Hi [@Lizzy.flg]‍ 

I was also supposed to start on Tamoxifen last year, I already suffered with bad sleepless nights and depression so taking a tablet that would increase all that wasn't high on my list. I did try it for a few weeks, but that was it... I am 46 and haven't shown any sign of menopause yet - although before I was diagnosed with Cancer I did think I was peri-menopause, but it seems it was just either cancer or a funny few months!

I was in the mind frame of, yes it might decrease the chances long term, but being so susceptible to side effects from drugs I just didn't want to feel any worse. I spoke to my oncologist about refusing radiotherapy and also not taking Tamoxifen, the Tamoxifen they were fine about me not taking it, the radiotherapy was bit more of a stumbling block but they have of course respected my wishes and I have not had it.

As long as you have all the data and spoken it through with those that have the information it is down to you and how you feel in the long run. These drugs have been used for years and obviously proven to help reduce the percentage of recurrence, the doctors have probably told you this percentage and with that data it is up to you. I don't recommend anyone to do what I have done and not bother with follow up treatment, but it was right for me.

I hope you find what is best for you and helps you the most.

Hi thanks for that advice, I haven't been given the probability of reaccurance or had any discussions about taking Tamoxifen, the hospital are having a multi disciplinary meeting tomorrow to discuss my case, I can't believe I'm the only unlucky person to have so many side effects on this drug. 

Hi [@Lizzy.flg]‍ 

That's unfortunate you have not been given that information, I found it really useful.

Tamoxifen does seem to be a well talked about topic on here with lots having issues.

That doesn't sound good if the hospital is having a disciplinary meeting...

Hello,

I have just been diagnosed with recurrent breast cancer.  I was first diagnosed Dec2013 and from 2014 I took tamoxifen for 3 years. (meant to take it for 5) The side effects, for me were horrid and the moment I stopped taking the drug I became me again and felt so much happier.  However now that the cancer has returned I do wonder if I was still taking the wretched drug now, would it not have come back?  I guess that is something that I will never know?  

Sorry to hear you have had a reoccurrence, that's rubbish, did you get given a probability of its possible return if you stopped taking tamoxifen ? Just trying to understand my options. Thanks 

Hi,

No, I was given no indication, in fact my consultant referred to my cancer as pink and fluffy, even though I had a mastectomy and a 5.5 cm total tumour.  I guess her bedside manner needed work!

I have noticed that statistics for recurrence tend to relate to 5 or 10 years post diagnosis survival and there are so many factors that contribute to it, that it is difficult to say whether taking or not taking tamoxifen is a factor?  

I have to say that I didn't feel I got much help regarding the tamoxifen side affects back then - I was told taking sage would help with night sweats (which it didn't) and then offered anti anxiety pills (only some work in combination with tamoxifen) which I refused as I didn't want to travel that path.

Whatever medications I will have to take now, I am seriously thinking of trying to manage the side affects/anxiety with marijuana (making a tea not smoking it)

I hope your medical team can get you sorted and I really feel for you and your struggle with tamoifen

The nurse suggested I start taking sage for the night sweats & I was offered anti depressants for my low mood, but after coming off it for 2 weeks my mood bounced back automatically, so how can they prescribe it knowing it's all being caused by tamoxifen, so like you I refused to go down that path.

I'm optimistic that the medical team can come up with some sensible suggestions as I said before they must of had patients on their books who don't suit the drug, I live in hope that there's an alternative for me.

I hope so too and if they do come up with an alternative, that works for you, let me know as I would happily give it a go.  Quality of life is equally as important!

Well I had my emergency appointment today with my breast care consultant & I laid out all the side effects I have been suffering from, he referred to tomoxifen being toxic & it sounds like it is poisoning my body so we discussed my options:-

1) stop taking it & roll the dice by risking the cancer returning, he can't give me a percentage of probability 

2) take an injection of zoladex monthly to bring my menapause on early, but still have to take tamoxifen 

3) permanent removal of my ovaries to stop them making oestrogen which will bring on early  menapause 

4) keep taking it & have no quality of life 

He kept referring to choices, at which point I said the above options are not a choice I want to happily take, I have been referred to an oncologist & gynaecologist to discuss further, in the mean time I have been taken off it & I have some serious thinking to do.