I’ve not logged on for a while, but just found this thread. Had a small lobular cancer right breast in 2008, when I was 54. Lumpectomy, radiotherapy and tamoxifen. All was well for 2 years, when I started persistent post menopausal bleeding. Investigations pointed to tamoxifen, so with the consultant’s agreement, I stopped it. 2019, bilateral cancer, 46mm lobular in right breast, 26mm ductal in left, one lymph node affected. Had mastectomy on recurrent side, lumpectomy followed by radiotherapy to breast and lymph nodes on the other side. I was challenged more than once by medics as to why I had stopped tamoxifen. But I couldn’t just have carried on bleeding like that! I started letrozole in October 2019 and all seemed well. I’ve always had twinges of pain in left knee since having an accident when I was 18. By January 2020, the pain was severe. Osteoarthritis was diagnosed and I am having a knee replacement next week. By August 2020 I was also having severe pain in my right hip, which had never been a problem. Osteoarthritis was also diagnosed in that, and I am in the process of referrals. In November it dawned on me that these problems had only risen since starting letrozole. I had a telephone appointment with oncologist and agreed to have a break to see if it made a difference. By beginning of January I couldn’t in all honesty say I’d noticed much difference, so I restarted it. Spoke to oncologist a week ago and she was pleased I’d restarted and said I should stay on it for 10 years. But now I’ve realised the pain in my hip has got much worse since restarting letrozole. Statistically, from the Predict tool, letrozole offers me a 6% benefit. But like others of you, I can’t face the thought of living like this, with constant pain, for another 9 years into my late 70s. I used to enjoy 5-6 mile walks, now I can barely manage 1 mile, and that’s with sticks and strong painkillers. I wake up at night every time I turn over. So yesterday I stopped it again. I’m going to get through my knee surgery, assess my hip (which may improve once my knee is properly aligned) and think again about the risk/benefit balance. Incidentally my blood pressure was high last week. Already that has come down, and I see high BP can also be a side effect of letrozole. But it’s too early to say, and I was a bit anxious last week (which is not normally me). I wouldn’t want to discourage anyone from taking it, but just to share my experience. After having a recurrence, it is a double whammy when thinking about stopping it.
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