Do muscle aches and fatigue improve after stopping anastrazole after 5 years?

[judyboots]

I have just completed 5 years of anastrazole after treatment.

My oncologist says it would be quite reasonable to stop now but equally as one sentinel gland showed tiny amounts of invasive cells her recommendation is to continue for10!

This wasnt terribly helpful ! From what I have read 7 years is as effective as ten and the increased protection would be tiny anyway for another 2 years.

If I thought I would have less random pain and fatigue flare ups Id probably stop now...but its still scary. Kust thinking of coming off for a few months and seeing how I feel.

Has anyone felt noticeably better once they have stopped after years?

Thank you

[Happyrosie]

I’ll give my experience.Firstly, the seven and ten year statistics only apply if your lump was 50 cm or less, for ladies in their (I think) seventies and above. For bigger cancers as mine was there are no statistics.

You were given five years so your experience is different to mine.

I already had a bit of arthritis before the cancer. My joint pains were markedly worse on anastrazole. I was supposed to do ten years on this. After about four years I switched to another similar tablet and then again to the third one. No real change.

I stopped after seven years of this treatment and the pains were better, but still bad. But my sleep was very much improved. I talked it over with the oncologist and she said that she would prefer me to stay on for the full ten but if I felt my enjoyment of life was more important than life expectancy then I could stop. So I did. Four months on I’m still alive (!).

[judyboots in reply to Happyrosie]

Thanks for your input....

[waveylines in reply to judyboots]

I switched from Letrozole to exmastane due to the psins as you describe. I stuck it for 7 years but then it got too much so have stopped. I had a large tumour at diagnosis. My Oncologist said for me the difference between 5 & 10 years is 5%. Everyone is different. Have you had a dexa bone scan to check your bone density. Is your vit D level over or around the 100 matk. GP can check this and refer you for dexa bone scan. It could be your bone density has been affected.

I found I was stiff and felt like an old lady on the examastane. I stopped tskeing it 4 months ago. I am beginning to feel better. Onc said it would be at least three months before I felt an improvement. Having no oestrogen in my body for seven years has given me a vaginal prolapse (needs surgery) and bowel Incontinence. My onc also pointed its also anout quality of life. Mine was rubbish before being on it sooo long. I wait to see if the bowel incontince improves. My thinking is clearer (now recent research has shown it can affect higher functional skill). So I will take my chances. Everything has its price!!

[Chick44nzrn in reply to Happyrosie]

hello Happyrosie, how are you in sorting out the puzzles of side effects ? I haven’t much to enlighten you but have found after 4 years of Letrozole taking it obsessively each day , the price for a measure of optimism , is painful joint problems , hips and shoulders , (rt shoulder truly a Test of endurance !) but then I can drive , walk locally , no marathons , talk to my daughters and grandchildren ( can’t lift the small ones) cook most things but not big Sunday joints., attend concerts , travel ( light!), do courses on line , in mental health , my former career , and look after my flat ok !! Just returned from a 2 day break in Milan , with my youngest daughter. Most days I have an afternoon rest as I ache and a rest helps . It’s a challenge for sure , and hard to accept but the positives do outweigh the negatives . The tumour in my right breast was very large stage 3., and so in the balance of everything I’m thankful to be around for my family of 4 plus 10 small grandchildren ! Wishing you all the best and hope you are confident as possible with your decision , and stay as well as possible!

Warm wishes

Denise

[Happyrosie in reply to Chick44nzrn]

hello Denise. It’s so kind of you to contact me,

My joint pains are quite bad, and I saw a consultant rheumatologist last year who confirmed I have osteoarthritis. Sometimes I think I won’t be able to get out of bed - but I do! Most mornings I do ten minutes of Joe Wicks for Seniors on utube. I cover nearly ten thousand paces a day. I have two voluntary jobs, one of which is sorting food donations for the local foodbank and that can be strenuous!

Heavy shopping is delivered, and for fresh fruit veg and protein I visit local shops most days, rain or shine.

Like you I rest for ninety minutes in the afternoon.

Yes the positives outweigh the negatives. My tumour was 90 mm but stage one and NO metastases. I can quite get used to the fact of being one-breasted, when I shower and then out on my bra with its prosthesis I can’t miss it, sadly. But it doesn’t normally impinge on my mind.

Just as waveylines has posted, everything has its price!

Thanks again for your support, it means a lot.