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 Iām 70 so not in the age range that youāre 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, Iād 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 Iād had radiotherapy; she did try to persuade me to try another form of endocrine treatment but I believe itās not so much the drug but the removal of oestrogen thatās the problem so I said no; she did admit that endocrine treatment doesnāt 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 itās 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 itās 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 Iāve 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 Iām sorry that the side effects were so bad you had to give up on your treatment. Itās not an easy decision. You are definitely not the only one, there has been many threads this topic.
Iām in my 50s and struggle with side effects, Iād 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 Iāve 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 itās never an easy decision especially when so young.
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Sorry youāve had such horrid side effects. I am due to start now but wanting to aka more questions about my benefitā¦ itās so hard to know. I am reluctant. Do you feel youāre going to continue the tamoxifen ?
Ive been on Anastrozole for 4 months and had quite bad side effects or so i thought. The Onc has said to have 1 month break to be sure its the meds and not just me. Im glad of the rest though its early days. If symptoms disappear weāll re assess whatās best.
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I just turned 40 and stopped taking Tamoxifen after being on it for about 9 months. My risk of recurrence is low and the benefit of tamoxifen doesnāt seem to be worth the many side effects I was experiencing (fatigue, hot flashes, insomnia, joint pain, moodiness).
Iāve been off tam for about a month now, and I do feel a bit better, but Iāve always struggled with depression, anxiety, bad sleep, adhd, and low energy (even though Iām very active), so I canāt say āI feel great now!ā I donāt know what to do.
My internal medicine doc said she tells women every day that their breast cancer from many years ago is back and metastatic, so she doesnāt want me to take the decision lightly.
Of course Iām worried about recurrence, so Iām considering trying out a lower dose to see if the side effects are more manageable.
But, I have not found any studies about the long term effectiveness of tamoxifen treatment for women in our age range. Am I missing something?
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I am 62 so outwith your age range in your query and did a year of Tamoxifen (I would have carried on) but had to stop as I grew a polyp which they canāt remove due to stenosed cervix and didnāt want a hysterectomy. I changed to letrozole and side effects were really rough for me so spoke with oncologist. Predict benefit was under 1% at 15 years on HT and I got the ok with the oncologist to stop the AI as risks were outweighing benefits and I am mildly osteopenic too; so I stoppedā¦ my decision. I did feel marginally better knowing the Onco was almost agreeing with me (slight concern because I am very er positive I guess) and I will stick with my decision and I am just getting on with life. Occasionally thoughts pop into my head but are quickly thrown out again! Everyoneās cancer is so different its something only they can decide on xx
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I agree tigress re the removal of oestrogen being the cause. You did really well doing over 3 years - I only managed a year and a bit. I had a mastectomy so no radio offered. x
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Thank you @acantilados. Part of me wonders if Iāve done the right thing obviously but only time will tell. The important thing is to enjoy these SE-free days, however long they last. To ruin it all by stressing and feeling awful means I may as well have continued taking it. All the very best to you and your continued recovery and letās hope we both go on to live cancer free 
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Your words really resonated with me tigress and i think about them often when out walking. I have been off tablets 6 months now and have moved on with life and as you said I am enjoying the side effect free time and understand it was my choice ( with the ok from breast care team and oncologist). Only taking vitamin d currently which feels strange but I wanted to pop on to thank you for those words they help me greatly x
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Hi @acantilados thank you so much for your kind words. Weāre both a few months on from our big decisions and beginning to decompress from it all. I hope and expect for that to continue and as the months and years go by, the whole experience will fade into the background. Obviously we will need to be vigilant and routinely check ourselves for anything untoward but I see every reason for us to go forward with confidence that weāll be in that 70% (minimum) of women who have no recurrence. The biggest of big hugs to you.
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Hi Iāve just started Letrazole, itās only day 4 but Iām feeling worse than on Chemo.. I really hope this will pass, but my brain is already considering quittingā¦
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Hi all ive tried all hormone blockers anastrozole letrzole esstmestane and I cant toleratte any ive given them all a go and my quality of life is just inexistent so I decided while im here quality of life means soo much to me.
However its not a decision everyone can make and find it difficult to decide whether its the righy one for them. Id absolutely speak to your oncologist but also understand that they will always offer you something based on their medical research.
I wish there were more people who were open and honest about how difficult the side effects of these drugs can be.
Hope you ok and you come to a decision youāre happy with
Take care
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Hello @sim2 - so sorry to read you are struggling. May I ask what your side effects are? X
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Please speak to your team for help with side effects. Many can be managed with medication. I know taking more medication is annoying. I take 6 tablets for my side effects so I can make the 5 years. Not all plain sailing. Iām hoping to start something new for my hot flushes soon.
Many doctors say the symptoms will settle after a few months, so try to stick with it, if you can. For me they didnāt 
You are entitled to a menopause clinic referral with a cancer diagnosis if your symptoms are menopause related. Unfortunately the NHS wait time is quite long. I paid privately at first and then spoke to them on the NHS for my follow up some months later.
I started this thread which I update as required.
Also try to call the BCN nurses on 0808 800 6000 who may be able to offer help with your side effects.
This is a popular thread as well. Many finding different brands work better for them
Take care and keep sharing.
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Thank you
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