OSTEOPOROSIS - any advice welcome!

Dear all,

I was dx about 6 yrs ago, bilateral mx, removal of ovaries, early menopause aged 40 yrs, treated with Arimidex.

After I had my ovaries removed in 2005, I had a DEXA scan to assess my bone density and was told by my GP that all was “normal”. I then saw another GP about something else about 18 mths later, and in passing she said that my dexa scan showed Osteopenia(pre- osteporosis).
Obvously I was a bit shocked by this having been told all was fine. I spoke to my GP about this, she said not to worry, don’t need any treatment and that was it! I asked when I would need another scan, and was told I didn’t.
I have seen her on and off since then with other things, and have asked for a scan to see if all ok but told not needed, and no supplements prescribed( so have been taking Osteocare, an over the counter calcium supplement).
However, have been a bit concerned and recently asked on here if anyone else who was taking Arimidex, whether they were being scanned (bone density) reguarly and had they been prescribed calcium supplements?
The replies concerned me when most replied and said that they were being scanned every 2-3 yrs AND been prescribed calcium. Panic!!!
I went back to the dr and DEMANDED a bone density scan as I have been on Arimidex for nearly 5 yrs. This was done reluctantly, to be told this week that the results show I now have fullblown osteporosis and need to take some prescribed adcalD3 and bisophosphates.

Has anyone else got Osteoporosis? I would really be grateful for any advice on management, things I can do, exercise, anything.

Also, a word of warning for any of you taking Arimidex- insist on regular bone density scans and ask whether you should be taking anything else with it, particuarly if you have had a premature menopause or are post menopausal.
I would be interested to hear from Breastcancercare if they know of any protocols or mangement guidelines for doctors prescribing Arimidex regarding the monitoring of bone density/ prescribing of calcium supplements.
Take care, XXX

Hi Happy shopper Am much older than you 59, but have/had oestrogen and progesterone +ve tumour. Was put on Arimidex because of age and post-menopausal status. Was sent for DEXA scan as a routine. Results of this 29/7 showed that I needed Adcal D3 and then also bisulphonates ( FOSAMAX) So sorry to here that you have had a delay in ascertaining your bone density staus. I also found the National Osteoporosis Society help line really good. Google it I will look for their ‘link’ Hope this helps Jackie

Thanks Happyshopper - this is a subject that I am also interested in so hope you get some responses. My bone density scan was fine 8 months ago - but am interested to know how quickly thinning can take place and how often it should be monitored. I do hope the new treatment can reverse the process for you.

finty x

hi ,sorry to hear that you have joined the club ,i was only diognosed with osteoporosis after a bad break in my wrist ,i was on arimadex since 2007 have had really bad bone pain and now on adcald and bishoponates too ! must say you need to be really careful of breaks ect as your bones are fragile now .some days i feel like an old lady ,ok i know im almost 60 but these days thats not classed as old ! good luck with your treatments and yes sometimes we have to insist on being refered after all its our bodies !xx

I was given a dexa scan automatically because I was on Arimidex and was told I was osteopaenic. I was put on Adcal D3 and alendronic acid and a year later my bone density had improved in my spine and remained stable elsewhere. I will have another scan next year, two years after the last one to monitor my progress. My oncologist arranges the scans. I assumed this was standard for those on aromatose inhibitors.

The exercise we need to do is weight bearing exercise which includes walking. Apparently walking downstairs is good too. I have tried to do other types of exercise using light weights, at the gym but I developed a problem with my wrists so don’t do much of this.

I had a very complicated multiple fracture of my left arm last year but I did fall very heavily so it may not have been due to the osteopaenia.

All the best
Anne

The nursing team have asked me to post this on their behalf:-

Hello Happyshopper

The use of some hormone therapies used to treat breast cancer, including those that bring about a premature menopause and lower oestrogen levels in the blood, such as the treatments you have had (removal of your ovaries and use of an Aromatase Inhibitor drug such as Arimidex) can result in bone loss.

The National Institute for Health and Clinical Excellence (NICE) has produced guidelines for the diagnosis and treatment of early and locally advanced breast cancer. These include algorithms (pathways) suggested by an expert group for the assessment of bone mineral density and further management based on the result (T score) of a DEXA scan.

You can access these guidelines at the following link

nice.org.uk/nicemedia/live/12132/43413/43413.pdf

and find the information relating to assessment of bone loss and the algorithms on pages 66 and 113

Best wishes Sam (BCC Facilitator)

Hi happyshopper and all,

I was diagnosed with bc in aug 2006, and early 2007 prescribed arimidex and ad cal d3 together. I am puzzled as to why all patients who are prescribed arimidex are not given calcium supplements as a matter of course, as it is well known that arimidex can thin the bones. I was also given a dexa scan,(again as a matter of course) and had one repeated 18months later, which is recommended. I did have to ask for second one, and i am nearly due for a third.
I was given the choice of bisophonates, but as the two scans were similar, just slightly below the norm, i decided to wait, and obviously if there is any deterioration i will take the bisophonates.
It angers me that some of you ladies are not getting the prescribed treatment when taking these drugs.
Best wishes,
Rosie x

hello all,
I was disgnosed with “significant” bone thinning after 3 years on tamoxifen and one one exemestane. My onc said that thinning could be caused by chemo and other hormone therapies not just arimidex (or in my case exemestane). I was prescribed alendronic acid and adcal and 2 years later (during which time I had a regional recurrence and had more chemo and then was put on arimidex) my bones have significantly improved. I am 53. My onc also told me that alendronic acid helps protect against bone mets so am keeping my fingers crossed. I think that it’s important to have regular bone density scans whilst on any hormonal treatment for bc and can’t understand why some people aren’t getting them especially whilst on arimidex.
Mo

Dear all,

Thank you very much for all your comments.

Thank you Sam, for posting a link to see the recommended pathways- unfortunately the link doesn’t seem to work so I am unable to see them- sorry!

I am very concerned that this has happened and I am very keen to ensure that everyone who is given this drug/early menopause at least have the options of supportive treatment discussed with them and they are properly monitored. I was concerned about this but my GP wasn’t, and her rather cavelier management has now left me not knowing when, over the course of 5 years, when this osteoporosis actually began and therefore how long I have been without treatment. I did take calcium supplements (Osteocare) from over the counter because I was aware of the potential risk of having osteoporosis whilst taking arimidex, especially as I had an early menopause. However, despite requesting regular dexa scans during that time this was dismissed as not necessary by my GP. In hindsight I should have got them done privately but was told not needed.

Anyone else been told the same or differently?

I feel very strongly that there should be very clear guidelines for this (ie treatment with arimidex, with early menopause, treatment with tamoxifen… etc, and that these should be discussed with the patient thoroughly at the beginning of treatment and on a regular basis throughout, with possible reassessments and reviews of medication/side effects on a regular basis throughout the normal course of 5 years.

best wishes to all, XXXXXXXXXX

Hi Happyshopper

Please try the NICE link again as the first page is blank and you may just need to scroll down it a bit to see the text, hope this works

Best wishes
Lucy

Hi Lucy,

Thanks for that. I have tried the NICE site and unfortunately when I try to open this particular guideine(early and localised advanced breast cancer ) it comes up with “the file is damaged and could not be repaired”. I will keep trying!

XXXX

The link works fine for me. I use Firefox. Maybe that makes a difference.

Ann

Hi Happyshopper

You can also try this weblink and click on the PDF link:

nice.org.uk/guidance/index.jsp?action=byID&o=12132

Best wishes
Lucy

when i was put forward for my dexa scan my oncologist said i should have had it 2 yrs previously ,but due to lack of funding this was deffered im so angry that i now have the bones of an 80 yr old when this could maybe have been avoided .

Hi Lucy,

Thanks- I tried this and again, when I click on the pdf link it still comes up with “The file is damaged and could not be repaired”. AARRGGHHHH! Isn’t that typical? It will let me open other pdf guidelines but not that one !!! I do have a very old computer though…
XXX

Hi Aroma,
That’s dreadful- they deferred your scan due to lack of funding? Unbelievable. Maybe thats why my GP was so reluctant to send me for them - cost. I would really like to think not…

I am going to put a “constructive” letter together to send into my GP practice,- there is nothing that can be changed in my situation and like you , I am now stuck with the consequences of having osteoporosis. But I would really hate to think this will happen to another patient in the same situation.
Because of the 5 year gap between my 2 dexa scans, I have no idea how long ago the osteoporosis developed and therefore has been left untreated.
Its appalling- you go through so much with the treatment of breast cancer, and then you are “let down” by somwthing like this. By reading the other posts it seems to be some variation of management across the country- why?

That is why I am keen to read these guidelines(will try to access on my daughter’s laptop) so that I can see what it suggests about having regular dexa scans /calcium supplements etc.whilst on an aromomatose inhibitor, especially if the woman has had an early menopause.

XXXXX

Hi , just wondered if any of you ladies could give me any advice as i am at the hospital tommorrow for check a check up with my sister. she had a bone dexa scan following removal of ovaries and commmencing arimadex, this showed oesteopenia -she was started on calcium and zometa(every 6 months) the problem we now have is that her last dexa scan shows further bone loss! Have any of you ladies had further bone loss despite being on bone streghtening drugs, and if so what treatment did you have. I am a bit worried that the bones will get even weaker. best wishes to you all xx

Hello all,

I am really sorry to ask but I still cannot see the guidelines for NICE re: management of bone desity in treatment for breast cancer (the link was very kindly put on here by Sam and Lucy)

I can access the link ok, but when I try to open the pdf, my computer says a big loud NO, and tells me that “the file is damaged and could not be repaired”.

I am bursting with curiosity to see what this says. Could anyone who has gained acess to the NICE guidelines as shown on the link please put me out of my misery and tell me what they say? I would really be very grateful.
Hello Mo, Thank you for your comments. I feel very encouraged that your bones have significantly improved. I have just been started on alendronic acid so I will keep my fingers crossed especially if it can offer some protection against bone mets.
Hi Rosie,I am very glad to hear that you have been so well managed.Thank you for letting me know your treatment- it reinforces my concern that my treatment has not been as good as it could have been, with awful consequences.
Hi Flo,
I am sorry to hear about your sister and the fact that she has had further bone density loss. I’m afraid I am pretty new to all this at the moment but from my own experience I would advise you strongly persue proper management of this and very close monitoring. I have read that weight bearing exercise is good to maintain/build up bone desity, such as walking etc. I walik a fair bit with my dogs but am aboput to increase this !!!
XXXX

Hi

The algorithms are quite long and complicated and there are different ones for pre and post menopausal women. But to condense it hugely, it depends on the bone density score what the follow up should be. For post menopausal women on one of the aromatose inhibitors, for those whose bone density score is worse than -2 (as mine was) the treatment is a bisphosphonate plus calcim and vitamin D and a further scan after 24 months. For those whose score is between -1 and -2 it is calcium and vitamin D and a further scan after 24 months. For a score of less than -1 there is no intervention. I hope I have got this right as it is very complicated. My score was - 2.2 in my spine, I think and from memory, osteoporosis is - 2.5. Mine had improved at the last scan 18 months ago.
Hope this helps.
Anne

Hi Anne,
Thank you very much for posting- that has given me a better indication of just how they work out the managerment- thank you for taking the trouble to look at the NICE guidelines for me- I still cannot access the pdf on my computer.
I was unsure of the scoring system and that has made it clearer for me.
Therefore, I guess I need to find out exactly what my score was (I haven’t been told) to ascretain what management I should have had.
However, I’m wondering if the score is less than -1, meaning no intervention, is there any consideration to do another scan during the period of taking an aromatose inhibitor ? Many women on here have mentioned the fact that they have a dexa scan every 2 years whilst on the medication- i am wondering if they are the ones who have the score of less than -1.
Sorry if I have totally confused everyone(I’m confusing myself!!)but I am trying to understand why I haven’t had a dexa scan for the whole 4 and a half years I have been on this drug (had removal of ovaries in May 2005and had first dexa scan. Started arimidex after PE with tamoxifen in Feb 2006 and no further dexa scan until August 2010, which shows osteoporosis in spine.)

Many thanks,
XXXXXXXXXX

Hi Happyshopper

I may know why you didn’t get a scan when your meds changed. I was in the same situation. On Tamoxifen and developed PEs so changed to Arimidex.

This was organised via the GP and not my Oncologist and I only got a scan done because I found out on the internet that I needed one so I wrote and asked.

I suspect because the change of medication was not a planned one we may have slipped through the net. I hope you are given the right treatment now and am sorry you have not had the benefit over the last few years.

I am due to finish Arimidex next month and will be asking for a Dxa scan as I have been on it now for 2and a half years