Who is managing your bone health, oncologist or endocrinologist?

Because I chose to go off Exemestane my oncologist said that my Primary Care Physician will need to order Dexa scans and care. I have had osteopenia for 2 years- and have been taking calcium for bone health. Walking and some strength training - I’m 63.

The ping pong ball term is funny but sad- I felt like that too after treatment too.

Hi! @californiazebra:

I am so sorry to learn of your suffering "coverage" issues of medicare, for it seems unnecessary; sorry...

I am no expert, but I can only share my own experience during my journey of BC with medicare coverage as an example. When I first met my medical oncologist back in January, 2024, he prescribed one of "AI" medications for me because my pathology report from surgery showed highly ER+ (>95%), PR+, and Her2- cancerous cells; he also worked with the endocrinologist in the same cancer center and prescribed Zometa infusion every 6 months to prevent the spread of cancer to my bone. When he checked my previous medical record and found out that I already had osteopenia before the BC diagnosis, he then ordered DEXA scan to monitor my bone health. It is true that AI medications may worsen BC patients' osteopenia cases into osteoporosis, this is the reason that medicare allows ER+ BC patients to have yearly DEXA scan. In my personal case, Medicare covers Zometa infusion, DEXA, and all. I am saddened that you seem to be "caught in between" 2 specialists regarding Medicare coverage, for fighting BC is bad enough for any patients:( Are your oncologist and endocrinologist working in the same hospital by any chance? Surely they can work together to look out for your bone health. Perhaps you may look for a reliable cancer center with a good reputation to provide overall care for you on the journey ahead?

I am so sorry for such a lengthy note, Zebra, sincerely hope it helps somehow...

I see an endocrinologist locally and in a different medical system from my oncologist at the comprehensive cancer center. I was told by the oncologist that they treat cancer not the side effects from medications. If I have bone or menopause type issues my primary care doctor is the one who treats those. My oncologist does consider the report from my primary care doctor, and I did get a hormone therapy dose reduction based on that info.

I’m on a medicare advantage program that has paid for bisphosphonates (alendronate and Reclast/Zomata) for osteoporosis and now osteopenia.

It sounds to me like your endocrinologist is not using clinical decision making or going out of their way to get the data needed to provide better care. The endo must consider your DEXA scores, the AI med side effects, and your breast cancer history. They can’t ignore data from prior treatment. It seems like your FRAX* score along with taking an AI would put your bones at a risk level that Medicare considers as needing medication.
If your endocrinologist doesn’t know what a FRAX score is, its time to change doctors. My FRAX score was borderline, but breast cancer and family history were part of the clinical decision to treat.

Clinical considerations your doctor should consider: last bone scan score (usually DEXA, records can be transferred), family history of bone health and falls, FRAX score, current medication affecting bone health - medical research has documented the affect of AIs on bone, your age and risk of expected future bone loss, and last but not least the fact that you had breast cancer and research shows that bisphosphonates reduce the risk of cancer metastasis to the bone, that includes alendronate (inexpensive med), Reclast/Zomata infusions, and Prolia injections. Even with non invasive DCIS, like I had, a bisphosphonate lowers risk because no one knows whether I still might have a recurrence which has a 30% chance of being invasive, and is a risk for bone metastasis.

Its true that medical plans don’t like paying for the cost of infusions and the frequent Prolia injections. They often want to start with alendronate, but it is a well documented effective drug. Original Medicare does not cover outpatient prescription drugs; you need a standalone Part D plan or a Medicare Advantage Plan with drug coverage to pay for alendronate. From what I’ve read you could get generic alendronate without drug coverage and pay less than $8 a month using online CostPlus Drugs (Mark Cuban’s co.) or $11.50 using Amazon pharmacy or between $9-20 using the discounted service SingleCare or GoodRX.

Sorry this is so long, hope you can get the care you need!

*Anyone can calculate their own FRAX score using the free online tool, it is the exact same calculator your doctor uses.
https://www.fraxplus.org/calculation-tool

@lifetraveler
Thank you for your response. I think my endocrinologist just needs to know the Medicare coverage rules that are specific to breast cancer and why zometa may be preferred over Prolia for a BC patient. The bigger issue is disagreeing on the treatment. I really think they need to have a chat. My endocrinologist is great and treats me for other issues so he’s a keeper. My oncologist is local but part of UCLA and I need him to be in that system to coordinate with other UCLA providers for my neuroendocrine lung cancer since he provides the injections for that locally saving me monthly trips to Los Angeles. I just really need to know which provider can better manage my bone health given the BC. Not sure if my oncologist is passing the buck since his office would provide the Zometa infusions. I have so many specialists it drives me crazy when they each say x is not my area. The oncology and endocrinology offices are not far from each other. I’m going to send my oncologist a message to order DEXA and have a chat with endocrinologist if he is expected to handle my case. Yes, I wish I had one multidisciplinary team on my case but too many unrelated disorders for that. Thanks.

@triciaot
Thank you. That is helpful. My endocrinologist kind of got pulled into my case blindly without historical records and responded to the treatment question simply from an osteopenia point of view without consideration of the breast cancer he is not treating me for. He’s treating me for other endocrine issues. I think my oncologist needs to state his BC reasons for suggesting Zometa. I have original medical plus supplement and part D. Zometa would be covered under part B and supplement. Prolia should be part B and supplement since an in office injection. Thanks for your input. I think my oncologist should order the next DEXA since he has been ordering and go from there. My endocrinologist needs my full related history if he is expected to manage. Thanks again.

@celestebradham
Thanks for your input. Yes, I feel like a ping pong ball with lots of my specialists as they are all so siloed and wanting to stay in their own lane, especially subspecialists. Sometimes disorders affect more than one specialty and the patient is left trying to connect the dots. Drives me crazy. My PCP told me my medical history is too rare and complex and local providers don’t have the time to deal with it. Great, but I can’t drive to UCLA for every issue since that’s a 4 hour round trip in traffic. Sheesh. Just want to be sure I’m using the right specialist to monitor bone health in my case. Thanks again for your response.

This kind of hits home for most of us. I was diagnosed at 70 with IDC. Found on mammogram, DEXA scan was done the same day. It showed mild osteopenia in left hip and PCP put me on once a day calcium/vitamin D. Went through the breast cancer diagnostics and treatment (surgery, chemo, radiation) and then started ai therapy - would be about 8 months after that dexa - increased calcium to twice daily per oncologist. Had another dexa about 5 months later and while it still showed the osteopenia, it was actually a little better. Onco recommended Prolia injections because of the ai therapy but I declined. I’ve read up on Prolia and what it does and will not go into that cycle. He accepted that and said we would just do bother dexa in a year. About a month before that next scan, he talked about Zometa and wanted to start it because it would be preventative for bone problems and helps prevent mets to bones but told me I would have to see a dentist before he could do it. Unfortunately, the chemo and subsequent ai therapy had destroyed my mouth and I explained I was already seeing the dentist for problems - crowns, periodontal disease with bleeding. Recommendation was to get dentist approval that we could start the medication - approved because nothing was dealing with bone, just teeth and soft tissue. Anyway, this dexa scan came out NORMAL. So I ended up not getting the meds because insurance would pay for meds if I was on ai and had osteopenia but with the normal bone scan, they wouldn’t pay for it just as a preventative measure. All of this is done through PCP and onco. I don’t have an endocrinologist and it has never even been recommended. One comment made her however is so true - that the oncologist treats the cancer but not the side effects of the meds. While he always asks about side effects, rarely offers any recommendations other that to ask my PCP. My blood counts have never returned to normal after chemo (will be 3 years next month) and tumor markers are constantly fluctuating which kind of says maybe there something going on but neither will recommend anything to try and figure out if there’s something else going on and where I should look to clarify what and if treatable. I have another 2+ years on ai therapy and will just keep plugging along.

@mistymar
Thank you for your story. Good to know the oncologists are not treating side effects. I always felt like mine was passing the buck. I already have an endocrinologist for other conditions otherwise my oncologist may have passed to my PCP who has checked out. I need to find a new PCP but the ones I choose are never accepting new patients. Amazing your bones are back to normal. Mine have been in decline so I’m afraid of the next DEXA results. I wish you the best in your journey that the cancer does not come back. ❤️

@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!