Looking for some advice and am happy to listen to anyone’s views because I am really undecided about taking tamoxifen.
Been told I have to take the drug for 5 years I really struggle with this because I have looked at all the side effects and really wonder whether I should take it. Feels really wrong to be pumping my body with drugs that could cause sickness, pains, lady problems etc etc the list just goes on and on. I should have started taking them 2 weeks ago but as yet I haven’t collected them. Is there any one out there who like me feels really nervous about the drug and refused to take it?
Of course there is another side of me that is saying if you don’t take them the gremlin could come back!
Why don’t you start taking it and see how you get on? We often see the worst of the treatments on here as we see feedback from those who are suffering. Those who aren’t suffering don’t tend to post on here so we get a very biased view. Of those people I know in real life, my aunt, a young woman I met on my chemo ward and another I met on the Young Women’s Forum are all taking Tamoxifen and haven’t had any side effects. I’ve been taking it for just over a month now and my hot flushes (which I think were from chemo rather than Tamoxifen) are really mild now - practically non-existant - and I get slight aches in the morning or when I’ve been sat in the same position for ages. Apart from that - nothing.
As with all drugs there are potential side effects and as with all drugs, you might not get any of them. Or you might get all of them!! But you’ll never know unless you try.
It is an amazing drug that has saved thousands of lives. My prognosis is increased by 10% as a result of Tamoxifen - do you know the benefit to you? I would say give it a go and then if you do get side effects, then address the problem.
Of course you should take it, I read all the SE’s and like you had a mahoosive panic, especially the thinning hair, as my hair is already really fine, I have been taking the dreaded tamoxifen for just over a year, and the SE’s I’ve had are - a raging thirst (this has eased a little) but I just carry a drink with me wherever I go, occasional and I mean maybe once a week maximum night sweats, a few bouts of thrush, and *touch wood, that’s it, my mum says you shouldn’t read the meds leaflets unless strange things start happening.
I know there are some ladies that are having a terrible time on tamoxifen, but that is why they are still regularly posting, (I only v.occasionally post these days) also, those that have had chemo, are probably still experiencing the after effects of that. There are probably twice as many ladies having no or very few SE’s that don’t post because they are trying to get back to ‘normal’, whatever that is.
I hope this helps, and remember, they have to tell you about ALL SE’s same as they tell you, what COULD happen before your op/rads/chemo, it doesn’t mean it WILL happen. I don’t like taking it, but I see it as protection for the next 5yrs.
If you still feel you absolutely cannot take it, then you really need to discuss this with your bc team.
Good luck luvvie, get that prescription collected.
If you have a hormone receptive cancer, hormonal treatments such as Tamoxifen or Letrazole are supposed to have a greater effect on survival rates than chemotherapy.
Hi sunshine, I have been on tamoxifen since 27th oct, and I haven’t really had any side effects. I was worried also but with a very er+ cancer then I have no choice. I asked my onc how do you know it works and she replied you don’t!! However my breast surgeon told me my cancer was very er+ so of course it would work, please try it, karen xx
Hi Sunflower,
I decided I did not want to take a drug for 5 years. I had a small tumour, no node or vascular spread, so my prognosis was good anyway.
I decided to look at my diet, change my lifestyle, balance my hormones through natural alternatives.
I’m in my 4th year now of ned and feel very fit and healthy.
It’s your body and you need to feel what’s right for you.
Best wishes
Leadie
It is your body and your life and up to you to weigh up the risks! I don’t agree that the only people posting on here are the ones with the problems! I am off getting on with my life and enjoying life etc however I, just like you, don’t like the idea of taking stuff that interferes with my body…even though its my body going haywire that caused this in the first place!!
I don’t think anyone can say they have no side effects, mild side effects may be or even ones that go unnoticed or are masked by something else, but when you were a person who was healthy, happy and never even took a paracetemol before diagnosis it can be very hard to come to terms with taking a drug that alters ones body…and it does alter your body!
I have a 6% benefit from taking it and am going to review it every 6 months and if I feel it is causing a drop in my quality of life then I and I alone will decide whether or not to keep taking it. Its my life at the end of the day and its your life too. Good luck with your decision!
Tamoxifen was a huge breakthrough discovery that dramatically increased overall survival rates - and most women think any side effects are a small price to pay for maximising their chances of a full recovery. Of course you must take it. Unfortunately some (but very few) find the SEs to be very severe or difficult to deal with, in which case your oncologist will explore alternatives, but please don’t be put off by the leaflet. for most of us the SEs are very mild.
al the best
Sarah
Im a bit wary of taking Tamoxifen but i agree with the others that u mostly only hear of the bad stories on here. My onc told me that it would make a 20% difference in recurrence risk in my case so for me it was a no brainer. Im ER+ 8. My chemo was only going to make a very small difference but i still had it as i wanted to throw everything i could at it.A friend of mine had Tamoxifen & said she had no SE’s whatsoever. Its your decision at the end of the day but i would have another chat with your onc before u make a final decision not to take it. Good luck with whatever u decide to do.
I hate taking pills and potions and, before my ‘lump’ I hadn’t seen my GP for 5 years! But, for me, tamoxifen was a no brainer.
I’ve been on it since 10th August and haven’t even had a hot flush! I occasionally ache a bit in the mornings, but I am nearly 50 and do ‘active’ things, so that might explain it.
You may decide not to take it and not have any recurrance, you may take it and get one. Just make sure that you would be fine with not taking it and having a recurrance.
Just wanted to add that I took Tamoxifen for 5 years and had very few side effects, main one being weight gain which has now gone. Everyone is different so please give it a go.
Unfortunately cannot say the same about Letrozole but thats another story!
i completely understand not wanting to take it. since my treatment i am so reluctant to take anymore drugs (even paracetamol) and would much prefer to take control of my life through diet and well-being.
However i don’t know if this will be enough and i daren’t risk not taking it if there is a possibility it can help prevention of recurrence so i have been since May 2011. I do suffer from hot flushes, night sweats but that’s all and they have settled down a little.
When it comes down to it you DO have a choice, but just think very carefully before deciding.
Just to help you get a bit of perspective (guilty here of being first in the queue for getting things out of perspective) think about pills you would have little thought about taking.
Have you read the leaflet that accompanies ibuprofen for example? Scary stuff! Or paracetamol? If you read that leaflet you’d be terrified at taking it just for a simple headache.
A very good point help you get your own perspective on it all is to read the leaflet (thanks Louise) and maybe give the helpline a ring. They’re a great bunch, and their sole purpose is to answer questions from people like you and me.
Nobody can make you take it, but Tamoxifen can have a massively positive effect on your chances of surviving this nasty, nasty disease.
thanks so much for all your replies everyone has helped a lot, I have to nip out soon so will read them in full later, but just seen Jennifer Saunders on This Morning speaking out against Tamoxifen, so I googled it and found the article below, makes interesting reading, the jury is still out!
But again, that’s HER side effect. It doesn’t mean you’ll suffer from it. Some people would die if you gave them antibiotics (ok - an extreme example - but everyone reacts differently). At the Haven I met a woman who had suffered depression on Tamoxifen with suicidal thoughts but her doc just halved her dosage and said that would still give her some protection and she said she immediately felt better. I have suffered from depression and also get affected by PMT etc but Tamoxifen hasn’t altered my mood at all. I feel fantastic at the moment. Finish rads next week, have had my chemo hair cut and dyed, will get my expanders pumped up the week after next and I’m ready for the Christmas parties!
If your main concern is about the side effects I wouldn’t panic until you’ve tried it and seen what YOUR side effects are, if any. If you do get any unpleasant ones, then you can talk to your onc/GP and see if there’s anything that can be done and if not, stop then. You could be like one of the many of us who have posted and feel absolutely fine.
Not posted for ages, but pop in and read sometimes.
I know how you feel. I am on Arimidex and put off taking it for a week after collecting my prescription. However it has caused minimal SEs for me. No difference in how I feel. I’d been having hot flushes and the other joys of getting older for years anyway, so it’s obviously not helping to stop them. Joints are achier, but I’m back Scottish and Garland dancing. I was only 2/8 positive to oestrogen, but I still feel I want to do everything possible to keep cancer free. I already did lots of exercise and had quite a healthy diet and I still got an aggressive cancer.
It is quite possible that Jennifer’s depression was the common ‘end of active treatment’ depression so it may or may not have been connected to the Tamoxifen. My advice would be the same as many others - try it and see how you are. If the SEs are too bad you can always stop or reduce the dose.
Best wishes with making the decision.
Tamoxifen has been used for over thirty years and has extended countless lives. It is your decision whether to take it or not. However your team would not have offered it to you as a multidisciplinary recommendation if they did not think the benefits outweighed possible problems. If you do not take it you will not know if the side effects would be unbearable and if they are you could always stop it. if you have trouble in the future would you blame yourself for not having had something that was of possible benefit?
It might help you to ring the Helpline 0808 800 6000 and talk things over with them. I would take anything I could to keep this disease at bay …but that is a personal opinion. If you read the side effects on a packet of paracetamol you would never touch them.
This is such a frightening disease as we all know and personal control is often taken away from us. Remember people with problems often make more noise than those that are doing well… There are always more bad news stories in the media than positive.
I so hope you can make an informed decision soon.
This is a general answer, not specifically for the one who asked the question.
If you have secondaries, YES (unless and until the side effects become intolerable). Same applies to Arimidex, letrozole or exemestane - these can be literally life-savers. Letrozole gave me good control of mets for almost three years.
If you have had treatment for primary bc and are recommended by your oncs to take tamoxifen or another hormonal therapy to reduce risk of recurrence, that is a very different situation. Be thankful that you don’t have secondaries - as far as you know - and make your decision.
I’m posting this because people can sometimes be confused about these two scenarios.