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Anastrozole has ruined my bones.

siuin
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Hi There

I was diagnosed with stage 2 Oestrogen positive Breast cancer in 2016. After just 3 round of chemo, my ping pong ball sixzed tumour had disappeared and the cancer had left my lymph noed. After 8 rounds a mammogram had showed that though I was clear, calcium depositis on my breast might flare up into cancer and so I had a full mastectomy of the right breast and had 14 nodes removed. The nodes came back clear and the breast was cancer free though I did have dome precancerous tissue. I had had a complete pathological response which considerably increased my odd of not having a recurrence, After some months I had my healthy breast reduced from an f to a c cup to match my new implant and the removed tissue was completely cancer free. I then began anastrzole with zoladex injections to stop my periods. I also took part in the palbocciclib trial from 5 cycles until it caused my to reject 2 implants and developed sepsis.  

After a year on Anastrozole a dexa scan showed that I had gone from moderate osteopenia -1.7 to osteoporosis -2.6. I was horrified. I asked the oncologist what my chances of recurrence were. She said 5 to 10% if I take the anastrozole and 7 to 10% if I take nothing.  So I stopped taking it. I worry that I have gone against my oncologist but if I keep taking that drug I reduce my chanced of recurrence by 2% but will definitely ruin my bones. I haven't told my oncologist yet

  • Offline in reply to poland19

    Dear Poland 19,

    I have read your parent's story, which you tell so beautifully, I have read it many times.  So amazing isn't it, what we find out what we are blessed with.  Thank you so much, every time I read what you are doing, I smile so much...  Hugs, hugs, hugs

  • Offline in reply to Penelope1

    thanks Penny, I had good news from my new boss/line manager, she has got HR to agree they should pay me some sick pay for being off, which is about time too!  And theyve suddenly got excited and want me to go in for occupational health workover and planning for my return - 8 am in the morning and needing a lift isnt exactly the best start to thinking about working, but the nature of my job (making notes and supporting disabled Uni students) means Im now booked to do about one day a week, and Ill be surrounded by future nurses, being trained by very experienced nurses, so if I feel weak and wobbly I should at least feel confident somebody will be able to look after me! Its just nice to feel taken seriouisly and be starting to deal with emails and things again. its like when I had the kids and felt my brain got chucked away with the placenta, I felt so dozy and stupid most of the time I've been off work I dont know what Ill be like at work! anyway, at least its a start back to new normal.

  • Offline in reply to poland19

    Good for you!  Your humor just knocks me out.  I'm not funny, but I LOVE to laugh!!!!  I'm thinking of you and what a treat for the students to have you there....

    a hundred hugs and happy thoughts, Paige (I use my middle name)

  • Offline in reply to kibbles

    Yes, terrible pain in my right shoulder blade. Feels like a knife in my back, through to behind my right breast. 

  • Offline in reply to kibbles

    Yes, felt like a knife was in my right shoulder blade, painful hip, wrist, fingers, knee and toes! Also dreadful sweats where I literally poured sweat day and night. Plus depressed as hell. Also continence problems!  Breast Cancer nurse suggested I come off for a month. Week 4 and feel so much better. Still have sweats but they're more manageable. 

  • Offline in reply to jennyr

    I’m new so I apologise if I’m posting in the wrong place!

    I had a lump and sentinel node removed followed by Radiotherapy three years ago. Since then I have been on Anastrozole. My finger joints are very painful and I struggle to bend my fingers or to grip. I was seen by a rheumatologist 2 years ago who told me that the damage had been done and that there was no point in coming off Anastrozole.

    I’m now really struggling with back and hip pain. My Dexa scan three years ago was good so they said I wouldn’t need another one. Recently, during lockdown I’ve had xrays and an MRI on my spine which shows osteoarthritis. Could this too be attributed to Anastrozole? It hadn’t crossed my mind until yesterday when I saw this thread!

    I’ve been in agony and was even given Tramadol! (Which I returned to the pharmacy after a few days because of side effects). I’m still in a lot of pain.

    What do you think?

  • Offline in reply to Suemary

    I'm sorry, impossible to advise. All I know is that my aches and pains are so much better now off the Anastrozole. I've no intention of going back on it. I was especially worried about it affecting my bones as I have arthritis and scolosis. All I can suggest is to speak to your consultant or cancer nurse. I'm very sympathetic as I really struggled on the medication. I'm so much better off it and I'll have annual mammograms. Good luck. 

  • Offline in reply to Suemary

    Hi Suemary,

    so sorry to hear about your experience. I had a mastectomy 4 years ago, didn’t require anything other than being put on anastrozole. I wasn’t given a DEXA despite having scoring 9 on the FRAX test but told I would be well monitored. The side effects were very bad for me - anxiety, intense flushes and pain. I researched extensively - the Australian NHS website was very helpful. I then consulted my surgeon as to what coming off the drug would do to my likelihood of my cancer returning. I weighed this up with the likelihood of the drug causing osteoporosis to me and my quality of life. I decided to come off the anastrozole after having taken  it for year. My symptoms reduced dramatically when I came off them.I made some pretty radical lifestyle changes to rebalance the odds in my favour. It’s a very personal decision.

    A year later I had some pretty painful musculoskeletal problems - shoulders, neck,hips and lower back. I got a DEXA scan eventually when I fractured ribs doing simple stretching exercises to release chest tightness.These showed that I was osteopenic with one hip much worse than the other which an X-ray confirmed  will need a replacement at some point. I cannot say if my year on anastrozole caused this - it will not have helped. I did not have any help from my cancer specialists to get the DEXA. Perhaps because I had stopped taking anastrozole. 

    It is not an easy choice but is ultimately yours to make with the best advice you can obtain. Your consultant should be able to give you figures for what your risk of cancer recurrence would be. It is certainly worth finding out your own facts and figures as to the adverse side effects of anastrozole or any other of the drugs you may be offered. The anastrozole is certainly extremely effective at preventing cancer recurrence according to the statistics I found in my research.

    I have found diet, exercise - Pilates classes, swimming (when available!) and walking help to maintain what I have be as pain free as is possible. I also have a very good osteopath who had me diagnosed, spot on, before my DEXA and X-rays were taken. She helps me with hands on physio and the correct exercises to strengthen and maintain muscles - I am greatly missing her during the lockdown. I did try  NHS physio, they were as helpful as they could be but ultimately  but they weren’t   hands on or specialised enough to help me. Whatever your decision on the anastrozole I would recommend that you try to access some professional Physiotherapy . Pain medication can help initially but the right physio and exercise can keep you as pain free as possible with the minimum of painkillers. Physio seems to be online at the moment but hopefully that will change soon.

    I wish you the best of luck.

  • Offline in reply to KiwiWife

    WOW KiWiWife such a great description

    I had a mastectomy 5 years ago and will begin reconstruction next week.  I stayed on Anastrozole a total of 2 1/2 years, a break after two years and then quit short of the recommended 5 years.

    i agree with excercise, healthy eating and I drink aloe and lots of great supplements.

     

    I agree, a personal decision....

  • Offline in reply to Penelope1

    Hi Penelope1

    Good luck with your reconstruction, I hope that it all goes well and that you will be pleased with it. We take a lot of things for granted and only miss them when they’re gone! It’s not the same, but it is good that there are options for us - before and after surgery.

    Best wishes 

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