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

Parents
  • Hello siuin,

    I'm sorry to hear about your situation.

    I can appreciate why you are worried about the effects Anastrozole might have on your bones but before stopping any prescribed medication perhaps it is a good idea to speak with your medical team, as they would be able to help make a more informed decision. So if you don't have an appointment with them already I think it's a good idea to book one in order to discuss your concerns. 

    Also, if you feel like speaking to someone else medically trained might help, feel free to give our cancer nurses a call on this number 0808 800 4040, Monday - Friday, between 9 a.m - 5 p.m.

    Best wishes,

    Renata, Cancer Chat Moderator

  • Thank you for your reply.

    I really don't feel that my Oncologist takes osteoporosis seriously.

    I got his assistant who is also a doctor. She told me that they brought me in early, but not over anything too important, just that the results of my Dexa scan had shown that my bones had worsened and they were just going to give me an injection of Prolia every six months. But because I was expecting this I had my questions read.
    1. What are the side effects of Prolia.? People tolerate it quite well.
    2. What was my T score in Feb 2017 ?-1.8
    3. What was my T Score in Feb 2018? -2.6
    4. Will the Prolia improve my score? No just stabilise it.
    5. If I stops taking Arimidex will the Prolia improve my score? It might.
    6. If I stop taking Arimidex what is the likelihood my cancer will return? It is hard to be accurate but probably 7to 10% chance of recurrence.
    7. If I keep taking Arimidex, what is the likelihood of recurrence? About 5-7%
    I think I want to come off Arimidex. But you will increase your risk.
    But it has given me osteoporosis. Also it is ruining my teeth.

    She fetches the head Oncologist.
    I tell him that in the last year I have lost the first tooth ever in my adult life, I have to get a root canal redone and the dentist has told me that I will need a bone implant to save another tooth. I tell him that while I have done everything by the book and even tried a drug trial, I have a horror of getting osteoporosis and that at the rate I'm losing bone density, be the end of this course I will be damaged beyond repair.
    She suggests Tamoxifen. He says it will drive my fibroid mad, it was huge. I say. take it out, its smaller now.
    The new plan.
    immediate visit to a gynecologist with a view to having another operation, this time to remove the fibroid. Get the teeth done. Stay on the Arimidex until June and keep taking the calcium. Then in june, switch to Tamoxifen and while it does damage the bones, it is not as hard on them.

    I go home and think about it. My plan. NEVER EVER take Amridex again. Fix my teeth, get the fibroid out. Maybe give Tamoxifen a go. Get a dexa scan every 3 months. If I lose bone density, give up Tamoxifen too and take my chances. The 2/3 % risk differential is not worth the osteoporosis. I have been on Arimidex for 14 months, I took 5 rounds of Palbocciclib and I had complete pathological response after just 3 of my 5 rounds of chemo. That must make my chances of recurrence even lower.

    I can only work with the information that I have been given. If there is another angle that would help me make the right decision I will gladly listen, I'm so worried about this it keps me up at nights.

  • Tamoxifen works differently to Anastrozole, it doesn’t affect bone density. I’m on it for that reason, still get the sweats etc but so far have ben tolerable. 

Reply Children
No Data