I know this topic comes up from time to time so apologies if going over old ground.
I’m trying to decide whether to take tamoxifen or not? I’m 44, and had bilateral mastectomies so in theory I have no breast tissue for a recurrence (!), though in practise the surgeon said 5-10% of breast tissue could have been left behind. I had Grade 2 tumour in one breast and DCIS in both. I’ve been told some really good news by the oncologist - I don’t need chemo or rads and my 5 year survival score is 90%. This could be increased by 3-4% if I take tamoxifen.
I have reservations about starting this drug. It’s not just the possible side effects but also that I will feel taking the pill will be a daily reminder of cancer for 5 years. I’m starting to feel really well physically (now 8 weeks post op) and see this drug as poisoning my system for minimal benefit in my case.
Am I being ridiculous? Any thoughts would be appreciated?
You are a woman after my own heart - you are not on your own with this - I too have had all the same thoughts - have had surgery twice (WLE) chemo and due to start rads next week and have been advised to commence my tomoxifen the week after next - I really do not want to for all the same reasons as you - side effects and how this will impact on my life, poisoning my body yet more and of course that daily reminder. When I talked this through with my GP she advised me to look on the tablet that I was to swallow each day as a ‘healthy pill’ one that should be treated as an insurance policy - but as we know there are no tight assurances in this game. For me it’s all about risk versus benefit - yes it may increase my chance of non re-occurrence but what impact will it have in the meantime on a day to day basis.
So - after a very long time contemplating this I have decided to try it - see what impact it actually has on me and if I don’t like what it has to offer on a day to day basis I will stop taking it. You never know we may not have any side effects or at least they may be minimal. I am already thrust into the menapause at 43 by chemo so having flushes and sweats - it must be a little more difficult for you because (I am assuming) you are not menopausal as yet.
You will decide what is best for you and that’s the main thing. I know that people think we’re bonkers even contemplating NOT taking tomoxifen but in my mind - this is about the whole person and not just the ‘breast cancer’ (if that makes sense).
I hope that whatever decision you come to is good for you - let me know what you decide.
In the meantime take good care
Janey x
ps the funniest thing was that I was advised by a Prof to commence tomoxifen two weeks after finishing my chemo which was two weeks prior to second lot of surgery - completely mis-informed - there is a risk of DVT with tomoxifen and of course additionally with surgery - the drug company recommends that it should not be commenced until 4 weeks after any surgery - good job some of us have our wits about us!! Had I not had the thoughts about not taking it and using my own delaying tactics - I would have already started to take it and my surgery would have been delayed - RISK?!!
I would do anything to help stop the cancer coming back. I had chemo even though it only gave me 2-3% extra on my survival score. I will be starting to take Tamoxifan next week and I cannot wait - it feels weird not having chemo anymore almost like I dont have any protection. I have 2 young girls and I will put up with almost anything to see them grow up.
We are all different and whatever you decide I wish you well.
Unfortunately haveing a mastectomy doesnt gaurentee that any of us wont get a reacurrance ( i wish it did) this is because breast tissue gos beyond the breast up to the clavicle area and underarm , so it is impossible to remove all breast tissue.
I have been on Tamoxifen for 6 mths with very few side effects ,some hot flushes, which ive had since chemo anyway ,slight nausea for the first few weeks which has long since settled and a bit of weight gain (proberly more to do with now being in the menopause)
Some ladies do decide not to take Tamoxifen, including some famous people such as Caron Keating for their own reasons. But like Lisa, i will take anything on offer to reduce my risk of getting this thing back.
It is a personal choice though and only one that you can make.
You could mabe give it a try and see how you get on before makeing a decision.
Whatever you decide will be the right decision for you .
All the best
Lindiloo x
I have had same worries as you, I had chemotherapy , lumpectomy and full clearence as was a grade 3 now having 30 rads. I got prescription then keep making an excuse not to take it, it was another poison to add to my system, I had not had any medication, antibiotics etc for 6 years before all this, I was very and still am really very healthy. In comparision to the chemo its nothing but I still did not want to take it.
I talked all through with my daughter who is a nurse, my worries of side effects etc and she said but mum would you not rather be possibly a bit fatter, hotter etc or whatever side effects you get, ( thats if you get any, cos I was not too bad with the chemo) than for it to come back, its just abit more protection , after our chat I thought abit more and then took it.
I have been taking it for a month now, no, nausea or sicky feeling litle bit hotter than normal, but not as bad as after chemo, I get very hot after my morning black coffee only one of the day as I have cut right back. So for me so far I have made the right decision. Who knows what will happen in future if effects get worse but I will take one day at a time.
You have to do what right for you, everyone is so different,
Let us know what you decide and we can support each other further if needed.
Take care
Dawn X
Thanks all for your comments. I have sort of resigned myself to taking the drug and see what side effects I get. This is the sensible thing to do I know but part of me still sees this as once again giving up control of my body to a heinous treatment and I’m not convinced of the benefits. I’ve collected my first prescription from the chemist and it is now in the bathroom cabinet. I think I will start taking these after the hot weather has died down / my next period - more delaying tactics but I want to feel ready to be giving up my reproductive self / sex life.
Hi Misha,
Im glad to hear you have decided to give the Tamoxifen a go, try not to worry to much, many, many ladies take Tamoxifen with no or few problems. As for the Sex life i can honestly say mine has never been better, lol Honest!! .so just try and take the pill as soon as your ready, chances are youll be fine and if not they can change brands for you, or mabe give you other options. What brand have you got ? Im on ASP and take mine at bedtime.
All the best
Lindiloo x
I know that I have posted up the side effects of tamoxifen that I have had, but I am going back to my onc in 2 wks to see if I can have another brand and try that. I had many factors that may have contributed to my side effects that I have felt so I want to try it again.
Sorry if I have caused some anxiety in some of you. As I have said, we’re all different and drugs affect us in different ways.
I’m glad that many of you haven’t had side effects and this gives my confidence to try it again and try prevent the blasted bc visiting me again.
Good luck to you all and keep posting your comments as it is a learning curve for all of us.
Hi all
I have found this very interesting and helpful as I’m not even as far as considering taking tamoxifen as I can’t bring myself to come off HRT! I posted my question re HRT after a DCIS on the Hot topics forum but no one who replied seems to have had the same dilemma and this seems to be the closest I read. I have had a lumpectomy and 25 sessions of radiotherapy and am waiting to go back to see the consultant in aug. I find myself in tears just at the thought of coming off HRT and the thought of tamoxifen really scares me. I have to say it is the effect on my weight and my sex life that I am really worried about so any help would be appreciated.
I have an appointment next week to see ongl about taking this tablet, finished rads in June and have decided I will give it a go so will keep you posted
Hi Mushroom,
I felt very much like you have about taking tamoxifen and like you decided to give it a go. There is a possibility that it will be ok I suppose.
Anyway 5 days of taking and I have felt no different so far. [I know early days yet]
I wish you well when you start. We can always stop if it does get too much.
Margaret
I started to take the ‘thing’ last Friday (also in the middle of rads at mo) - felt sick all weekend with reduced appetite - can cope with that - then strangest thing happened on Sun/Mon with my hearing - all muffled very odd!! Then on Tuesday almost fell over with dizziness - real dizziness unable to walk straight! Obviously didn’t know if it was Tamoxifen, Radiotherapy or just some sort of common viral thing - called BC Nurse who advised to stop taking it and recommence in a couple of weeks. Will wait until rads over then try again!
Hi Janey, i dont know when you are taking your pill but you could try taking it at night with a glass of milk. This is supposed to be the best time to take pill to reduce side effects.
I cant understand anyone deciding not to take Tam without trying it out first. Not wishing to upset or annoy anyone but not everyone feels horrid on it and you could take it and feel fine. I think its easy to get abit blaze about the ‘after treatements’ and i even moan about them but what i do it this.
When you are first told you have cancer, that feeling you have is uncomprehendable (spelling) to anyone who has never had cancer. At that moment you are told the room spins, you go deaf and you immediatly think you are dying and will be dead in 6 months. At that moment if the doc tells you that you can take a pill which could keep you alive but it will make your bones ache etc you wouldnt care. I know its not easy when you do get side effects but its a whole lots better than being told you have secondries.
For anyone trying to decide wether or not to take them just give them a good try first and remember how you felt when you were diagnosed.
I also think we blame everything on our tablets but we need to remember that alot of the symptons we would get anyway with the menopause.
I have been on Tam since OCT 2006 and have had side effects which come and go, including hot flushes, weepiness, weird rashes, bit of nausea, blurred vision and aching joints. I moan and groan but would have to be a lot worse to consider stopping it and, if I mention stopping to my husband, he hits the roof. I have decided that the small cons by far outweigh the risk of the cancer returning. I have also put on lots of weight but, having rejoined weight watchers a week ago, have discovered that I have no will power and all the rubbish I eat is responsible not Tamoxifen. 4lbs down, only 3 1/2 stone to go…lol
Mushroom
Well done for putting that first tablet into your mouth! It is so difficult to do it. I have been taking mine for nearly three weeks now and nothing has happened.
I do hope that it continues this way for both of us,
Margaret