Who explained your bone density test results to you??

viewfinder

Did your oncologist explain your bone density test results to you, or were you sent to someone else for an explanation?

Mine simply told me I had osteoporosis. When I looked of at the summary in My Chart I did not really understand the DXA findings. I asked my oncologist about it and she wants me to see an osteoporosis nurse practitioner to explain it.

Why the heck do I need separate appointment? Don't oncologists explain these types of test results to patients?

Thank you.

quietgirl

I think it really depends on the oncologist and also where you live. You have medical personnel who know a little about a lot of things and then you have ones who know a lot about just a few things. So on some levels you have doctors who will refer you out not because they don’t know anything about a certain field but because they would rather you have an expert in that field. From a patient point of view in can feel like you are being just shoved to someone else and you have to establish yourself as patient again. As much as it’s a pain in the neck, maybe because the person who you are being referred to is an expert in that specific field you will end up with a clearer explanation and action plan. Still I get that it’s a pain and just seems like one more person added to your care team.

viewfinder

Thanks quietgirl!

There is a huge Prisma system where I live. Almost every doctor I've visited (a lot!!) is part of it.

I'm just so sick of going to doctors: 42 visits since the first of the year (in office, teleconference, in-home physical and occupational therapy).

I insisted on a teleconference with the osteoporosis nurse practitioner; I don't drive or have a car. Though there are services that take you to and from a doctor, you get no help getting in and out of the van and I can't do so without great difficulty. I'm concerned about getting hurt. My daughter helps me but the appointments have been endless.

alicebastable

My PC had ordered my bone density scan right before I was diagnosed in 2018, and it showed both osteoporosis and osteopenia. Two years later, my new PC ordered the next one. I explained to her I didn't feel the technician had given me time to get in a completely flat position on the first one. Sure enough, after the second scan, where I insisted on enough time to get situated, it showed remarkable improvement, more than just the daily vitamin D would have caused. The doctors NP was flabbergasted at the results until I told her about the positioning So no matter who orders the scan, do be sure of correct positioning when it's done.

viewfinder

thanks for the information alicebastable.

I'm also trying to find out, for those who have had this test, who went over the results with you?

quietgirl

my test is on Tuesday (it's suppose to be just a baseline not scheduled because there was concern but rather since I have a family history) but I will let you know if they refer me to someone else. I feel like unless something is of concern it will just be everything is fine and I won't have an actual appointment with anyone. I do understand on the whole one more appt/medical person to deal with. I had just been saying to someone it feels like this year is another day another doctor

I can only imagine how draining all these appointments have been for you this year and adding transportation challenges on top of that. Just want you to know you are in my thoughts and I hope 🤞 that your televisit is informative and not just another run around

Hopefully someone else chimes in and let's you know their experience.

viewfinder

Thanks again quietgirl! I hope all goes well for you.

Can you believe I couldn't get an appointment until mid-September?!! Anyway, I'll post what she tell's me after I meet with the osteoporosis nurse practitioner.

specialk

viewfinder - I initially developed osteopenia after a total hysterectomy when I was pre-menopausal (for uterine fibroids), but I also fit the likely physical profile for risk. I tried oral meds prescribed by my primary care provider, but I couldn't tolerate them. I did nothing for the following 10 years and my osteopenia was stable. Once I started aromatase inhibitor meds my bone density tanked and I started Prolia injections, prescribed by my oncologist and administered in his office. He has ordered my DEXA scans since my breast cancer diagnosis in order to track the need for Prolia and how well it was working for me, but we didn't discuss bone health in depth at any point. However, I don't think I have ever had a doc, either pre cancer or post, actually explain my test results to me, but my report has a pretty thorough explanatory section following each score. The World Health Organization developed the diagnostic parameters for bone density and osteoporosis and the following link has detail explaining this. The info on my report each time I test has the scoring info with it as it is shown in the link. I think oncologists deal with bone health issues that result from cancer treatment, and some prescribe bone strengthening medication to help. Others refer their oncology patients back to their primary care docs, or to endocrinologists to treat bone health issues - it just depends on the individual oncologist.

https://www.bonehealthandosteoporosis.org/patients/diagnosis-information/bone-density-examtesting/

There is another tool used for risk analysis called FRAX. Here is a link to that, it is something you can look at yourself to help inform you about your risk of fracture.

https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9

Here is a similar one.

https://americanbonehealth.org/calculator/

quietgirl

so apparently whoever is making decisions on my test is on vacation or something because it certainly doesn’t take a week to interpret results (okay I know I have been spoiled in the last 6 months because everything from the womens cancer has been within 48 hours). The person who administered the test said I would see the results in my chart and my doctor would follow up with an email probably. I just thought I would know by now (because the office will be closed this Monday it will be over a week once I hear. Like I said I know I’ve been spoiled. But obviously at this point it doesn’t sound like someone else will be explaining the results but I’m still assuming this is going to end up being just a baseline with nothing that requires anything else at this point.

Viewfinder I think it’s horrible you have to wait two months Without them even suggesting for you to do something while you wait whether it’s a prescription or a set of suggestions which goes back to the whole point of the thread the Dr who requested the test explaining it more.

viewfinder

Specialk,

Thank you for your reply! Lots of good information. I will follow the links you shared this weekend.

viewfinder

quietgirl,

I too think it's wrong that my oncologist can't explain the test results she ordered. Just said that I have osteoporosis and said to take vitD and calcium and to exercise (I can hardly walk). She also had me stop Anastrozole after taking it for four years.

No explanation of the score or degree of osteoporosis, just that I have it. MyChart only has a sentence or two summary, which I barely understand.

I hope you get your results soon!