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Tamoxifen or not

8 REPLIES 8
Kess
Member

Re: Tamoxifen or not

this post is quite helpful. It explains the different ways of using stats. It is important you know which your team is using when assessing options. If your absolute risk is only 5%, and they tell you something will give you a 50% benefit, this means only 2.5% actual reduction,

http://www.breastcancer.org/risk/understand/abs_v_rel

However, if you have a 50% recurrence chance then it will be much more worth taking.
Mollymcg
Member

Re: Tamoxifen or not

Just another statistic to cheer you up!

 

The 6 percent didn't necessarily die of breast cancer, by the way. They just do the numbers of women still alive. 

 

Statistics are exhausting I have decided... thanks for responding as it's really comforting to know you're not alone refusing to be a shell of your former self. 

 

 

Mollymcg
Member

Re: Tamoxifen or not

Dear all, thanks so much for your responses. 

 

I think it shows that having information is key. I was told my risk would be reduced by 40% if I took Letrozole. That was 40% of one person. 

 

I also think for people whose risk is very low, the advantages of hormone treatment are pushed forwarda nd no-one emntions the women who get recurrences while on Tamoxifen etc. They are no guarantee. 

 

I have now seen my GP as well as the other specialists and have chose not to take it. He thought it was the right decision and talked a lot re side effects caused by different preventative medicines. 

 

I found explaining to everyone quite exhausting and so now I haven't really told them. I am just getting on with my life. 

 

Bondgirl
Member

Re: Tamoxifen or not

Hi Janemood

Sorry you haven't got a communicative oncologist, when I had my break from 15 Dec to 19 Jan I felt better but the trigger thumb stayed in both thumbs told it would go away but in May it still hadn't so I saw a hand surgeon who gave me a steroid injection in both (he did the at risk arm too as he said there is no link to lymphodaema) after 2 weeks that cleared up.

One thing my oncologist offered me was take ananstrozole every other day as this would be better than nothing at all.

You are not a failure you have managed 2 years and your mum is only worried at seeing that her daughter could get BC again. My husband also wants me to take the tamoxifen for the same reason. dont get me wrong but I am scared stiff of it coming back.
janemod
Member

Re: Tamoxifen or not

Hi Bondgirl, just read your thread and was interested to hear what you have been going through. I too had lobular cancer,
2 1/2 years ago, radiotherapy, and given Tamoxifen, I hated the sweats, and general side effects, but unfortunately developed a blood clot on my lung, it is a long story how we found that out, but had to stop taking Tamoxifen straight away, a 6 month course of Warferin, and was given Anastrozole instead, and OMG, the joint pains were horrendous, shinslpints, carpel tunnel, plus all the things I already had from Tamoxifen. After 3 months I came off for a month as I had my daughters wedding and was feeling so awful, went back on it after a month, but it continued, they wanted me to go through 6 months of the new drug, hoping it would improve, but no luck, so I have now stop taking it 5 weeks ago. I had an appointment at the hospital last week about what I am going to do now, but could not come to a discussion, the first time I could not communicate well with the doctor I saw, so we decided together that it would go to the weekly meeting and see what the BC team thinks. This doctor said I could ,1 go back on Tamoxifen, but I was told by the specialist never to take it again, and once you have a blood clot, it's likely that I could have more, 2 carry on with this horrendous Anastrozole and suffer or 3 go it alone and run the risk of BC, neither of the choices are great. I have also been told taking these drugs, the first two years are the most beneficial years, than the remainder, and I have managed 2 1/2 years.
I do feel like a failure, my mum is always begging me to stay on it bless her, but you have to take it to know the pain, let alone all the other things. I admire your courage and wish you all the best for the future. Hopefully soon I will feel confident in my decision which ever way it goes.
Take care from Janemod
Bondgirl
Member

Re: Tamoxifen or not

Hi, I was do March14 with grade 2 invasive lobular and ducal. Had surgery, chemo, more surgery then rads all by end Nov14. Then oncologist said I had to take ananstrozole as my cancer was oestrogen fed and that it would give me a 20 percent benefit - I thought gosh I have to take this its a no brainier, then after 5 days of taking it I felt dreadful and by day 12 I couldn't finction, no sleep, every joint ached, felt very very depressed ( and I am the most positive happy person) so phoned Oncologist secretary for a meeting 2 days later. In the meantime I went on the NHS Predixt tool and put in all my info it came back with a 1.3 percent benefit so when I saw the one I challenged him as to where was this 20 percent he had talked about it. Well he said it was 20 percent of the remaining 6 percent which meant 1.3 over 5 years. I told him I didn't want to take it he asked me to take a break till end Jan 15 I went back and said no I still feel the same, he asked me would I comsider Tamofaxen instead I said I will think about it and got a reprieve till this Sept BUT I will not be taking ANYTHING as I feel now like I am back to my old self in every way, without being crude even our sex life has improved as I am not dry anymore. I

I talked to my surgeon about this at the end of Feb15 and he said it was about quality of life also. What I haven't mentioned is that my OH had grade 3 bowel cancer in 2013 so my surgeon said go live your life.

Many people on this forum would disagree and don't want to offend anyone but we are all different and we each have our own way of dealing with what has been thrown at us, rightly or wrongly I have but this in a box and put it away and I want to move on and forget about all we have been through and live whatever life we have together happily without me being the chemically induced **bleep** from hell with the hormones not being able to do physical stuff coz I can't move and be a shell of myself due to lack of sleep and depression. Even tho the one said I can give you medication for depression, lack of sleep and joint pain - I said no I don't need all that if I don't take this one little pill which will only give me a 1.3 percent benefit for 5 years

Sorry to go on but gosh I feel good for getting all that out xxx
Ash66
Member

Re: Tamoxifen or not

Hi. I finished chemo and had my last surgery in April. I was then prescribed tamoxifen by my surgeon who hid a smile when he said I'd be on it 10 years and I quote 'if you can put up with it'. I put up with it for 3 weeks then decided I wasn't taking it any longer. My GP agreed with me that quality of life is important and so did my bcn unofficially. I could not function normally and as I'm only 49, I have to work and look after my family. I'm not convinced of the beneifts of these drugs and the medical profession admit they have no idea who does benefit from them. Everyone is treated the same. It is an informed choice. I wouldn't try to influence anyone else. We all have to decide what's right for us.
x
missmore
Member

Re: Tamoxifen or not

Hi molly

how interesting,  I am struggling to get my head around tamoxifen. I 53 tomorrow,  and following results from surgeon yesterday I have been advised that I would be taking it for 5 years and then another 3 years of something else, I had switched off at that point because I had only been expecting to have radiotherapy but he said because of my age and the size and site of the tumour I should have chemotherapy

so although tamoxifen was forefront in my head, it's been over taken by chemo

could you private message me with your thoughts and what you are looking to do if you stop taking it?

Sheena x

Mollymcg
Member

Tamoxifen or not

Hi,

 

I was dx in December, had op and radiotherapy. My lymph nodes were clear and my tumour was grade 2. 

 

I was on hrt and since coming off I have really struggled with hormone treatment and tried letrozole (am post menopausal) and had to come off. I then tried Tamoxifen. I felt terrible, swapped brand and found that better but the hot flushes were so debilitating and I just felt as though I was going to feel ill for 5 years. I have now stopped taking it. 

 

I have done a massive amount of research and have got to a point when I have questioned the benefits of Tamoxifen. I just wonder if there is anyone else out there who feels the same. Just to clarify I am not making an "alternative" choice, but an informed one. 

 

Thanks.