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Decide against aromatase inhibitors?
Breast Cancer | Last Active: Aug 27 10:53am | Replies (124)Comment receiving replies
I’m tearing up as I’m reading this. Thank you for posting.
I have severe bone pain. The gaslighting, the apathy…. All of it is WILD! It makes for a very lonely journey.
I’ve been using chatGPT to try to understand the mechanism behind the pain as my Oncologist is NOT helpful. Maybe it’s the acute menopause with the osteopenia exacerbating the pain. Your wife and I have that in common. Interesting to consider.
My pain is deep in my thighs and started with my first chemo treatment. It feels like the back end of a Charlie horse that doesn’t go away. It radiates up into my hips.
I’ve done a Nuc Med bone scan to check for metastasis. I’ve done Dexa bone density scan as well.
I’m SO thankful that the first scan did not show metastasis. My Dexa did show early onset osteopenia. I’m 43. The oncologist told me not to worry about it. Lol
I’m in the midst of weaning myself off of endocrine therapy post mastectomy, chemo, reconstruction. I was taking Letrozole and also a Zoladex shot.
Women are TOUGH!!!! If half of us are forgoing the “best treatment” because of side effects something is VERY WRONG!
Replies to "I’m tearing up as I’m reading this. Thank you for posting. I have severe bone pain...."
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Thanks for your note. I'm sorry to hear you are hurting. My wife was told that her pain was 'unusual'. The oncologists, in our experience, may know how to cure a cancer but they sure are limited in their understanding of pain and that you are actually a human being. We were told- Oh you're so unusual. Now we have a club of two, but I guess it will continue to grow.
I have been told by three physicians that osteoporosis doesn't hurt. The is mostly true. But osteoclastic activity, which is the breakdown of bone caused by acute menopause and some of the anticancer agents does. That's in the literature. As a physician, I can read the medical literature. But nevertheless you might find 'googling' various words that you can access to articles that you might be able to understand, but at a minimum accessing sites written for the lay person.
The only advice I can give is that if you have breast cancer at 43, don't ignore your oncologists advice on long term anticancer agents to lower the risk of recurrence. Get another opinion if you're not happy.
It is critical to monitor bone health throughout this process. It's critical and your onco-endocrinologist should be able to help guide this. You have a long life ahead of you so it is so critical to make the right choices. Sorry you had to join the pain club, hope it abates.