Hi all
Its probably been posted a million times but has anyone in their 30s/40s given up on hormone therapy.
Ive tried anastrozole and letrzole and have been so bad on both unbearable side effects.
Id like to know if im not the only one?
Thank you 
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Hi @smallandmighty I’m 70 so not in the age range that you’re asking about however, last Monday I had a call with the head of the oncology department about stopping Letrozole after three and a bit years due to the increase in cholesterol and the SE I get on statins. Anyway, she agreed I could give up as my Predict scores are very good, but I asked her how many people come to her and her team with the same discussion. She said quite a few and expressly said that many women in the 40s and 50s are more inclined to elect not to take endocrine treatment at all. In fact, we had a discussion about the difference between my generation, which broadly tends to follow medical advice (obviously wildly generalising here) and your generation which is far more likely to self-advocate and adopt a unilateral position. So, anecdotally, I’d say there are quite a few, hopefully some will be along to give you their experience shortly. A few final points, she was ok with me giving up Letrozole because I’d had radiotherapy; she did try to persuade me to try another form of endocrine treatment but I believe it’s not so much the drug but the removal of oestrogen that’s the problem so I said no; she did admit that endocrine treatment doesn’t prevent metastases in all cases and, finally, she said that if I did end up with metastases, not to regret the decision I made as it is the right decision for my circumstances at the time. I do think it’s important to have the discussion with your oncologist before stopping and I hope that you have the opportunity to talk things through in partnership with your oncologist. .
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Yes, I think there is a longer running thread about it but I think it’s good to post about it to perhaps get fresh perspectives.
I was 46 at diagnosis and my treatment plan included tamoxifen for 10 years, and ovarian suppression by way of leuprorelin (Prostap) injections for 5. I started in August and the side effects were horrendous. The hot flushes and the night sweats were horrible, but it was the permanent urinary tract symptoms that made me utterly miserable. I also felt so depressed and anxious.
I stopped the injections and continued with tamoxifen alone. The symptoms have drastically improved. To me, the effects on my quality of life was not worth the small reduction in recurrence risk. The fact that I can still tolerate the tamoxifen means that I am hopefully still getting some benefit.
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Ive only been taking Anastrozole for a few months (67yrs) and had very few side effects until this week. Ive been ridiculously slow at even the lightest exercise and had aura headaches so took my blood pressure. It was really high and has mainly stayed high. Im blaming Anastrozole as I’ve always had excellent BP. I emailed bcn on Friday and just waiting for her to get back to me hopefully on Monday. I want to stop them immediately really.
Good luck with your decision x
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Hi I’m sorry that the side effects were so bad you had to give up on your treatment. It’s not an easy decision. You are definitely not the only one, there has been many threads this topic.
I’m in my 50s and struggle with side effects, I’d started menopause before my diagnosis but the treatment has amplified any side effects. I had a referral to a menopause specialist which has helped a bit more, I paid privately at first and then NHS which is supposed to be every 3 months but more like 6 months between appointments. This is problematic, as I’ve stopped one medication and now have to wait until 6 months to discuss more options. I have other medical issues and medication that interact with some options so it complicates it a bit more.
You may benefit from looking at https://menopauseandcancer.org/ I was lucky enough to meet Dani Binnington at a local charity menopause day. They can help with menopause appointments as well.
You might find some help and support here
- Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
Hope this helps.
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You are definitely not the only one. I have given up on them twice now. First time, I was 38 and the side effects became unbearable very quickly. The second time, I was 41 and the same. You have to do what you know is best for you. Here if you want to talk though as it’s never an easy decision especially when so young.
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