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Tamoxifen 5 years versus 10 years

(10 Posts)
Delatron Thu 01-Sep-16 12:52:05

Anybody else coming up to or been through 5 years of tamoxifen following breast cancer? 5 years used to be the gold standard but new research is saying 10 years reduces the risk of reoccurrence further. My oncologist is insisting I only do 5 years as I am low risk and there are other side effects/risks from staying on tamoxifen but I want to do everything I can to stop this from coming back again!

I know every case is individual but just wondered if anybody has had any recent advice or decided to stay on tamoxifen for 10 years instead of 5? Thanks

wineoclockthanks Thu 01-Sep-16 14:37:28

I'm a bit behind you but this might be helpful - I've been on tamoxifen for just over 2 years now. I've been told that I will be on it for another 3 years (ie 5 in total) then I would have a blood test to establish whether I am pre or post menopausal. Depending on the results of that, I'll either continue on the tamoxifen or go onto a different drug for another 5 years.

Delatron Thu 01-Sep-16 15:27:35

Thanks wineoclockthanks,I'm pretty sure I am still premenopausal so if I were to continue it would be tamoxifen I guess. I'm having difficulty understanding why my doctor wants me to stop when new research says stay on it. I think I need to ask him some more questions and do a bit more research, tricky!

mrsrhodgilbert Thu 01-Sep-16 15:33:22

I've been told the same as you delatron, I'm two years in and at a recent oncology appt asked the very same question. The response was five years only because I'm low risk but he got a bit tetchy when I queried that. I'll just have to keep having the conversation, my fear is that it could be a financial decision on the hospitals part. I've also been told that tamoxifen would be fine to continue with post menopause, again something I need to talk about again because it goes against everything I've been told so far.

Delatron Thu 01-Sep-16 16:09:01

That's interesting mrshodgilbert, I wonder how they define 'low risk'. Doesn't seem scientific or definite enough for me considering all the research I have read about the benefits of 10 years. Arggh. It's hard isn't it? These are the experts yet I don't want to face cancer ever again. Yes I also thought you moved off tamoxifen after menopause too.

I hope it's not a financial decision, though I did read somewhere tamoxifen was quite cheap but you never know. There needs to be consistency amongst doctors and maybe a definition of low risk, at the moment we seem to be at the whim of the individual doctors?

PollyPerky Thu 01-Sep-16 17:27:41

I'm coming at this with only what I've read in the press and you guys sound clued up- but aren't there risks with Tamoxifen (bone density issues and possible uterine cancer) that in some women might mean 5 years is better?

PollyPerky Thu 01-Sep-16 17:35:20

Is this of any help?

www.theguardian.com/society/2016/jun/05/breast-cancer-drugs-decade-study-aromatase-inhibitors

Delatron Thu 01-Sep-16 17:45:14

Thanks pollyperky. Yes there are some risks and that was the angle my oncologist was going with, that as I am low risk it isn't worth continuing due to potential side effects and risks. There is a slight increased risk of endometrial cancer but this is often caught early are rarely fatal. Whereas secondary breast cancer is. Think tamoxifen can affect the liver too. This isn't covered in the research though.

Thanks for the article, trying to read everything I can get my hands on at the moment. Research seems to say do the 10 years but I guess individual doctors are recommending otherwise in certain cases when they are weighing up risk versus side effects.

mrsrhodgilbert Thu 01-Sep-16 22:51:09

I don't know exactly what they class as low risk and to be honest I'm one of those who hasn't asked for a detailed prognosis. Therefore having a conversation which would need to involve survival statistics would be very difficult for me, low risk is something I can cope with. I have three more years before this decision needs to be made so I'm hoping more info will be available.

I am more concerned about the move to letrozole which I think will happen for me within the next year, I'm 52. I have always been told that was the plan, until last month when it changed. I'll be getting a second opinion before I make any major decisions.

The guardian article is very interesting and definitely at odds with my oncologist.

Delatron Fri 02-Sep-16 14:26:39

I think getting a second opinion is the best idea. My oncologist is fantastic but when I saw a local one recently as I had problems with my implants he said I should definitely be on tamoxifen for 10 years despite being low risk. Mind you if I get a second opinion and it is a different one that is no help either!

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