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Double mastectomy /Estrogen positive DCIS and increased arthritic pain

Posted by snowdown @snowdown, Jun 25, 2023

April 17 I had the double mastectomy and same day silicone replacements after a lumpectomy with three unclear margins (total area of DCIS was approximately 9x7x2 cm). Luckily I am all clear and am not on any estrogen blocking therapy due to having had the double mastectomy. However, I am experiencing an increased amount of pain in joints having Diagnosed osteoarthritis. Back, hips and thumb joint. I am a dental hygienist and near retirement (thumbs). Just wondering if anyone or if taking out all of my estrogen tissue is related. Pain really seems to have intensified since mastectomies. Good thing is my healing chest now feels better than my hands!

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cathyn | @cathyn | Jul 3, 2023
In reply to @californiazebra "@snowdown I had a double mastectomy in 2013, stage 1, BRCA2+ and even had my ovaries..." + (show)
@californiazebra

@snowdown I had a double mastectomy in 2013, stage 1, BRCA2+ and even had my ovaries removed at the same time so instant menopause. I was advised I didn't need to take an estrogen blocker. My breast cancer returned 7 years later. My new oncologist and surgeon told me I received bad advice about skipping the estrogen blocker. They said it would have reduced my chances of recurrence by up to 50% (estimates vary). Your body still has some estrogen even after menopause. Consider a second opinion about the estrogen blocker. Blessings, Zebra

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The difference in your case is that you had your ovaries removed. They are the main source of estrogen production. You still have very small amounts and estrogen is stored in fat tissue, but with double mastectomy and ovaries removed it would not seem that you need an estrogen blocker afterwards. There are significant issues with them, not just uncomfortable side effects. It isn’t black and white, but I don’t think you got bad advice from your first doc.

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windyshores | @windyshores | Jul 3, 2023
In reply to @cathyn "The difference in your case is that you had your ovaries removed. They are the main..." + (show)
@cathyn

The difference in your case is that you had your ovaries removed. They are the main source of estrogen production. You still have very small amounts and estrogen is stored in fat tissue, but with double mastectomy and ovaries removed it would not seem that you need an estrogen blocker afterwards. There are significant issues with them, not just uncomfortable side effects. It isn’t black and white, but I don’t think you got bad advice from your first doc.

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@cathyn @snowdon @californiazebra Indulge me if you know this, but aromatase inhibitors address estrogen made by the adrenal glands, not the ovaries or in fat.

If ovaries were removed, I believe that aromatase inhibitors can be used instead of Tamoxifen.

Many of us do not have significant issues with these meds but bones need to be monitored.

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Zebra | @californiazebra | Jul 3, 2023
In reply to @windyshores "@cathyn @snowdon @californiazebra Indulge me if you know this, but aromatase inhibitors address estrogen made by..." + (show)
@windyshores

@cathyn @snowdon @californiazebra Indulge me if you know this, but aromatase inhibitors address estrogen made by the adrenal glands, not the ovaries or in fat.

If ovaries were removed, I believe that aromatase inhibitors can be used instead of Tamoxifen.

Many of us do not have significant issues with these meds but bones need to be monitored.

Jump to this post

Hi @windyshores I agree about post-menopausal (ovaries out is surgical menopause) estrogen and have now been taking an aromatase inhibitor, Letrozole, for 2.5 years due to recurrence. And since my cancer did come back, I'm thinking we could have done better with treatment the first time around. I can only move forward now and hope as we all share our stories here, we help those in line behind us avoid the same pitfalls.

As we're talking about estrogen being stored in fat, I suddenly thought, hmmm maybe liposuction should be part of our treatment plan. Just kidding about that part. 😉

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