AIs after hysterectomy?

Posted by maximummy @maximummy, 6 days ago

Hello to the Group and thank you for all the amazing information I am finding.
I am actually awaiting my diagnosis but wanted to ask if AIs are still necessary, or perhaps a reduced dosage if you have no ovaries? I have read about how progesterone helps to produce oestrogen.
I am BRCA2 positive, 70 years old.
Thank you and only the best of good luck to everybody.

I

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Profile picture for kissmekate48 @kissmekate48

@myoga, seconding this. I had my ovaries/tubes removed after an ATM diagnosis (cervix, uterus was left because if something goes wrong there, it's easier to notice). I asked a few times about any hormonal effect I might notice and my gyn-oncologist reassured me that my post-menopausal little almonds were not doing anything of use. 🙂 And it's true, I've noticed nothing. She also said that if she could, she'd encourage all post-menopausal women to do the same to avoid ovarian cancer. I count one less thing to worry about as a definite up-side to having genetic testing!

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I have my bilateral salpingo oophorectomy (ovaries and tubes removed) two years ago and didn’t feel much different either. I hope you’re doing fine.
I met a mother and daughter. Mother had breast cancer and tested positive for brca after. She’s doing find and in remission for quite a few years. The daughter tested negative but she had ovarian cancer later and she’s not doing so well due to late stage. So you’re right, it’s a definite up-side to genetic testing and almost a blessing when you can take measure to prevent cancer. Wish you all the best.

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Profile picture for vegada @vegada

@dmr4ever I have not taken anything yet for Osteopenia. Managing bone issues and actually finding a solution feels almost impossible to me based on the research I have done. Today, I am focused on building muscle, ensuring I take sufficient calcium, vitamin D, collagen and protein. I don’t think it will be enough to reverse my osteopenia and I think the real answer may be to take HRT which oncologists will tell us we can’t because of our prior cancer. It's a quagmire and I am not sure what medicine, if any, that I will take in the future.

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@vegada

I did HRT and actually suspect that it contributed to my cancer. My doctor at the time did a breast cancer risk assessment and determined my risk was low.

I take Vitamin K2, Vitamin D and calcium supplements but I haven’t done weight training for a few years. I have asthma and have used oral steroids off and on for decades. There are so many contributing factors, pros and cons that it’s hard to know what’s best.

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Profile picture for dmr4ever @dmr4ever

@vegada

I did HRT and actually suspect that it contributed to my cancer. My doctor at the time did a breast cancer risk assessment and determined my risk was low.

I take Vitamin K2, Vitamin D and calcium supplements but I haven’t done weight training for a few years. I have asthma and have used oral steroids off and on for decades. There are so many contributing factors, pros and cons that it’s hard to know what’s best.

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@dmr4ever it is very hard to know what to do. I am totally right there with you. I do weight lifting with a physical therapist who is trained in osteopenia/osteoporosis so that may be something for you to consider. I took HRT years ago before I was diagnosed with breast cancer. So it could have easily contributed to mine too, but I will never know nor do the doctors actually know what exactly causes breast cancers. They have some guesses and theories based on what they see clinically, but if we all knew exactly what would prevent breast cancer, boy would that ever be a tremendous medical win.

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Profile picture for vegada @vegada

@dmr4ever I have not taken anything yet for Osteopenia. Managing bone issues and actually finding a solution feels almost impossible to me based on the research I have done. Today, I am focused on building muscle, ensuring I take sufficient calcium, vitamin D, collagen and protein. I don’t think it will be enough to reverse my osteopenia and I think the real answer may be to take HRT which oncologists will tell us we can’t because of our prior cancer. It's a quagmire and I am not sure what medicine, if any, that I will take in the future.

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@vegada you can’t absorb calcium without estrogen. I am on a low dose estrogen for my spine since i was showing bone weakness at 35 due to a hysterectomy at 34 . Spine doc said “I want you on estrogen the rest of your life”

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Profile picture for vegada @vegada

@dmr4ever I have not taken anything yet for Osteopenia. Managing bone issues and actually finding a solution feels almost impossible to me based on the research I have done. Today, I am focused on building muscle, ensuring I take sufficient calcium, vitamin D, collagen and protein. I don’t think it will be enough to reverse my osteopenia and I think the real answer may be to take HRT which oncologists will tell us we can’t because of our prior cancer. It's a quagmire and I am not sure what medicine, if any, that I will take in the future.

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@vegada So I am post double mastectomy with immediate reconstruction 6/26/26 and have a very low risk for recurrence (5% with taking endocrine therapies and around maybe 8% without taking anything). I was stage 1 grade 1 invasive ductal carcinoma and with oncotype DX of just 13. I am having a very hard time agreeing to taking the medications due to all the side effects and my limited benefit... plus I already have osteopenia in my left hip I just found out.... I have the option of taking Tamoxifen as well but it does not have that risk but some other risks.... So many decisions but the medical oncologist is not pushing me to take due to my numbers... it does seem they downplay the risk of bone thinning but it seems a lot of women are affected with their bone health. I will know more on my decision when I get back genetic testing and also the Signatera lab as well. Wishing you and all reading the very best!

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Profile picture for janiern2 @janiern2

@vegada So I am post double mastectomy with immediate reconstruction 6/26/26 and have a very low risk for recurrence (5% with taking endocrine therapies and around maybe 8% without taking anything). I was stage 1 grade 1 invasive ductal carcinoma and with oncotype DX of just 13. I am having a very hard time agreeing to taking the medications due to all the side effects and my limited benefit... plus I already have osteopenia in my left hip I just found out.... I have the option of taking Tamoxifen as well but it does not have that risk but some other risks.... So many decisions but the medical oncologist is not pushing me to take due to my numbers... it does seem they downplay the risk of bone thinning but it seems a lot of women are affected with their bone health. I will know more on my decision when I get back genetic testing and also the Signatera lab as well. Wishing you and all reading the very best!

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@janiern2 I hear you on all the difficult decisions we have to make for cancer treatment. My cancer was very similar to yours except my Oncotype was a 29, much higher than my doctors and I expected. I decided to also do the Mammaprint since the Oncotype was so unexpected and the Mammaprint came back with a low risk of recurrence. Until I took the Mammaprint my doctor said I should have chemo which I pushed back on because the Oncotype result was the outlier compared to all of my other clinical factors. After much debate and a really stressful time, and consulting the tumor board and two other external doctors for a second opinion(total of 10 doctors) they all agreed no chemo. It was a reversal of a recommendation that would not have occurred if I didn’t push for the Mammaprint. So I understand the real stress these difficult discussions place on all patients. How did you doctor determine your risk of recurrence? Did they use the RSCLIN model to determine your risk or was it determined by the score on the Oncotype? In terms of bone health, I totally agree with you that some oncologists don’t really discuss in detail the impacts on bone health and I really feel that is a big mistake. Bone health is so so critical and it is something I didn't pay much attention to all of my life. I was just blessed with good bones until my breast cancer diagnosis and taking the Anastrozole. My risk of recurrence according to my Oncotype with taking Anastrozole was much higher and two years post my cancer treatment they came out with the RSCLIN model which takes into consideration your age and other clinical factors that the Oncotype does not. The RSCLIN model showed that 95% of people with my age, tumor size and grade, are not expected to have a recurrence, and 5% of the people would have a recurrence and 3% of the people with a recurrence would benefit from chemo. I am just sharing all of this because it is just another example of difficult potentially life altering decisions we all have to make. You are very wise to think about your bone health and get comfortable with the direction you want to go.

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Profile picture for conchgirl @conchgirl

@vegada you can’t absorb calcium without estrogen. I am on a low dose estrogen for my spine since i was showing bone weakness at 35 due to a hysterectomy at 34 . Spine doc said “I want you on estrogen the rest of your life”

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@conchgirl I have done some research on this and there are conflicting opinions on it. I think for maximum benefit of collagen, you are likely correct that having some estrogen is ideal but the research I have seen still shows some benefit, albeit not likely as much benefit with a lack of sufficient estrogen. But I will take any bit of benefit it does provide.

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