Fractured bones

[Mishy18]

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!!!

[Curlylocks]

Hi chick. What is er8. Did you mean er+. The bone scans have been inconclusive. Always recommend another scan or ct to clarify. Could be lighting up with all the radiation from these tests. I think you’re probably right about the rib area being weak already. Hopefully time will heal   

[Jill1998]

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 .

[Curlylocks]

Hi Jill. You must be in a lot of pain with all those fractures. I really feel for you. I haven’t had any bloodwork within the last year. Haven’t heard of hpp but will definitely google it. Wish you all the best in getting things sorted out 

[Jill1998]

Daylily ,sending you understanding hugs too - ribs fractures so uncomfortable - I also have spine issues - disintegrating here !!!

[Jill1998]

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

[Curlylocks]

Thanks for getting back to me daylily. We have had our share of complications. Glad to hear the tamoxifen is working better for you. I was on it before the letrozole and it just gave me a different set of side effects. One day I hope we get back to our normal before all this treatment started 

[Daylily1803]

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

[JeanBean]

Hi Daylily1803, I was interested to read your post where you indicated that you were on letrozole and because of joint pain (amongst other side effects) your onc took you off it, gave you a month off, and then put you on tamoxofen.  I am in the same position - I have been off letrozole for a month and started tamoxofen today.  The pain in my feet, knees and hands is still just as bad as when I was taking letrozole.  It is encouraging to know that your pain is now less than before and I hope the same happens to me soon. I wish you all the best for your osteoporosis treatment.

[Daylily1803]

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

[Chick1]

Hello again Curlylocks, 

So glad to hear that you are getting Bishphosphonate treatment at least.  I think it can take a while for them to work.  I also get Zometa infusion every six months for 3 years as adjuvant bc treatmentc as well as protecting bones from the onslaught of Anastrazole. 

My understanding is that  rib fractures could be a side effect of radiation but it was rare these days. I still have sore rib area over a year later.   Mind you if the density in the ribs is low or soft already then maybe it does not need much to end in a fracture.  The good thing is that you are not having fractures in other areas so it could indeed be a localised issue. 

I don't think it will hurt discussing the risks and benefits of Letrozole again.  My tumour was ER8 so I know I would have to approach stopping hormone treatment with caution.  Thankfully side effects are OK at the moment.  It may be worth trying Tamoxifen again if it is suitable for you.  If it feels crap again you can always stop it and reassess things. 

I see you also posted on the possible bone Mets thread.  I have been a frequent contributor to that one too!!  Even though I have had the all clear for now,  it still niggles a bit.  I take it that the Onc can not say for definite what has caused it but can say that it is not bone Mets or are you also left in limbo with that?  I do hope not. 

Wishing you all the best,

Chick 🐣 X

[Curlylocks]

Thanks chick. It is very frustrating. Never get a straight answer. He just says hard to know what’s causing it, probably combination of radiation and chemo. I’m getting the zometa infusion every six months which is supposed to help. I was taking tamoxifen but stopped because of side effects and was switched to letrozole. I fear I made a mistake switching. Maybe it’s time to have the discussion with him about stopping the aromatase inhibitors. I need to consider quality of life. Thank you for answering and giving support. I appreciate it. 

[Chick1]

Hello Curlylocks, 

I am in dismay at times.  How absolutely worrying, painful  and stressful for you.  Does your Oncologist or other medical staff not give you any indication of what is causing the fractures?  Are these spontaneous fractures due to the osteoporosis? What is the point of continually giving you bone scans ? I am assuming these are nuclear bone scans. 

If you are having so many fractures,  have osteoporosis and nuclear bone scans are not showing spread to the bones,  then surely you are classed as high risk regarding the  osteoporosis and Bishphosphonate treatment should be considered.  Is it also possible that a switch to Tamoxifen from Letrozole may be a consideration as it could be kinder to your bones. 

I would be harassing the Onco/GP again and ask them what the plan of action is and why.  The GP could refer you for osteoporosis treatment but the bleeding Onc can sort this out as well I think as well as discussing the Letrozole. 

Wishing you all the best, 

Chick 🐣 X

[Curlylocks]

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 

[Daylily1803]

Hi Ann, thank you for taking the time to reply. I have spoken again with the Breast care nurse, who has spoken to the oncologist and she stated that my Breast consultant is able to deal with changing medication If necessary.

I am abit disappointed really, I find my Breast surgeon very difficult to talk to , But here goes I suppose, I shall compile a list of questions. 

Yes I need to know if this is the right treatment now for me, I can’t continue to break bones and I feel that this hasn’t been considered by the consultant. I will ask my Gp to refer me to an osteoporosis specialist for oversight. 

Many thanks 💐

[ann-m]

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

[Daylily1803]

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. 

Thank you all 🌹xx