Tamoxifen

Hi Missi 

Sorry can’t offer any advice, but I’m same as you I haven’t got that far but I’m already questioning whether to take them or not. 1 the risks and side effects 2 on the nhs predict tool there really was not much difference in me taking them or not. So I am still pondering the question myself and I’ll have a discussion with consultant when the time comes xx

Thankyou pocket rocket for your reply. It really is a worry. My tumour was large and 2 positive nodes grade 2 stage 3 so I know it’s pretty important for me to take them  . If only we had a crystal ball . 

I get where you are coming from, we sit down with doctors and told  to take this and that and at the end of the day it is us which has to make the choice.do you take this drug for years and feel tired and some times groggy which i do. The risk of the other side effects you are supposed to live with. Everybody's different with stories of drugs and you will have to see for yourself, maybe try for 30 days.I recently had bad covid and stopped this drug to help my body recover but started again and yes i am running at 80% capacity again but is it working in the background to keep cancer at bay ? Kind regards   

I too was worried about side effects and to be honest taking it every day for next 5 years as I have issues swallowing pills. Its been 10 months now. In the beginning, I did suffer hot flushes, swollen ankles and tiredness. I felt nauseous but switched taking it from morning to evening and it was better. Now I do have achy fingers and joint ache. I put my legs up in an evening to alleviate the swelling but I'm ok so just plodding on. Do take a note of the brand you are on. Many find the brand and the subsequent fillers play a part. Luckily the one I was given seems to be OK so now my pharmacist is aware and I get it put on prescription.  There is also a separate thread on meds which may help you here

https://community.macmillan.org.uk/cancer_types/chat-breast-cancer/f/questions-about-diagnosis-and-treatment/208210/oestrogen-reducing-medications#1735375

I know, it’s really difficult , they just put them in my bag with anti sickness meds after my last chemo, no discussion with oncologist or anything, I have lots of concerns and need to speak to someone. I haven’t been impressed with Oncology tbh , I know they are busy but only spoke to me twice at the very beginning of my chemo.  and you’re right I should give it a go . I know I need to .Hope you are feeling better after having covid .

OMG I thought i was the only one!  Exactly the same feelings as yourself.  I got my pack last week, still in the box - until today!  I've just taken one and I am absolutely dreading the next 5 years.  5 YEARS!  I've been weighing up the pros and cons - they got rid of the Grade 1 cancer following a lumpectomy, I'm already peri-menopausal with all the horrid symptoms that entails, including dry eye, achy joints, tiredness - do i really need this??   I'm due 5 days radiotherapy in a few weeks.  Just like you, more scared of this pill than anything else.  I tried to explain my worries to the oncologist when she was prescribing these, but she just didn't really get it.  They want you take it as if there is no other option.  I guess sometimes you just have to imagine there are people out there in worse situations. Weighing up, i guess i'd rather not have the cancer back.  

Thankyou I will definitely take a note of the brand . I have to have them for 10 years maybe changing later to Letrozole after menopause.

Im already having hot flushes due to chemo , they aren’t much fun. I will take a look on the thread see if there are any positive stories.

I Agree , don’t want the cancer back either . Just want want whatever time I’ve got left to be at least a bit enjoyable without feeling rotten and miserable.I’ve got to have 3 weeks of radiotherapy soon , I’m only just recovering from chemo.  It’s never ending . I really hope you feel ok now you’ve taken the plunge and started taking them .I’m going to have to pull my big girl pants up and  take the plunge too. 

Hi 

I felt exactly the same and when I was given them I waited a week, then got covid so put off starting them until I felt better. I have just done a month and I don't really feel any major difference..... tired last couple of days but that could be because of work etc.

In the first week I was boiling hot and woke up to find my hair wet through in the night......this hasn't happened in the last week. I was really hot before I started with all this and thought it can't get much worse!!!!  My joints have been ok, I'm achy but I try and walk and keep active every day.

The main concern for me was not sleeping, I'm not a good sleeper and had some horrible  nights during chemo when I was loaded with steroids. I didn't feel staff really bothered about this and they were very reluctant to give me anything. Sleep deprivation had a huge impact on how I was feeling and able to function. The last week I seemed to have settled a bit more, it's late getting to sleep but I am managing to stay asleep rather than waking after an hour. 

My eye sight is still blurred, told this was due to chemo and not to get a test for at least six months after finishing but I do struggle at minute. 

Hope you are able to make the best decision available for you, my mindset was very much I will give it a try up until my next apppintment in july and if I can't cope with it I will ask for an alternative or to stop. 

Best wishes xxx

Yes if only, all you can do is weigh up the pros and cons, have a look at the nhs predict tool, the choice is always yours. My sis in law is now 9 years cancer free and she refused them due to the other risks of cancers ect, which is my worry rather than the actual side effects. Good luck in what ever you decide.  You could always speak with the BCN or Macmillian for advice. Xx