Anastrozole has ruined my bones.

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

  • Dear KiWiWife, 

    You are so upbeat and informative, thank you for your thoughts.

    i really never missed my breast, I was almost 68, widowed.  Anastrozole was so exhausting and hurt so much, a breast was of no consequence, life was.

    when I quit Anastrozole, began walking, taking supplements and going back into business with old friends.  Once I felt well, I decided on reconstruction.  The epidemic was just hitting America and my scheduled surgery was canceled.  Now I am set to go, like my surgeon very much.

    a few months ago a fellow fell in love with me and I am glad I was decided on my surgery before we met, he did not want me to have it.

    There will be pain, a graft is being taken from my back, but I heal well and with the expander then implant, my right breast will be done by 12/2020 and the left breast will be done to match, 1/2021.

    i have 2 middle aged, lovely daughters, have had an adventurous life.  Being upbeat and fearless is a gift I am able to give them.

    many hugs

    I use my middle name, Paige

     

     

  • Hi sue mary and others,

     

    I had a mastectomy in February which went well with no further treatment needed but put on Anastrozole in March.  So have been on it for 4 months and joint pain/stiffness seem to be getting gradually worse, especially my hips.  i am now feeling aches and stiffness affecting me considerably, enough to consider stopping it.  Especially if there is only 1% in recurrence incidence. Interestingly to protect my bone density I was also put on a drug called Iasibon (Ibandronic acid) and was told I would not need a dexa  scan.  
     

    What does the Australian study reveal?  
     

    thank you all for you help and best of wishes to you all.
     


     

     

  • Hi annechristina,

     

    sorry to hear how the anastrozole is affecting you. If you google long term side effects and efficacy of anastrozole you will get a list of more recent studies which will inform you better of what is being found - it is still a relatively new drug for cancer treatment and not every thing is known. 

    It is a long trawl and there’s so much that you really need to look at it yourself to take what information you need to know from the studies and trials. I would look to find out what the findings/side effects are for building bone density before ascertaining the need for this and whether  a DEXA scan to determine your baseline bone density would be more beneficial before you were put on these prescriptions. The more information that you have the more that you will be able to ask your consultant the correct questions so that he/she can give you answers so you will to be able to judge for yourself what treatment is the best for you. For me it was a question of balancing one risk against another - there was nothing that gave me a perfect outcome - and asking myself how I would feel if the cancer did come back. 

    I hope this helps 

     

     

  • Hi 

    It's always reassuring to hear about other peoples experiences while taking this medication.

    I've been taking Anastrozole for just over 7 years.

    I have just found out I have high cholesterol and after a recent Dexa scan osteoporosis.

    I am coming off the medication immediately.

     

     

  • After reading these posts I have discussed with my husband and have made the decision to stop taking Anastrazole. I have done everything my consultants have advised- double mastectomy, chemotherapy and I'm still having Herceptin injections til April. Throughout, everyone around me have helped me keep a positive attitude.

    I thought I was over the worst. Then I started this treatment. After 6 months of taking my daily dose, I have gone from being a fit and healthy 59 year old, hiking for miles and regularly taking part in Body Combat, Dancersise and Aquafit classes, to feeling like an old lady with back and joint aches and pains- my back feels like it is starting to stoop. Not to mention hot flushes, bowel issues, pins and needles in my hands and dry skin. My body has been through enough and I'm not willing to forego 10 years of living a full life for minimal benefit and the risk of osteoporosis.

    Took my last one last night. Of course it's a personal decision and everyone must weigh up the pros and cons. I wish you all a happy and healthy 2021 and sending hugs to anyone who is suffering with nasty side effects. And thank you for sharing your own experiences. xx

     

     

  • Hi Sandra-Ann,

     I wish you luck. It is a personal choice - weighing up your own risks versus benefits. I managed 11 months of a 10 year course on anastrozole before coming off it because of very bad side effects. I have no regrets 4 years down the line - other than I wish I had stopped taking them earlier. If I am unlucky enough for my cancer to re emerge in the future, then so be it. I have a life I can live and appreciate now - which I lost when taking anastrozole. I wish you too, a happy and healthy 2021, getting back to the activities you enjoy. 

    Best wishes

  • KiwiWife,

    Thank you for your reply. I continue to feel better (after a few days with withdrawal symptoms I think) with much less aches and pains. Glad you're doing well. Life does need celebrating, particularly in these times.

    Best wishes from Sandra x

  • Please can you name the capsules for the joint pain you have taken....thanks.

  • Sorry but your post is to the wrong person, I asked about the capsules and never got a reply. I can give a little further info on the pain though. On the advice of my palliative care doctor I stopped the anastrozole for a time to see if it made any difference. To my surprise it did not reduce the pain at all. So either the damage was done or it wasn't the anastrozole that was causing it in the first place. I would also say to think very carefully before stopping any medication that may reduce the risk of a reoccurrence. I now have secondary cancer in my bones and received a terminal diagnosis.

  • Hi All

    I wish you all well along your journey. I am about to start anastrozole but want to know whether there is any meds that might 'trick' the body into belieiving that the estrogen has not been blocked. Oestrogen can help us maintain good health and without it - I dread to think..An endocrinologist might advise..Also the hair thinning sounds exceptionally worrying - does anyone use a particular shampoo/hair dye..

    What a brutal drug!

    Take care all