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
  • has anyone got bone pain in the shoulders through anastrozole tia

  • When I was on Anastrozole every muscle and bone in my body hurt....

  • I love you "girling up"!!!!  And just collapse and rest when you have to.  Thank you for sharing YOUR trek.  I had monthly 3 day migraines for 40 years, before migraine shots.  So far nothing has hurt that much and I love to be lazy (with an excuse).  you obviously have humor and that is beautiful.  I just met an engineer who studied at Birmingham University so I am kind of feeling the UK Many hugs, and loving thoughts to you and your family!!!!

  • thanks, if you ever vist the UK, make sure to check out Birmingham, it has been radically rebuilt, and has more miles of canals than Venice- if you get to see a tv show called Peaky Blinders its based on the area around Birmingham, its got a fantastic art gallery, jaw dropping modern architecture, and a beautiful botanic garden. the bit I get to go to for the centre is in the rough end of town, when I went in summer, there was a police chase, and a car pulled over with what looked like armed police, which we dont usually have over here...couldnt wait to get back to sleepy worcestershire.

     

  • Thank you, Peaky Blinders is my favorite series, so I have more of a feel.  I really think being interested in life is more than half the battle.  Your daughter is engaged, just telling people the stories of our life.  My mother is 95 living on a ranch in Idaho, I did my chemotherapy there, a fabulous hospital and cancer center.  Then I had to deal with a property in Blythe, CA, with temperatures between 115-125 degrees everyday ( good air conditioning).  So, I had my oncologist in Raleigh, North Carolina, one in Idaho and one in Palm Sorings, CA.  A childhood friend is in his 28th year in a CA prison, so my visits did not stop just because I was bald.  Now I have really unbelievably beautiful thick grey hair.

    I worked in a hospital years ago, supervisor of admitting.  One wife, in her 30's, dying, small children, would use her hospital stays as a romantic time with her husband, complete with a lovely negligee.  Then a 40'ish man with twin girls, one on each knee, he in a wheelchair, would roll into my office to be checked in.  He was so sad to be leaving, but so brave, I think that really imprinted me.  My daughters were with me when I had a breast removed and they just kept me laughing.  Your children and mine are being taught by us how to LIVE!!!! 

  • wow, thanks for that- we do get imprinted with how to survive dont we, hope I have passed that onto our kids.  My dad was 100% war disabled, because he picked up tb and skin cancer serving in the RAF in India during WW2, and even worse, because he was a skilled radio communications worker, they wouldnt demobilise him at the end of the War, they made him and others like him in telecoms stay over there until late 1948 because of the war of Partition between India and what went on to become Pakistan, and the decline of the British Empire "East of Suez"- anyways, it cost him a kidney, his hip joint had to be patched up with  his own bone out of his leg, and one leg was shorter than the other, I got bullied at school due to his disabilities. But he taught me how to get on with life, as did my mum, he spent two years in hospital and she visited by coach every weekend for two years, and saved enough from her secretarial job to buy a house for them in London, as there was no prospect of getting council property to rent.  She said every little girl should learn a four letter word - not rude, the word she meant was COPE she taught me to cope, she coped, he coped, we all did, they had a great life together, 64 years married when she died after suffering a stroke that robbed us of how she really was, as she got vascular dementia following that. Dad went on for 4 years after her, moving to residential care a mile from us, just up the road, until he fell and later went into delirium then kidney failure.  He was 94.  I was worried about telling his big sister (97) in AUstralia, but found out she had died five days before him over there- after having a big family party in her care home, with treats for the great grandkids and drinks for the adults, when they all left, she slipped away.  just like dad.  Lives well lived whatever was thrown at them. thats how I hope my family will think of me whenthe time comes. so next week. stuff thoughts of work, Im off to get my hair highlighted!! have a great weekend.x

  • 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

  • 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.

  • 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)

  • 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. 

  • 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?

  • 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. 

Reply
  • 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. 

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