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Who is managing your bone health, oncologist or endocrinologist?
I’m a breast cancer patient on Letrozole for 5.5 years so far and 10 year goal. 2 years ago I had osteopenia and my oncologist wanted to put me on Zometa, but said ask your endocrinologist. My endocrinologist said no, he would do Prolia first and only when I have osteoporosis because Medicare won’t cover for osteopenia. So I haven’t been on anything. I’m reading that Medicare will cover those drugs for AI drug induced osteopenia (true?) and that oncologists choose Zometa for breast cancer as protection from cancer spreading to bones (true?). I feel like the two specialists need to talk so I get the appropriate treatment. Oncologist just told me to have my endocrinologist order DEXA that is due and manage my bone health. Endocrinologist says he can order but it won’t be covered since he has no history on that for me. I feel like a ping pong ball so I’m wondering who is managing bone health for other breast cancer/AI patients. Thanks for any input.
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@celestebradham how very frustrating! My oncologist has taken care of all things having anything to do with the AI and all that comes with it! It’s unfortunate that yours is trying to push it onto someone else for some reason. Advocate for yourself!! If this oncologist won’t listen and take action, you may need to find another one who will. Best of luck yo you and prayers!
@mistymar Thank you very much--this is very helpful and I appreciate it! I am also thinking a Calcium with Citrate is the way to go-- calcium supplements seem particularly complicated. :). Have also started a strength training program, which I am really liking. My best to you! Patty
@californiazebra
I did that too..........about 15 years ago...............trouble was that I took calcium carbonate and it just doesn't dissolve......I have had no problem with calcium citrate...............
The kidney stone was sooo sooo horrible. I do take vitamin d and potassium and magnesium........"gummy form" since this is less crystaline.........and better dissolved.
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1 Reaction@marceen
Good info. Thank you! I honestly prayed to die during that kidney stone it was so unbearable and I can’t take any pain meds. I do take vitamin D gummy and just started magnesium glycinate powder so I can control the dose.
@californiazebra
The rest of the story is that I went to a large hospital in oregon...........well, the urologist zipped me in and ho hum, we just have an opening in the operating room tomorrow......I am a second option person. What got me was that he said he might have to replace a stent. "Then" the stent might have to stay in for the rest of my life.......So, I got got a second opinion at OHSU (a teaching hospital) . I suggested myself a muscle relaxant - well - a muscle relaxant is standard for me with a stone (well the side muscles in the urethia are "sorta" the same) (think chevrolet vs ford- ha) Second opinion doc agreed with my suggestion and yes, 12 years later, I am still ok. Docs don't like suggestions..... but can you imagine a plastic stent up there???? The secondary opinion doc said "we never do a long term stent"...........Calcium carbonate does not dissolve ....period.
It pluggs up..............
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1 Reaction@californiazeThe story goes on...........when the doc try pushing bone density meds.......
I have a stack of research studies with the side effects.........nope. Prolia was one thousand dollars a month.
Yes, strength is good. I did Osteostrong for a year, but the cartilage in my knee gave out....the body knows best..........vitamin D is needed too..... Osteostrong has a weight resistance program.
The other story is that my parathyroid was acting up......the docs delayed 3 years and my bone density was going down every year. Parathyroids are the size of a pea and they control the breakdown and build up of bone. It ended up I had only one bad one and the Norman Clinic took it out - I am stable now. This is not a job for a "general surgeon" because it is so delicate and they just want to take out everything..........another story. Norman Clinic was totally great and my supplement insurance paid for almost all.
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1 Reaction@marceen
You’ve done a great job advocating for yourself. It pays to do research and second opinions are very valuable especially when you’re questioning what the first doctor is saying. Glad you’re doing well.
I looked up vivactin that I took 25 years ago and it is calcium carbonate. I will definitely look into calcium citrate. Thanks for the info! 🥰