I had my 3rd annual oncology appointment last week and was told my 2nd dexa scan wasn’t too bad, but still osteopenic.. I didn’t know I was in the first place! I see so many women on this forum having zometa infusions for small tumours, and I don’t understand why I’m not having them? I’ve been on letrozole for 3 years and I have terrible joint issues - but was told I wouldn’t benefit from them? I had 6.5cm Invasive lobular cancer - mastectomy and DIEP reconstruction - oncotype 18, so no radio or chemo…
I’m prescribed accrete D3 but wonder why some people are offered the infusions and others aren’t? Just a bit confused really x
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Hi, I was also diagnosed with o osteopenia also and didn’t get offered the infusion, but was prescribed alendronic acid tablets along with vit. D and calcium. Have finished all meds now and my osteopenia has improved greatly. I would ask your GP or BCnurse why you have not been given anything to address the osteopenia. You could ask them how widespread the osteopenia is, or if you have access to your records on the NHS app you can look at the results of the dexa scan there. Hope that helps.
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Thank you. Perhaps I will speak with my BCN and my GP.
My oncologist suggested weight bearing/ strengthening excercise to help with bone density, and said that infusions come with risks? She told me the osteopenia is worse in my hips, and even when I told her I’m having to have a steroid injection in my hip this week as I’ve had serious issues for 3 months now, she dismissed my question about infusions. I think I’m just surprised at how common bisphosphonates seem to be given as a preventative treatment, without apparent bone density issues, yet I haven’t been and I have issues! I do worry about my risks and how letrozole can only make things worse 
x
If your Dexa “wasn’t too bad” and your Oncotype was a low 18, your docs probably think the risk of Zometa side effects outweighs the tiny benefit for you. Stop comparing your journey to everyone else’s small tumors and grill your oncologist on why they’re choosing Accrete D3 over infusions for those “terrible” joints specifically.
I wasn’t offered infusions until I pointed out my ALP was increasing and asked for them. I’m in the US so insurance pays and maybe that’s why I didn’t have issues when I asked but if you think they’ll be good for you I would advise you address it with your oncologist and see what they say.
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@lydi09
I’m not actually comparing my journey to people with “small tumours” - rather I’m confused that some oncologists are clearly more cautious and prescribe for prevention, and prescribe to those who don’t have significant issues, and who appear to be at lower risk. We are all individuals and are treated as such - I’m well aware of that. However, bone thinning is a big fear, as I’m an extremely active person and have struggled recently with my “terrible” joints. Hopefully my next dexa scan won’t be “too bad”.
I’m waiting for results of my 2 year DEXA. My baseline was just osteopenic. Surprising, as I have lifted weights for years and run but I am petite ( but BMI 25) , for which apparently DEXA can negatively downgrade your T score . I also had oncotype 18 and no chemo but I am post menopausal. I am really reluctant to take bone meds, if recommended this time. From what I have read, they “fix” your bones where they are , whereas bone is a living, regenerating tissue . So, when you finish the AIs, it is possible to reverse some of the damage. To keep them in good health , we need to “stress” them each day. Not just heavy weights but shock - so jumping, safely . Also , important to work on your balance , to prevent falls and strengthen muscles and ligaments that support your bones. There is a scan called REMS that can report on the quality of your bones. Once I have my DEXA result, I am going to see if I can find one of those.
Just edited this to say that my ALP has risen to about 150 but was told that unless it goes above 200, not to worry …
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@klf Thank you - this is very useful and interesting. My oncologist did mention jumping actually! I obviously need to trust in her advice, and not worry that I’m missing out on treatment that probably has its own risks. Had a wobble recently - just needed others in a similar situation to me, to give me reassurance I think. (I was 50 at diagnosis and BMI of 23) 
Good luck with your results xx