Welcome to Cancer Chat, Aggie81.

I'm sorry to hear you had a bad experience with your cancer treatment and that now you're feeling even worse now that you stopped taking Tamoxifen.

This is something that probably many of our ladies here will be able to relate to so I hope some of them will pop here very soon to chat with you and offer advice. Until then try to go easy on yourself.

Also, I thought you might be interested in reading a few pages I found on our website about Tamoxifen and coping with the side effects of cancer drugs.

Also, feel free to give our nurses a call if you think speaking to them could help. Their lines are open Monday - Friday between 9 a.m - 5 p.m on 0808 800 4040.

Stay strong, Aggie81.

Best wishes,

Renata, Cancer Chat Moderator

Hi Aggie 81

im sorry to hear what you have gone through, I have gone and am still going through a hormonal nightmare!! 
 

I was 39 when diagnosed and after the conveyor belt of lumpectomy & radiotherapy I was prescribed tamoxifen for 5 years. After some horrific side affects, (crying for no reason, nausea, memory loss, dry skin, aches & pains) I also felt like lsomeone 40 years older and I certainly was not myself, but I stuck it out even though I had tantrums about it for the duration! 
when I reached my 5 years, I had no contact from anyone, so I phoned my gp to ask about stopping the drug. Not once did the gp or any support or drug information material say anything about coming off tamoxifen slowly. So I stopped! Omg! I'm sorry to say I have now spent 2 years having irregular extremely painful periods and still not back to feeling myself or having my brain capacity fully back in tact! My first 4 periods after stopping tamoxifen I thought I had gastric flu (nausea, cold sweats, upset stomach) and had the most excruciating pain in my stomach, back , bottom and I couldn't function on basic daily tasks. Finally went to my gp after I couldn't get off the floor and walk my dog, My gp told me all of those symptoms were to do with the hormonal changes. 
 

2 years on after stopping tamoxifen I still have many of the symptoms mentioned above but maybe slightly less on the flu symptoms. I'm now 45, I don't know if this will continue until I have the 'real' menapause (not the tamoxifen version) or at my age will I just sort of roll back & forth between menapause and 'normal' ? Who knows? . I never suffered any of these symptoms pre- tamoxifen. 
 

I certainly understand how you feel, it takes over your body & life at times. I'm sorry if my post is such a negative response, I do get  the feeling of being alone, not understood or supported and is often all too difficult to bare, made worse by raging hormones controlling your moods and how your body feels - yes I too feel about 90 and struggle with concentration & memory issues and often look a fool at work! 
There were no forum posts on this subject 2 years ago that I could find to help me, there needs to be more info out there for understanding the affects of this drug and how to wean yourself off it rather than going 'cold turkey'.

please stay strong, we can get through this by support and understanding of shared experiences- but I wouldn't wish this on anyone. 

I hope the effects don't last too long for you and you start to feel like yourself soon

I am sorry for all you have been through and thank you for sharing your journey with me.

It most certainly is quite a rollercoaster and the feeling of isolation makes things worse.

I stopped sharing my issues with friends and family because they simply think I make it sound worse than it is and they offer me little consolation if any.So I suffer alone and some days are so bad I don't go out at all.

They say you are a cancer patient for life and now I completely understand why.

All the best in the future.Stay safe.