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Decide against aromatase inhibitors?
Breast Cancer | Last Active: Aug 27 10:53am | Replies (124)Comment receiving replies
my wife had a similar profile, grade 1/ She took letrozole for one year and was miserable. Part of that bone pain came from her acute menopause, having been in the minority and having taken Premarin for 30 years since hysterectomy/oophorectomy. Her pain was severe bone pain. Her medical oncologist at a major university was next to worthless, saying most people didn't have such severe symptoms. But the literature review says 25-35% of women stop the aromatase inhibitors. Just reading this forum it appears that women are getting 'stock' answers instead of some of the individualized care they should be receiving. I've learned more about women's struggles through this site than anyplace else. Osteopenia is a major issue. In my review of the literature, if the risk factors are there biphosphonate therapy started concurrently with the aromatic inhibitors can prevent a lot of the bone loss. My wife's severe osteopenia was treated sloppily. Her risk of compression fractures is higher than her risk of recurrence. Obviously everyone has to make their own decisions but we have been very unhappy with advice received. As a retired surgeon I have been able to help her more than others may be able but I have felt ignored, condescended to and gaslighted. We are getting a second opinion or even just changing our care to Dana Farber next week. Age is an issue, my wife 75 when diagnosed, 77 now. Decisions obviously different for age and tumor type.
Replies to "my wife had a similar profile, grade 1/ She took letrozole for one year and was..."
I've already had a compression fracture because of osteopenia. Then came the breast cancer with the lumpectomy and radiation. But you hit on something no one mentions: Age. I'm 86 and all the doctors treat me differently than they did 20-30 years ago. My friends say the same thing. We're herded in and out of doctor's offices and labs like cattle. I feel they look at me as a nuisance and they think she's going to die soon anyway. The trouble is all the doctors who might look at age differently are retired themselves. I would like these younger doctors (meaning 60 and under) to think I'm just as important and care just as much and want to feel better as any younger person. For instance my last overall health record put me as barely ambulatory. They didn't have a clue. I swim 4 days a week for 45 minutes and walk on the treadmill 30 to 35 minutes. I wonder if AI wrote the report instead of the nurse and doctor. Sarcasm intended, but therein lies truth.
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!
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Your wife is very blessed to have a doctor husband, knowledgeable but also personally care about her. Lots of medical professionals have no personal care for the person. It's just their job and the person is just another patient. I'm a retired nurse so I know what I'm talking about!