Thanks for your comments. Still not sure what to do. I think I will try and keep taking it. I just wish the Onc hadn’t given me the choice. He sort of said because it was low grade it wouln’t matter if I took it or not. I just don’t understand this. I’m not sure what my stats are on it coming back.
Lindsay, you have very similar stats to me and can relate to that debilitation. i have decided to give myself a tamoxifen break- last took it on Thursday. The depression has lifted and I am much more able to cope. I felt so bad on Friday that I had to stop it. I am seeing the hospital in a couple of weeks time to see what they say. We really are stuck- risk of recurrence higher or no quality of life.
Rachy xxxx
Rachy7
Thanks for your post, please let me kinow how you get on at the hospital.
I suppose if in the end we did come off it and it came back you would have a hard time reconciling yourself to it, buy the quality of life at the moment is very poor.
Is there anybody out there who reads these posts that has made the decision to come off hormone treatment and would like to comment
Lindsey
Hi Ladies,
I made the decision, with my onc’s blessing, to stop taking Tamoxifen altogether as the SEs were so bad after 5 months. However, he calculated my risk of mets or recurrence using a program called Adjuvant Online and he was happy that the drug only made a very small difference and it was more important to preserve some quality of life.
Everyone is different and you need to get your oncs to share your stats with you so that you can make an informed choice. To answer Swissy’s question about why they put you on it - I believe it is because it is the standard treatment plan and it is what they will follow unless you question it. I think there are a lot of women out there who don’t question the details and maybe put up with the SEs because they think they don’t have a choice. For some people, the choice is that it is better to endure the SEs because the drug significantly reduces the risk, but for others, they may be suffering for very little or no benefit.
A last word of caution too - it may not solve all your problems. Many of my SEs have improved so I have no hot flushes or night sweats and my brain seems a lot less fuzzy, but I still have joint pains and I am still really tired. This is now nearly 3 months after stopping Tamoxifen. I am 47 and premenopausal.
E xx
Hello Ladies,
I don’t have much to offer you that Elsk hasn’t already said and I am in a very similar position to her in that I’m still strugling with joint pain (drug induced arthritis) and fatigue 7 weeks after stopping Tamoxifen with my oncologists agreement.
The most important thing is that your oncologist clearly explains to you the potential % improvement in your statistical survival rates if you take the drug.
I have also spoken to my GP at length about the NHS approach to hormone therapy and he told me that we in the UK adopted the same ‘belt and braces’ approach of Tamox for 5 years for all hormone receptive patients because in Germany they saw a 30% improvement in survival rates 5 years after implementation.
One other thing that may be of interest to some is that in the US some oncologists advocate a weeks break from Tamoxifen if the side effects are bad. They say that often when restarted the SE are less, especially the hot flushes. I don’t know why this should be but it may be worth a try.
I do wish there was an easy answer for us all but alas there isn’t one, we are all individuals trying to cope with a very complex disease…
Wishing you all a goods nights rest.
Minx
I have now been on Tamoxifen for 2 years and suffer like most with the flushes and night sweats which disturb my sleep and leaves me feeling quite tired. I don’t have joint aches but I have found that my hair is thinning and I believe is one of the SE’s of Tamoxifen. Does anyone else have this problem?
Thank you for that information Minx, I think I will try the week’s break
Hello ladies,
Have read all the comments on this with interest and thought I would just throw my experience into the pot. I was dx in 2003 (grade3 and strongly oestroegen positive)at the age of 38. Took Tamoxifen up until Nov 08 and then refused to take it anymore because I just wanted my life back as it were. SEs weren’t horrendous it was just that I never felt really well on it. Had 18 months getting back to normal (very nice)but have just been diagnosed again in May with a new Grade 2 tumour in same breast (Oes Pos again) so have had MX and started chemo last week. I told the onc this time before the chemo started that my periods had returned and would he test my hormones to see if I was pre or post menopausal. He agreed but said he thought I was bound to be menopausal. Test results confirmed my ovaries were functioning beautifully and I was most definitely not menopausal.
I tell you all this because I wonder if I could have kept the cancer at bay for longer if I had kept taking the tamoxifen. It almost seems to much of a coincidence that as soon as I stop taking it my ovaries start working again and the cancer comes back only this time I’ve got it a bit earlier than last time. I’ve not fully discussed all this with the onc but I’m wondering whether to ask for ovaries to be removed this time to avoid taking tamoxifen in future. Seeing him next week for next chemo cycle so will see what he says and let you know his view.
In short, if I had my time over I think I’d have stuck with the tamoxifen or at least asked about ovary removal although this was never even suggested to me at the time.
Tamoxifen does not affect ovary function. It just stops oestrogen sticking to cells. If you have your ovaries removed you will still need to take tamoxifen or an AI hormone drug.
Hi angel, I’m too has taken tamoxifen for 2yrs. Missed it for over a year now, my question is will it be okay if I’ll take it on again, I’m afraid to discuss this with my onc, coz I stopped it all at once without him knowing…
Hi just read your post, I’m 7 yrs post breast cancer,chemo and radiotherapy been on tamoxifen for 6 yrs I had a total hysterectomy nearly 2yrs ago, I’m sick of being fat and feel8ng like **bleep** all the time. I’m beginning to start to think My husband has gone off me because of all the weight I’ve put on I’ve only missed the gym 4 weeks as to work commitments but omg in 4 weeks have I piled on the ££££££ all around the belly and butt area.im 39 now please help me xx
Hi Theodoloh sorry to hear of your difficulties. If you have had the hysterectomy wouldn’t you now be post menopausal? Couldn’t you ask for anastrazole instead of tamoxifen as that medication would be more appropriate. You may feel better on an AI instead??