Tamoxifen

I’m really pleased you have been relatively ok taking them . I too have very blurry eyes from chemo and they constantly stream so I’m worried Tamoxifen will make them worse.

I’ve always been a pretty good sleeper. I can’t physically function without a good nights sleep and I know Tamoxifen can cause sleep problems . I’m glad you’re sleep is improving . 
I need to get back to work after radiotherapy and don’t want to feel tired all the time.

That’s great news about your sister in law . I know someone who refused them and she’s 5year cancer free. The predict tool gives me 12.7% added benefit if I take them ,  my tumour was 9.5cm so I suppose it is beneficial for me to take them . If it was only 4 or 5 % I wouldn’t take them . 

I took tamoxifen for 5 years problem free . Decided to come off them 2 years ago … big mistake !  I wish I’d stayed on them for another 5 years . I was diagnosed last Sept with new oestrogen related cancer and I honestly believe it wouldn’t have happened if I’d carried on taking them . I finish treatment being surgery / chemotherapy and radiotherapy on Friday and Am taking anastrole  for hopefully the next 10 years . No hesitation here ! 

I’m so sorry you were diagnosed with another cancer , I hope you are doing well after your treatment. I have been told I will be on them for ten years . I have read about lots of people that get  another cancer or mets after stopping them   So I know it is important to take them .  Wishing you all the best .

I was more worried about hormone therapy than anything else too. I opted to go into a medical menopause and take an aromatase inhibiter rather than tamoxifen so just wanted to say that there are a lot of options out there if you don't get on with tamoxifen.

I want the best chance I can get of the cancer not coming back so put up with the joint pain and early menopause. I thought that I'd be going into menopause in the next few years or so anyway so I may as well take the medicine and help prevent recurrence.

I have found that everything has become quite manageable. You get used to how you're feeling, things settle down and you carry on with life.

I am loving life again, I just have a bit less energy than I did before so need to pace myself. That's not necessarily a bad thing, I was on the go the entire time before cancer. 

Why don't you try it for 6 months and see how you feel after that?

My menopause was intense as it was a zoladex implant during chemo to switch off my ovaries When it came to starting exemestane, I decided to start them every 2nd day for a month to help my body adjust more.

Hi - I have blurry vision after chemo, but it was worse whilst going through chemo. I saw the optician after 3 months as my oncologist advised 3 months to let all the inflammation settle down. Apparently the chemo fatigue exaggerates any actual change in vision. She felt my change in distance vision was purely down to fatigue, and I must admit it is more likely in the evenings when I am always tired. My near vision has only changed slightly, though its very noticeable to me and I was expecting. huge prescription change. Again tiredness and evening light make my vision worse. If your vision is too blurry to drive, maybe you could go to the optician to be checked out sooner? 

Yes that is a big % difference and will be quite beneficial to you. Looks like it will be trial and error see how you get on and look at other options if it’s not for you. Xx

I’m glad you are managing well on in the aromatiase inhibitor . It’s definitely worth thinking about other options . It’s such a difficult choice as I know Tamoxifen protects the bones which is a bonus but the risk of uterine cancer worries me as I already have thickening of the uterine lining , whereas the aromatise inhibitors, weaken bones , I know they offer Bisphosphonates to strengthen them but I also don’t want those due to risk of osteocronosis   of the jaw . Why’s everything so bloody difficult. Maybe I’m overthinking everything, wish I could just be brave and make a decision. It’s keeping me awake at night .

It is hard. For me, it was a no-brainer as when I was given the choice of tamoxifen or menopause & AI I asked which had the better outcome and for me, the menopause & AI meant it was less likely to come back. I was running a few days a week and my main activities are all strength building so I wasn't overly worried about weak bones - I'm pretty sure I have a good base. I am on the bisphosphonate infusions too which also help prevent cancer coming back in your bones, so a double affect. I was worried about side affects, but haven't had any. I even had to have a root canal 2 months before my 2nd infusion - and after we cleared it with the oncologist (it's fine as long as you leave 2 months either side), it was fine and I have had zero issues. I had decent teeth, though chemo isn't good for them. You need to avoid tooth extractions but root canals are ok - it was my first one! Necrosis of the jaw is extremely rare, as is the other scary side effect - broken femur bone! If you read the side effects of paracetamol, you'd never take them.

Hi Miss K I started taking tamoxifen in January 2022 my side effect where at Frist joint pain was normally first thing in the morning when I got up felt quite stiff but once I got moving it got better. I also had hot sweats it would come on more at night when I was in bed and disturbed sleep I was a solid sleeper before also had vaginal dryness but all my symptoms have improved now I do still do experience hot sweats and sleeping problem. Hope that helps 

Take care 

Tcookie87