Bone Density Scans

Musical, I had my ovaries removed after chemo and then started femara. When I was DXed, I was not yet in menopause, but getting close (47 years old).

My docs are pretty vigilant about monitoring my bone density. Initially (first year) the bone density on my hip took a real dive, but then it stabilized and since it was better than normal to begin with, nobody is concerned. It is now just a tad below normal, but not osteopenic. This would seem to support your nurse's assumption.

However, my spine started at -1.6, so already not so great. It did not nosedive like the hip, but it has gotten steadily worse over the last 3 years. One of my vertebrae is now all the way into osteoporosis territory.

I have seen bits and pieces here and there (can't remember specific sources) that seem to suggest that femara is particularly hard on the spine. No idea why. But it seems to me that anyone on femara should have a DEXA every year or at least every other year. Also both hip and spine should be measured.

Musical, I am pretty sure the BDS is a DEXA, i.e. the same kind of scan.

As for femara, I should have said AI. I think the pattern is typical of the AIs generally. It sounds like there is some confusion at your doc's office, the way I read it. That nurse needs to read more if she is going to have such categoric opinions about things. As for staying on the meds, the latest research does show that extending the use of hormone treatment is a good idea.

What is SdFx?

Musical - did you get that next bone density scan? I too had to fight - I had a baseline scan then nothing for 4 years. I started to have fractures (for no reason in some cases) and had to beg to get another scan. My MO kept insisting my bones were strong at the start and he was sure what was happening had nothing to do with my AI's. He strongly encouraged me to continue to the use. I stopped taking them a year early.

The scan I finally got showed: Therefore, at present, significant osteopenia is noted at the spine and hips; there is currently increased risk of fracture as predicted by bone mineral density at the spine and hips. Over the past nearly 4 1/4 years there has been a significant decrease in BMD at the spine, and a significant decrease in BMD at the hips.

I had baseline DEXA scan following chemo and I was osteopenic.....while on AI's, onc ordered annual DEXA scans...after a year on the meds, I was osteoporosis....started on Actonel (biopshosphonate) and bones improved and went back up to osteopenic. When I quit AI's after 3 1/2 years I stopped Actonel...Two years later I was osteoporosis....another 3 years later (5 years after stopping AI's), my bones are still declining but it is slow. My pcp a couple years ago did not want me on biophosphonates as they are now saying only 10 years and I had taken them for 3 years plus she said she would rather me be on them in my 70's than in my 50's. I need to see my pcp to follow up on the latest DEXA scan done last month to see what she says. I walk daily at least 15K steps and my onc tells me that the walking is better for me than anything else I can do...so that is what I'll keep doing...I love walking...it is a good stress reliever!!!

DoxieMama,

Thanks for sharing your story here, and we hope that you hear from others as well! You are in a difficult position to not feel that you can trust your physicians where you live. This may be a good question to call your treatment team in St. Louis about however. We are thinking of you, and hope that others will share their experiences with you.

Warmly,

The Mods

I had a BDS last week. Today I got a letter saying they hadn't been able to get through to me via telephone. I've told them over and over, DON'T use the landline (unfortunately it's in my medical records) and they never think to try my cell. It was apparently the order for the BDS and the prescription. On the 2nd page it said Diagnoses: malignant neoplasm of the breast

age related osteoporosis. What the what? If the letter is to tell me I'm to have a BDS, is it or is it not a diagnosis? I'll call tomorrow and find out. Argh...

Hopeful, thanks for your feedback. I know that some women take bisphosphonates as a means of BC recurrence risk reduction. I will ask my MO about her opinion on the latest studies in that regards. My question however, is about the BMD threshold for their prescription. Are they usually prescribed when osteoporosis is diagnosed? When BMD falls below a certain level? When there are other contributing factors?

Treatment indications based on DEXA scan results are generally determined by the WHO (World Health Organization) guidelines. Those guidelines include initiating treatment in postmenopausal women and men aged 50 or older with a known fracture, or patients with BMD T-scores of less than or equal to -2.5 at the femoral neck or spine on DEXA, or with a T-score of between -1.0 and -2.5 at femoral neck or spine (the def of osteopenia) when this patient also has a greater chance of fracture based on the FRAX fracture risk model.

I was started on oral bisphosphonates shortly after a total hyst/ooph at the age of 45 when my baseline DEXA showed that I was mildly osteopenic. I could not tolerate the oral drugs due to a previous surgery for reflux and military hospitals did not use Reclast by IV. I remained relatively stable for nine years until chemo and six months of AI drugs. My density had worsened to just short of osteoporosis so was started on Prolia, which has reversed me back to a normal density. I have had a pretty severe fracture after a fall on concrete steps, post hyst/ooph but before breast cancer, and my FRAX score is high. MOs and insurance coverage vary on when to start therapy, and which type to use.

You're welcome! I should add that I was of course aware of my broken ankle and knew my FRAX score, but didn't discuss either with my MO, his decision to start Prolia was based strictly on the difference between my DEXA done same day as mammo/US that led to diagnosis, and the one done six months after starting Femara

Recently my MO said that she usually looks to starting a bone drug if the T-score drops to -2. My GP wanted to start me on one a year ago but I declined and thankfully my scores were still above -2 at the last dexa in September 2015. A second-opinion MO a couple of years ago did mention the potential benefits of being on one in relation to recurrence but it wasn't a strong recommendation.

Ratherbecooking - I've been taking Prolia for 8 months now. I've had zero side effects. I'm the one who started this thread so... No SE is pretty amazing. Also - I was only diagnosed as having osteopenia. My PCP usually listens to me. I've been told that a more conservative dr would have made me wait

I got my baseline DEXA scan the day I went for my radiation sim session, and it showed I was very osteopenic in the R femoral neck and moderately so in my c-spine. My MO wanted to put me on oral alendronate but I have a history of GERD verging on erosive esophagitis, so that was a nonstarter. I asked her about Prolia, because I’d read it was superior to I.V. bisphosphonates (Zometa, Reclast) in both strengthening bones and preventing bone mets. She said that the data on that wasn’t published yet (though she did admit that the next ASCO convention would probably announce new study results), that Prolia wouldn’t be covered, and that Zometa was “good enough.”

I wish my Medicare Part B (BCBS) or D (Humana) carriers would pay for Prolia. I have very difficult veins and it doesn’t help that my R arm is now off-limits for venipuncture. I also knew I would suffer severe side effects (“faux-flu” for days). Prolia is an injection and Zometa is an I.V. infusion. Zometa is covered, no questions asked, by Part B and its supplements because as an infusion which must be given at a facility (i.e.,chemo suite, hospital, clinic, doctor’s office), it is considered not a “drug” but a “treatment.” BCBS refused to cover Prolia because as an injection, it is at least theoretically possible to be self-administered (though in practice it never, ever is), and is therefore not a “treatment” but a “drug;” and Part B doesn’t cover “drugs”—that’s what Part D is for. But Humana Enhanced refused to cover any of it because Zometa is cheaper and is used for the same purpose. Prolia is $5K per shot, twice a year for three years. We have the money, but my husband says we should save it for a “rainy day,” i.e., if I get mets and need Ibrance, which is not covered, costs $9K/month without a co-pay coupon—and you can’t use any such coupons if on Medicare.

(That’s also why even my generic letrozole isn’t covered—Humana insists on my first “failing” a 3-month trial of generic anastrozole, and then the patient agreeing to take whichever mfr.’s generic letrozole the preferred pharmacy dispenses. I insisted if they wouldn’t cover branded Novartis Femara, I would take only Roxane or Teva letrozole, which have the fewest inactive ingredients and mildest side effects. Humana’s response was, because I specified a mfr., to call Teva or Roxane a "non-preferred brand,” which not only isn’t covered but doesn’t even count towards the out-of-pocket needed to pull me out of the “donut hole” and into “catastrophic coverage”).

So my MO’s nurse, at my insistence, said my MO would try for a prior auth. from Humana for Prolia but that it’d probably be denied “because they’re all cracking down on prior auths.” Not surprisingly, it was denied. (Wonder how hard she even tried). So I had to get a Zometa infusion. Just as I expected, it took 5 tries to get an I.V. started, the infusion hurt like hell while being pumped, and I was sick as a dog for nearly a week. I told my primary, and he was livid. He said that the latest studies prove that bisphosphonates strengthen only vertebrae, not long bones, and that they can cause some of the very fractures that they are taken to prevent. He is willing to cite my difficult veins, inability to draw from my right arm at all, and severe side effects suffered as justification for a prior auth. appeal—and he says he won’t stop at one attempt.

Ladies, I wish I could have a physician who takes care of my bones. Only my GP and the orthopedic surgeon are worried about it but the MO or RO don't care. Anastrozole is affecting my joints and deforming my knuckles. I am taking this pill since June and it's been effective into controlling the cancer.

For my bones I have calcium 600 mg and Vit D, 10,000 units weekly besides the 400 units I take daily. What can I do to avoid more fractures? I already had multiple fractures in my right foot due to torsion. I have to worry about how I am moving and have to use a walker to keep my balance.

Any advice how to deal with this?