she can explore other choices or combinations of meds (there are other medications used for ovarian suppression such as Lupron in other medical situations for example whether that and AI is a possible solution for you I don't know but certainly a good MO would explore options with you)
edited to add there is a topic that might be of help not sure how active it is but it fit’s premenopausal women on ovarian suppressiohttps://community.breastcancer.org/forum/78/topics/870169?page=94#post_5770619
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I just received it today. It’s mixed ductal & lobular. It’s a moderate grade. I’m meeting with my dr. On Friday to review. Thank you for a
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I know this comment is a few years later, but I also have PCOS, late-diagnosed ADHD, with long history of depression and anxiety. I was Dx 08/2023 and started Tamoxifen 04/2024. IDC, triple positive. I had to stop taking buproprion (Wellbutrin), which was a go-to drug that typically provides some relief to my symptoms. It has been devastating. I switched to venlafaxine, after getting Kaiser Permanente insurance with a job change (their formulary did not include the desvenlafaxine that was my initial change after starting Tamoxifen). I am not a fan of venlafaxine, though there is research supporting its effectiveness with decreasing some menopause symptoms. I took it years ago and hated it. I'm upset about the restrictions on tamoxifen and am considering stopping it because of all of the additional side effects. My fatigue and mental health is debilitating. I am currently finishing a 2 week abstinence from Tamoxifen to see how my symptoms change. I have continued to take the same PCOS drugs (500 mg twice daily metformin and 100 mg once daily spironolactone) throughout my cancer diagnosis. I've taken these drugs since 2007 or 2008. I'm wondering why I haven't had a dosage increase to support my metabolism through this process. I've gained about 25 lbs since starting Tamoxifen. I incorporate movement every day as much as I can after working all day. I spend much of the weekend recovering.
I agree that many providers do not have experience with BC patients with a history of PCOS, long-term hormonal birth control usage and related Dx (endometriosis, depression, anxiety, etc.). I have not gotten any advice about how to manage these pre-existing hormonal issues while I manage the effects of oral anti-cancer hormone suppression drugs.
I do have a phone apptmt with the oncology NP tomorrow as follow-up on the Tamoxifen trial and hormone levels test results. Dr. Google told me that the hormone levels read "post-menopausal." I will include all of the above concerns in my discussion with the NP, but I remain discouraged.
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@apocalypstick - Welcome to Breastcancer.org. We're glad you found us and decided to reach out to our members. Hope you find answers and support from others here soon.
It sounds like you're doing everything you can to manage it, which is great. Hopefully, your call with the oncology NP will help clear some things up. If you haven’t already, check out some info on managing side effects of tamoxifen on our site:
You may find something helpful there. Wishing you all the best as you figure it out! And please, let us know how it goes today.
The Mods
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