Hi everyone, I have been on letrozole for nearly 2 years, I suffered with a fractured bone in may 2017, after pleading with my gp to be referred for further investigations ( as he didn’t believe that I could break a bone so easily) I was referred for another dexa scan following which I was diagnosed with osteoporosis, commenced on alendronic acid then referred for a nuclear bone scan which I had in September, repeated in December 17.
i have been waiting for the results, ‘my case’ was heard at MDT meeting last week. I had phoned up the Breast care nurse to inform her about my recent fracture so that the consultant could be made aware before the discussion last Monday so decisions could be made with the most accurate information.
I have stopped taking letrozole , last week thinking that my treatment would be changed to something kinder on my bones. Well today I spoke with the secretary who told me that the consultant was happy that my bone scan was stable and that treatment is to continue…
i am really shocked by the lack of oversight into my case and feel that they have only looked at the bone scan, not taking into account the 2 fractures I have suffered in 7 months, so things are not as stable as the scan suggests. I expected a referral to an osteoporosis specialist, (which should be the path followed ) for insight into my bone health and a change of medication. How Can I continue to take this knowing that is destroying my bones ? The alendronic acid can take up to one year to make a difference.
I have aready spoken with the lovely staff on the helpline and have requested an appointment with my oncologist, I will ask my gp to refer me to an osteoporosis specialist.
I am just wondering if there is anyone who has experienced this and what your experience has been.
Hi Daylily,
So glad to hear you’ve got an appt with the oncologist, you obviously need some answers on this.
I’m not on letrazole, but as a thought, is it also an idea to ask the oncologist about having tamoxifen instead?
Apparently, it works differently & protects bones in post menopausal women as it acts more like hrt in this respect, or so I’ve read.
There are certainly other post menopausal ladies here on tamox, I’m on it myself & agreed with the oncologist to stay on it, rather than change to AIs, as I’m fine on it (my father has severe osteoporosis of the spine).
I understand AIs are technically better than tamox, but I have also read that there isn’t much difference in mortality/morbidity rates.
Wishing you the very best with it all
ann x
Hi daylily. I was wondering if you’ve made any progress in your investigations. I’m in a similar position. I have 5 rib fractures, all happening spontaneously within the last year and a half. None have fully healed. The oncologist seems very unconcerned and just keeps ordering follow up bone scans to check for stability. Each scan uncovers a new fracture. I was really worried about bone Mets but now I’m thinking might be the letrozole. I too have been diagnosed with osteoporosis and I know it’s important to stay strong and exercise but any activity aggravates my pain. It’s very frustrating
Hi curlylocks , oh goodness me you have also been through such a lot. It never sits comfortably with the ? Of mets always lurking.
I have been seen by a consultant who specialises in Osteporosis with Breast cancer , he referred me back to my oncologist who has taken me off letrozole , she said that it was causing my joint and bone pain , which were at times unbearable I felt so unwell.
I started tamoxifen beginning of September and up to Now feel much better. I can’t say that all my pains have gone but nothing like it was on letrozole !
I haven’t had any follow up scans to check for any more fractures but I recently was seen again at the Osteporosis clinic , I recently hurt my foot after stepping off 2 steps , I thought that I had fractured a. One in my foot but didn’t. I have had new symptoms in 2 places in my spine ( Osteporosis is all through my spine ) with pain in my lumbar area going through the back of my leg and also in my neck.
I was sent for x-ray only on my lumbar region to see if I have a compression fracture that was only earlier this week , so no idea what the results are.
I have to carry on with the alendronic acid and adcal review next year after another DEXA scan.
Get really fed up at times have bone pain from my rib fractures, been having Breast pain in my ‘good breast’ but get up like we do and go to work with a smile on my face.
I hope that your doing ok , thank you for your message xx
Morning, sorry to hear that your suffering as well. It’s quite debilitating isn’t it.
I don’t feel as unwell on the tamoxifen, my joint and bone pain isn’t as bad as it was on letrozole, I still have them particularly in my ankles , bone pain struggle sleeping at times.
I have started taking CBD oil which does help me sleep.
I have recently seen my consultant who sent me for x-ray on my spine and repeated blood tests , the plan is to continue on alendronic acid , adcal , repeat DEXA next July before my appointment so I can discuss the results immediately.
I really struggle emotionally at times with it all.
We all go through so much in our journeys and I know I put on a very brave face each day.
Hope that your pain eases soon , have a lovely day.
Xx
Curlylocks have you had blood tests as part of your investigations ? I am in a similar positions - unexplained rib fractures ,fractures elsewhere femur ,feet ( toes ,heel) originally looking at bone mets - but biopsy was normal and Oncologist was always doubtful .They are now looking at a quite rare bone disease HPP which fits with all my symptoms - if you have it you have consistently low phosphorous levels in your blood - may be a possibility ? So hard to tease things out after hormone treatment etc
I’m waiting to see rheumatologist after neither Oncologist, orthpaedic surgeon or neurosurgeon could come to a conclusion as to what on earth is going on !! Whatever it is it’s debilitating and painful .
Hi Jill hope you are feeling OK did you see rheumatology yet hows things for you are you still having trouble with your spine im seeing my surgeon on Monday getting op date bricking it!!!