Hi Bluebella

I didn't experience of low mood while on tamoxifen but I see it can be a side effect of the drug. I would have a word with my oncologist/GP if I was experiencing your symptoms as I would not like to live like that. I'm sure there are things that can be done to help you. Take care x

Thank you for replying. I have decided to wait another few days, and if it doesn't lift I shall probably stop taking it. I can't live like this, especially not for just a 0.6% of a better outcome.

Hi there ...

I was the same as you .. o.k for a few weeks then wham ... I went from pretty tough cookie , to a bubbling wreck ... but just didn't know why ... I was crying over everything and anything ... it did wear off after a while and I managed nearly 2 years befor my already weak bones and body were wracked in pain .. and it was worse then not being here ... 

I did enquire and was told tamoxifen only gives us a 3% extra on expectancy  of comming back .. so for me, it was a no brainer, and gradually I've got stronger sinse stopping it ... but I did it very gradual .. took half for 2 weeks and a quarter for another two weeks , and had no side effects sinse ... 

Saying that everyone has to make their own mind up ... what's right for one isn't for another ... I weighed everything up before making that decisions ... 

Good luck ...  Chrissie x

Thank you so much for replying. I have heard that 3% quoted too. It's very naughty of specialists to talk in terms of how Tamoxifen can increase your chances by 40%, when what that *really* means in real terms is that it goes from 1.7% risk of reoccurance if taking Tamoxifen as opposed to 3% without Tamoxifen.

Did it make you feel horribly flat, too? x

Hi there ..

Yea I don't want to sway any one ... I always say find out the facts first and make your own choice ... 

But tamoxifen has so so many causing side effects ... I'm just pleased I made that decision .. no matter what ... it made my life unbearable ... and I have a high pain threshold... I coped well with everything else ..

I can't explain how it made me feel .. I'd had no warning of mood swings ...  and the pain built up over the two years , to were I could hardly move ... l had no life then anyway ... 

I wish they would do a lot more research into tamoxifen .. and get our story's... good and bad ... and work out if the side effects are worth just a small percent in reocorance...  but my full respect to those who have no or few side effects ... good luck in whatever you choose ... all I would say is I'm pleased I came off slowly ... Chrissie  ;  ))

I feel that Tamoxifen is used as a blanket treatment when oncologists only focus on the cancer. But, Tamoxifen can cause other serious issues such as heart disease and strokes.

It's so hard deciding x

Hi Chriss

It is great to have someone like you around (and a few others too), always ready to share a few words of advice and your experiences.  

I remember you replied to my post about tamoxifen a few months ago and that you came off tamoxifen slowly.  Have you got onto another hormone medicine, or have you stopped completely, free from HT?

Well, since I last posted and after having done my research and as others found out too, did Predict that shows less than 1%, I decided against taking tamoxifen.  I am back to my old self, enjoying my daily exercises, doing sports and being well again!  (My oncologist's answer to my question was whether or not I take the medicine, there is 50/50 chance of BC recurring... based on this, it is an easy decision for me to make.)

Let me know how you are doing and hopefully your arthritis is not causing you too much pain and grief?

Best wishes and big hugs xx

Hi Bluebella,

I have had 2 bouts of breast cancer. I had a lumpectomy first time followed by Tamoxifen for 1 year. I was then diagnosed with a second primary cancer and had a bilateral mastectomy before I changed over to Letrozole. I took Letrozole for 6 years and stopped taking it in July 2017. Like Chriss, I don't want to put anyone off taking these medications, as some people have no bother at all when taking them.

I found that, like Chriss, I cried at the slightest thing on Tamoxifen. My mood was also extremely low. I did have some problems with my joints, but I always had a tendency towards arthritis, so possibly couldn't blame it all on Tamoxifen. When I changed to Letrozole, my moods and crying improved considerably, but every joint in my body flared up. I also developed eye problems. I ended up having both of my knees replaced and had 5 operations on my eyes.

I didn't have radiotherapy, so I felt that I should continue with this type of treatment for whatever small advantage it might give me. So far, I am still here 11 years after my first diagnosis.

A cancer diagnosis can leave us with bad spells, such as you describe, but they do usually lift again. Are you having any other side-effects?

There are other tricks that the doctors have to reduce the effects of these medicines and, if these don't work, your oncologist can always change your treatment to something else. Maybe it's worth discussing your views with your oncologist/ breast care nurse, before you stop taking them altogether.

Please keep in touch and let us know what you decide to do. We are always here for you.

Kind regards,

Jolamine xx

Hi, first time posting on here. 

My wife is taking Tamoxifen. She has always been a really strong minded and willed person, but since taking these tablets she breaks down crying at the slightest of things. I know she has been through the mill, but even from diagnosis and her treatment she was so positive and strong minded. Since the tamoxifen this has changed things. 

Her mood is always up and down and no matter how hard I try I can't seem to help. If I mention that it's the tablets it seems to make things worse.

My wife had BC and had a mastectomy and her lymphoids removed, she had her fec - t chemo, then 15 rounds of radio. 

Personally I say to her she needs to tell her oncologist about the mood swings but she doesn't.

Can you please offer any advice as my wife says now that she can see in my face that she's upsetting me and again this makes her more upset. 

Hi there ..

I'd get her to read these threads ... she can see the pros and cons... and at least she will know she's not alone and if she understands it's not her fault having mood swings ... it may help her .. she needs to do her homework .. and it's up to her which way she goes ... though I have never regretted stopping it ... 

I think they need to do a lot more research into tamoxifen and other hormone blockers ... as this comes up very often on here .. you sound amazing and supportive... just know it's not you ... try not to take it personally... but let her read these for herself ... let us know how you go ... Chrissie....