Who is managing your bone health, oncologist or endocrinologist?

@mistymar Thank you for this...a couple questions if I may -- are you still on an AI.....and how much calcium do you take? I try to get as much as possible calcium from food but it is probably not enough.... Thank you so much!

@mistymar Thank you for this...a couple questions if I may -- are you still on an AI.....and how much calcium do you take? I try to get as much as possible calcium from food but it is probably not enough.... Thank you so much!

This is such an important topic! Although I've felt good about my breast cancer treatment, there is little coordination between my oncology team and other relevant specialists which would include endocrinology and cardiology. My oncology team can see what these other specialists are saying on their shared medical portals, but get the feeling I'd need to prompt them doing so.

My oncologist recommended Zometa as part of my overall treatment plan. I was diagnosed with ER+ IDC, osteopenia and a relatively high FRAX score with a treatment plan to include the aromatase inhibitor letrozole. With a prior history of reflux, I was not a candidate for oral medications. My oncologist did not recommend Prolia, although I don't know her reason. Based on my own reading, however I would not have wanted to use Prolia.

I asked my oncologist if they had an endocrinologist working with them to whom I could be referred. It seemed obvious to me that if you're going to start a serious osteoporosis type medication, an endocrinologist well-versed in breast cancer complications should be part of the oncology team. But that is not the way it worked. If I wanted an endocrinologist consult, I would need to seek one on my own.

Furthermore, I wanted bone turnover markers prior to starting any treatment plan. Again, when I asked my oncologist about this, she said she knew nothing about it and referred me to my primary care doc who in turn said she knew nothing about it and referred me to "an endocrinologist" without giving any specific name.

I hunted around and found an endocrinologist outside of my health system who reluctantly agreed to order the bone turnover markers for me. Because of her reluctance and the fact she was outside of the health care system treating my breast cancer and other health issues, I kept looking for an endocrinologist in my system who would use bone turnover markers. I finally found someone.

I've mentioned the issue of repeating my Dexa scan now, which is one year since my last one. My endocrinologist and every other doctor I've consulted has told me Medicare only covers it every 2 years UNLESS you are being treated for a diagnosis of osteoporosis, which I am not as of now. I've made the argument that you need the Dexa scans, the FRAX scores and the bone turnover markers to know if the osteoporosis medications are working. My endocrinologist says she's tried making this argument on behalf of other patients before and failed but will try it again for me.

Truthfully, I feel as if I'm the one "managing" my bone health!

Do any of you give a verbal run down of what your specialists are reporting when you go to a doctor? I give a 1-2 sentence update of relevant info, the doctor(s) listen - but I’m not sure there isn’t a better way to handle this as it takes up minutes of the visit. With AI “assistive listening” I’m betting that my updates are more likely going to be included in the clinical notes, and considered when looking at the whole picture.

My oncologist tried to put me on Prolia as a preventative when I started letrozole. I said no. I spoke with my breast surgeon who agreed. I barely had osteoporosis in my hip. I saw a rheumatologist who agreed to let me lift weights, adjusted my calcium and VIT D intake and weight. My family DO doesn’t want me to start any drugs either. You can never stop taking those drugs once you start them so beware and do whatever you can to keep your bones strong through exercise - progressive weight lifting and diet. You don’t have osteoporosis and you may never get it.

@prarysky
Thanks for your reply. Great response. You captured our frustrations and the disconnects. Like you, I feel my oncologist should have a better way of dealing with the common side effects of breast cancer treatment and read up on them even if he ultimately refers me out. I need him to understand what these harsh meds do to us.

I also agree that they do not read the notes from other specialists. I’ve found many doctors don’t even keep up with their own notes and try to prescribed meds for me that I’m allergic to as noted in their files.

When you said you can’t take oral meds due to reflux, are you talking about for bone health? Which ones? I’ve been on a PPI for reflux for at least a dozen years.

All the meds for osteopenia and osteoporosis seem scary!

@pattynau
I’m afraid to take calcium supplements because I did that 25 years ago and ended up in the hospital passing a kidney stone 6 months later while on vacation. No fun!