You need to check what grade u are as I thought I was low med grade risk to then find out from oncologist I was high risk,
This changed my decision to take hormone therapy, as low med risk had clinical trials and it hadn’t concluded that Tamoxafin etc
Would be that beneficial but high risk different story. Hope that helps to know for you.
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I’m 41 and was dreading staring tamoxifen.
I started taking it in May. After six weeks on it, I had no negative side effects - only positive ones - loads of energy (I was making sure I got lots of exercise and was eating well) and my libido went super high!
I introduced zoladex injections to suppress my ovaries after the six weeks and only then I started getting night sweats and hot flushes. They are really annoying but it’s totally manageable. The skin on my hips got a little bit dry but Moogoo Full Cream has sorted that out. So far, these are the worst of my side effects and they could be down to the zoladex injections.
I’m so sorry to hear about your mother. I believe those serious side effects are rare but absolutely worth talking to your oncologist about your concerns due to family history.
So far for me, the fear was definitely worse than the reality. I hope it’s the same for you.
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Hi @Lulu41 thank you for your reply. It’s good to hear some positive feedback. I guess we’re all different so it’s a case of seeing how it goes I suppose 
Hi. For background I did not approve taking Tamoxifen when I first had breast cancer in 2020, because it is not a guarantee that the cancer will not return. A lot of people have recurrences even whilst taking the hormone blockers. I had a small local recurrence this year, and have had further surgery. I tried one of the 20mg Tamoxifen and was very very ill for a week – I have bad eczema and my skin was burning like acid had been poured over me. I told Oncology about this and they were happy for me not to take it and support my decision not to have further treatment.
You have the right to choose / refuse any treatment which you do not consider to be acceptable.
There is an NHS web page called ‘Do I have the right to refuse treatment’ which you can look at. The key part of the NHS link on the web is ‘your decision must not be due to pressure by healthcare professionals, friends or family.’
At the end of the day it is your decision and you have to do the right thing for you given that Tamoxifen in not a guarantee that the cancer will not return.
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Thanks for your insight @angrylady. It’s hard to remember that we have choice sometimes when we’re on that treatment pathway.
Thank you @loobers - I understand and I know it is very hard under these circumstances. My heart goes out to you and anyone else navigating these difficult decisions. I hope you are receiving the best support.
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Hi everyone,
We often hear from people who are worried about taking hormone therapy as part of their breast cancer treatment.
Like any drug, tamoxifen can cause side effects. Everyone reacts differently to drugs. Some people will have more side effects than others, while others don’t experience any side effects at all.
Although hormone therapies offer benefit to many people and can reduce their risk of their breast cancer coming back in the future, some do choose not to take them or stop taking them because of the side effects they experience.
If you have any specific questions about hormone therapy or managing side effects please do post them in the Ask Our Nurses area of the forum, or send them to us via our Ask Our Nurses web page or you can call our helpline team who have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message and we will call you back when we next open.
Best wishes
Catherine
Breast Care Nurse
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This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.
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Hello, iam
In similar phase. stage one double mastectomy and now facing tamoxifen and I really feel like I do NOT want it . I feel they just prescribe it to anyone everyone
My mother and gram died of strokes !!
Hi @chiara it’s hard isn’t it. I take it but it’s a constant worry in the back of my mind. The ongoing hormone therapy can cause a lot of issues but some people think it’s just taking a pill!
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I started tamoxifen two weeks ago and feel fine on it so far. Remember that if you struggle, it’s a tablet so you can stop taking it to see if it’s causing any side effects you’re experiencing. If it is and they are impacting your quality of life there are alternatives drugs you can try.
I don’t view it as just popping a pill, I see it as a powerful drug with potential side effects (the rarer ones clearly I’d like to avoid!). But for balance I do see it as something I’m lucky to be able to try, an insurance policy to try to ensure I live a long life and see my kids grow up. According to the Predict it gives me up to an extra 14% chance of being alive in 10 years (more than the chemo I’ve had). It might not work, but it improves your chances for lots of women. So I’d suggest it’s worth giving it a go. X
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Yes it’s very daunting and even if year one two or three …are side effect free what happens year four five etc taking a pill every day doesn’t give me peace it s more stress and stress lack of sleep lack of quality of life lead to disease 
I agree - quality of life is important too. It’s a lot to think about.
Hi Lulu, I found this post really useful to read. I am 42 and have been on Tamoxifen for 9 weeks and have had minimal side effects. I had my first Zoladex injection 2 weeks ago. I was wondering how long it took for the side effects to come on. Also are you still finding in manageable. I will take any tips.
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Hi @eb13 it’s good to hear that you’re having minimal side effects from the Tamoxifen. I haven’t had zoladex injections so I can’t give you any tips regarding that. I think side effects can take a while to build up but everyone’s experience is different. Make sure you take time out to look after yourself
So sorry to hear you’re also going through this. Brace yourself for a long message! Feel free to message me directly if you want to chat or we can arrange a call.
I think I started to get hot flushes and night sweats about 1 month - 6 weeks after my first zoladex. I had some hair thinning and a little bit of dry skin on my hips after a few months but nothing noticeable to anyone but myself. These are the things that I tried to help and my comments on their success- I guess it is a case of finding out what’s right for you. I will add that I have always been a rubbish sleeper so if you do get night sweats you might find that you don’t wake up or drift back to sleep with no issues. I have an overactive brain in the wee hours so it’s a bit harder for me than the average population.
Hair thinning - this settled and no one else would have noticed. My hair is really thick and I actually prefer it now as it’s a bit more tame! My oncologist said if I was concerned I could see a dermatologist.
Dry skin - totally settled down. I use moo goo full cream shower gel and moisturiser. I find that moisturising my skin in the shower when it’s wet has made a huge difference. I imagine E45 would be just as good and a cheaper option but I like the smell of Moo goo and think I deserve nice skin care!
Hot Flushes/night sweats - I’ve tried so many things! Any supplements I would run by your oncologist/breast cancer nurse before taking.
Sage tablets - lots of people find this helps but it didn’t make a difference for me. I was taking 3 times a day on the suggestion of my breast cancer nurse. I phased it out as it was super expensive and no noticeable benefit.
Increasing Soy in my diet (also suggested by my breast cancer nurse - didn’t make much difference but I still include in my diet as easily incorporated)
Chillow Pillow and mattress topper - I was very resistant to this but the pillow is really amazing. I don’t like falling asleep on it as it’s too cold but I pull it out when I wake up having a hot moment and it feels so lovely. I had the topper in the summer - at the foot of my bed and I would grab it if needed but I haven’t needed it in the cooler months.
Bed Linen - having really good quality cotton (best you can afford) really makes a difference. And a light duvet.
Wearing layers in the day time - I’m a bit sad I can’t wear chunky knitwear or polo necks any more but there you go! Bamboo PJs (Shorts and vest) are good. I can’t go nekked cos I get too cold after a sweat.
Hand held fan - a god send to keep in your handbag. Also I have a fan pointed at me at night but not needed in the colder months. It has a remote control which is super helpful as I get hot then freezing.
Evian water spray in a can - quite lovely and feels a bit decadent!
I’ve noticed that when I am stressed, that’s when I have a hard time going back to sleep so if you are struggling with the sweats do whatever you can to reduce that. Exercise has been a lifesaver for me. I like slamming medicine balls into the ground and letting off some steam! My job is pretty stressful so it’s much needed! I don’t have trouble drifting off but if you do - listen to a yoga nidra - they are magical. Someone also gave me iMagT magnesium powder - two scoops before bedtime in a drink definitely helps your body relax.
I’m also on a prescription of melatonin - not sure it’s doing anything but will persist.
I tried medical acupuncture but it didn’t really work for me. Some people swear by acupuncture.
All of the above might sound overwhelming but it’s just stuff I have tried and tested because I’m determined to improve my sleep but it may not be an issue for you at all. My sleep is still rubbish but it is absolutely still manageable and I’ve always been a light sleeper so this side effect was always going to impact me! There are more medical routes I could go down eg. some low level antidepressants can reduce flushing but I’m not so desperate yet that I need to explore those.
I can honestly say that the best things for me have been reducing stress and anxiety and good quality cotton bed linen and exercise.
When I started zoladex I was terrified and thought I would abandon it at some stage but I think I’ve had 11 injections so far and I haven’t needed to consider giving it up yet so I’m happy to keep going for the extra protection it gives me. My main worry was that I would feel like a different person - in a negative way and I don’t - I’m pleased to say I still feel like me. Maybe even stronger as I’m getting toned in the gym. I’m also treating myself to good skincare and have changed up my make up - using lighter and more moisturising products. I’m getting nice comments about my skin which makes me feel good. Sounds vain but I think I was super concerned zoladex would turn me into an old lady so I’m reassured that it hasn’t!
Good luck and I’m here if you want to talk more. xx
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Thank you so so much for replying
This was so useful for me to read. I have been getting into exercise as well and am trying to reduce stress too ( although that’s not the easiest).
Hearing your experience has made me feel much more positive about Zoladex. I am definitely going to make a note if all the tips you have suggested. I was also nervous about not feeling like me. I might take you up on the offer to message privately. Can I ask if you areon Tamoxifen as well or am aramatose inhibitor!
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I hear you about it being hard to reduce stress, especially early on in treatment. So much to process. At least your brain gets a moment of peace when you’re exercising and focusing outwards. My brain is my own worst enemy.
I’m taking Tamoxifen. The plan is to switch me to an AI at some point. I’m very apprehensive as that sounds hardcore but my experience with endocrine therapy so far is that I should give it a try. My oncologist is happy with me going back to just tamoxifen so for me the zoladex and then the AI are basically there to give me bonus protection. It’s helpful for me to know that and probably helps me stick with the plan. Everyone is different of course, but that’s my situation.
Please do message any time x
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