Hi all
I have had a mastectomy and ld reconstruction, chemo, am lined up for radiotherapy in August. I saw the oncologist last week and was given a prescription for tamoxifen.
My gut reaction is that I do not want to take it. I am 41, no problems with my periods before the chemo. I feel that I cannot face the menopause and all the side effects that go with it.
I have read women describe the side effects and then end with ‘well at least the tamoxifen is keeping me alive’. But is it? MY cancer was stage two, affected five lymph nodes. I had the chemo as the oncologist said it reduced my risk of recurrence by 15%.
I would be interested if anyone has just stopped at surgery or chemo and not taken the hormone therapy.
Nicola
Hi Ndean
Welcome to the BCC forums. Whilst you wait for the other users to reply with their experiences can I suggest you give the BCC helpline a call and talk things through with one of our trained members of staff. Here you can share your concerns and discuss any questions you may have with someone who will be able to offer you emotional support as well as practical infromation. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Hello Nicola,
Sorry you have to join this club, but it’s a good place for honest expression and mutual support. Briefly, I was dx at age 47 massive ER+ tumour and one suspect node; FEC-T (brilliant reduction in tumour size) then mastectomy (mx) and LD recon followed by rads, now on Tamoxifen. I have been taking it for about 18 months and, depsite side effects, am one of those ‘but I’d rather take it than risk the consequences’ women.
Reading the Tamoxifen side effetcs threads on here can be worrying - but please remember those of us with significant side effects are very much the minority and we post here as mutual support as often there is no one else nearby who has the same effects. Lots of people have no unpleasant side effects, or they soon disappear, and for the few with substantial side effects there are all sorts of options that can be explored. For example, I use a Chillow (google it if interested) to help cool my head at night which helps me sleep better despite night sweats.
I can’t comment on your stats not least as I don’t know exactly what you oncolgist told you - was it 15% absolute or 15% relative, for example (if that means nothing to you, it merely indicates that stats are never straight forward!). If it is 15% absolute, then that is definitely well worth considering; if 15% relative, then it depends on how good your basic stats are, but still sounds good to me. if you are interested there is a simple online tool called NHS predict where you can input your details and it gives you an indication of the benefits. You could always try this, print it off and take to discuss with your oncologist.
Please remember that all drugs, even paracetamol or cough mixture, have side effects, and for some people even those things can be dangerous, yet we never think about taking them.
If it were me, which it isn’t, I’d say give the Tamoxifen a go for say three months and see how you get on. You may be one of the many for whom it is no bother. But if not, at least you have given it a go.
Take care and hope the rads go well for you.
Hi Ndean,i was on tamoxifen for 18mths and the only noticeable side effect i had was weight gain of about 10lbs which i couldnt shift whatever i tried.I was already menapausal after having ovaries removed but taking tamoxifen didnt noticeably increase the symptoms.6 weeks ago i came off tamoxifen because i was having surgery and again there has been no noticeable change and as Revcat says you can always stop taking it if you are one of the unlucky ones,good luck with everything,
Di.x
I am not currently taking Tamoxifen. Briefly I was diagnosed in Nov 2010, 45mm grade 3 Her2+ tumour. No nodes. I had chemo to shrink the tumour, which by the time I had finished chemo had disappeared, surgery (WLE and SNB), all clear margins, 20 sessions of radio and then Herceptin for 12 months, which I finished in February. Last year I was presribed Tamoxifen whilst still having Herceptin. I purposely didn’t read the side effects leaflet. I took it for one month and felt ok, so I thought fine. Took it for another month and bang, every side effect known to man. Horrendous hot flushes, joint pain, couldn’t sleep, twitchy all the time. Work even noticed that I couldn’t do my job life before. I stuck it for another month and then what made me stop taking it was one day I was at the side of the road in London and started hallucinating so badly I nearly fell under the traffic. I stopped taking it there and then.
BUT and it is a big but, I am not sure whether it was made worse because I was still on Herceptin. So I have now finished all drug treatment so to speak, and I plan to give it another go in a couple of months. I will take it with an open mind and see how I go. If I am as bad again I will have no hesitation in stopping again.
As with all treatment you have to decide what is best for you. If I can take it with no bad side effects I will, but if not I am quite happy to stop. I feel I have given it a damn good shot with all the treatment so far and if I couldn’t take the Tamoxifen anymore and I did have a recurrence I can honestly say “its one of those things”. For me my stats on Predict were a difference of 3% between taking it and not.
Now at 44 and perfectly healthy in every other way I feel that if it is really impacting on my life then I need to go for quality of life over potential quantity.
I suspect that if you check out your stats that the added benefit of Tamoxifen to your prognosis will be pretty much the same as the benefit of having chemo. For women with a similar pathology as myself chemo would keep another 15 out of 100 women alive and Tamoxifen a further 11 out of 100 alive.
Don’t forget that the ladies who talk about their side effects on here are suffering - and that’s why they’re looking for help/advice/a rant. However there are plenty more women taking Tamoxifen who are fine. Of all of the ladies I have met in the real world, none of us area suffering at all. I have the odd night sweat awar flush (but nothing like as bad as on chemo).
Tamoxifen is a wonder drug that has halved the number of deaths from breast cancer…so it’s worth giving it a bash. If you feel awful, then you can stop taking it. But hopefully you will feel fine! X
hi nicola
very briefly, i was diagnosed in jan this year wth a stage 2, 3cm idc with one node affected. VERY hormone positive (ER and PR 8/8). i have a had a lumpectomy but am going back in for a double mastectomy in september as didnt get clear margins. just finished chemo and then going on a trial for rads (where i may get it or not) and i have just picked up my prescription for tamoxifen, so start that in a couple of weeks. im 37.
you dont say what your hormone status is, but all i wanted to say was that when i met with the oncologist and she spoke to me about tamoxifen, she was VERY emphatic about how important it was for me to take it for every single day for the next five year. her words were that ‘it is as important, if not more so, than chemo’.
obviously this is becuase i am very hormone positive, but she was very very serious about it and made it clear to me it was essential i take it.
as far as i can tell from women who are taking it, side effects vary but there are things you can do to minimise them, and most dont get them at all, and even those that do find they wear off after a few months. like others have said, why not try for 6 months and see how you get on?
obviously it is a very personal choice, but for me i would think very carefully and speak to your oncoogist before deciding not to take it. 15% risk of recurrence reduction seems quite a lot to me.
Hi
I was diagnosed at 45, stage 2, 6/17 nodes affected have WLW, chemo and rads, 5 years Tamoxifen now 4th year of 5 Letrozole.
I was fine on Tamoxifen, just weight gain, having problems with Letrozole but I would never advise someone not to take a drug if I was having side effects with it because everyone is different, I found that with chemo.
You read on a daily basis about side effects of these drugs and I have had my moans along the way but remember that thousands of ladies are on these drugs and the majority get on fine.
Give it a go and see how you get on. I have recently been told by my Onc that with node involvement and 6/8 ER he would not advise me to cease Letrozole after 3 years so for me it is now 5 years even though I am having problems I have decided to persevere with it.
You will never know if you don’t try it.
I have been on Tamoxifen for 3 months. The first two weeks I suffered badly with indigestion, but I found taking it as I went to bed, with a little food - at first, I don’t need it now, eased the problem. Now I wouldn’t really know I was taking it.
I am also on Zoladex to induce menopause. I am 52. Even with both hormone therapies I am not really experiencing any menopausal symptoms, (other than no periods!) - many people sail straight through a ‘natural’ menopause after all - you don’t hear about them, as they have nothing to complain about!! I have had the odd ‘warm’ moment in this hot weather - but I’m no sweatier than before and can’t really describe them as flushes. My joints are no worse than they’ve always been.
My Daughter’s partner’s mum has just finished her 5 years on Tamoxifen and she wondered why I was dreading taking it, as she’s had no problems with it at all. I have colleagues with relatives who’ve similarly had no problems. What I think I’m trying to say is: you’ve lost nothing if you give it a try, and it may just stop those nasty little cancer cells from getting a hold again!
If you are one of the unlucky ones who have bad side effects, first try switching brand - it seems ladies on here have more SEs with some brands than others!
Obviously, it’s your decision and you have to come to one with which you are comfrotable!
Good Luck. x
Nicola - there is a natural alternative to Tamoxifen called Indole 3 Carbinol, you may feel happier taking that? If you google a website called Cancer Active you can read a lot about it there…
i am someone who is very sensitive to drugs and in the past to hormone treatments but have been on letrozole for 6 weeks now with no effect at all apart from some hot flushes…so you never know, but I do believe you need to feel ok in yourself with your treatment regimen…
Good luck
x
nicola unless you try tamoxifen you wont know if your going to have side effects or not and whether those side effects would be tolerable to you.
we are all very individual and what we experience varies greatly from person to person. they wouldnt have prescribed the tamoxifen if they didnt think you would get some benefit from it so i would say its def worthwhile trying.
i have been taking tamoxifen since 2006 and had very manageable side effects except for heavy bleeding early on and this was resolved when i had a mirena coil inserted. i had ER pos cancer in 2006 and ER neg in 2009 and 2011 so have had periods where i had to stop the tamox while having chemo but i havent had any problems with it since the start of 2007.
i do have a friend who stopped tamoxifen after about a year as she was really struggling with the side effects, her was grade 2, no nodes and small and had been bordeline for chemo anyway so her onc was happy to agree with her decision.
from most of the people you speak to on here if you have symptoms they will normally settle down with in the first 6 months of treatment and if they havent then its more than likely tehy arent going to.
as for reading the list of side effects… have you ever read the side effects of an ordinary aspirin? it has 27 side effects from acute allergic reaction to bleeding problems to headache!
i think if i was worried about the SEs of all the medication im on i probably wouldnt be taking anything.
take care
Hi Nicola
I just wanted to post my experience to see if it helps.
I’m 37 (36 when diagnosed), grade 2 with 1 lymph involved, had a lumpectomy, all my nodes out, fec-t and 19 doses of radiation, ER/PR positive.
I really worked myself up about tamoxifen, completely understand where you’re coming from. The percentages don’t seem that great when you’re looking at them somehow, but add all the treatment together and the prognosis definitely looks a lot better than when you review each of the component parts.
So anyway, after being slightly hysterical in the run up to taking it, I’ve been on it for nearly two months, yes there are a few hot flushes which are uncomfortable, but not at all unbearable, also my skin isn’t as good as it was on Chemo, but it’s a small thing in the scheme of things. All in all, it’s not been anywhere near as bad as I thought, honestly.
I think I can only reiterate what some of the other ladies have said, we’re all different, you really don’t know how you’ll feel until you try it.
And as we’re all different it’s still entirely up to you.
Big hugs. G x
Hi Nicola
I was diagnosed aged 38 with a hormone positive ductal carcinoma. I had a WLE, ANC, 15 rads and Tamoxifen for 5 yrs. I had absolutely no problems with it whatsoever, in fact it made my normally heavy periods much lighter which was great.
I was unfortunately diagnosed with another hormone positive cancer (8/8) in December last year now age 51 for which I have had a mastectomy/reconstruction. I am now having Zoladex injections (as I am pre-menopausal) and Arimidex tablets although my oncologist said it wasn’t necessary to have them but I could if I wanted to! As the cancer was so ER pos I didn’t want to risk not reducing my oestrogen levels. I am now getting between 4-8 hot flushes a day plus night sweats and they aren’t very pleasant but every time I have one I just think ‘take that cancer’ and I imagine it starving because its got no oestrogen to fed on. It makes me feel they are doing some good rather than hating having them.
Good luck with your decision.
Take care
Lemoncake
x
I’m 40 stage 1 (no nodes) ER+, HER2+. Have started taking tamoxifen already but going to come off it soon to start chemo followed by herceptin and radiotherapy (chemo start delayed slightly so I could have my holiday that had been booked). Will go back on it for the five years. It’s early days so no side effects other than a very slight upset tum. Not relishing early menopause but at the same time I’m very aware that oestrogen acts as a fertiliser to any potential nasties that might still be lurking. I don’t want to give them a chance to grow. Plan to keep eating healthy and exercise when possible to reduce any side effects. It’s your choice, but I think it’s worth giving it a go with the tamoxifen. You can always stop if you find it unbearable. Everyone reacts differently as so much depends on individual makeup and lifestyle. You might find the effects fairly minor and your body resumes as normal afterwards.
Thank you so much to everyone who has responded. As I think you could tell i have had a very emotional response to taking the tamoxifen and it has been so helpful to hear other people’s experiences and words of wisdom.
I am such a practical person usually but I was definitely envisaging having every side effect on the packet! I was looking forward to the end of the cancer treatment and this just feels like a constant reminder.
The oncologist actually suggested a year’s trial. I will go back to her with my sister to talk it though again.
Thanks again for sharing your experiences and tips
And I intend to call the helpline
(Posted on behalf of Breast Cancer Care’s clinical team)
Hello Ndean
We have been asked by a forum user to comment on this thread. There is a lot of good advice in the thread. We would always advise talking with your specialist and breast care nurse about your treatment choices but I know it’s also helpful to hear from other people about their experiences too. As mentioned in this thread some people do experience significant side-effects whilst taking tamoxifen, but the vast majority of people who take this drug report they manage to cope.
Breast Cancer Care has written a factsheet about Tamoxifen, which you can download free by clicking on the link; http://www2.breastcancercare.org.uk/sites/default/files/tamoxifen.pdf
It is important to point out that Indole 3 Carbinol has not been clinically tested or approved as a treatment for breast cancer, and shouldn’t be considered as a substitute for tamoxifen. At Breast Cancer Care we would advise against purchasing any treatments from the internet for breast cancer. This is because although there are many treatments advertised they are not regulated meaning it is difficult to be sure that what you are buying is the correct medication.
We would suggest only taking medication which has been prescribed by a specialist and which has been dispensed by a regulated pharmacist.
I can see you plan to call the helpline, and we’d be more than happy to talk about these issues further there. I wish you all the best with your decision and the rest of your treatment.
Posted on behalf of the Breast Cancer Care clinical team.
I am nothing to do with them other than being a grateful person for finding them BUT I find your post almost defamatory against Cancer Active - they do NOT sell anything and are totally transparent about the info on their website. Neither was I suggesting purchasing anything on the internet as I know there are so many fakes but there are safe sources for this. I would have thought BCC was about enhancing patient choice? Are you not interested in the fact that drug companies are seeking to find a way to patent the active ingredients in Indole 3 Carbinol?
Very disappointed in BCC over this post.
Hi Sascha
I can understand your disappointment but we were asked some direct questions by another forum member, which we have tried to answer in this post. They specifically asked for the opinion of our clinical team, which we have provided.
I was worried about taking tamoxifen and suffered with terrible SE including severe hot flushes and migraines but with time the hot flushes with the help of clonidine have calmed down as have the migraines, this drug is doable and it is an old tried and tested drug apparently 30 years, its not nice but the alternative which is not to take it is the great unknown I for one don’t want to take that sort of risk with my life, you may be alright not taking it but then again do you want to chance it??? its a tough one for sure and I sympathise with everyone affected by taking this drug, I have secondaries lung mets (43 dx from start with primary, periods normal until chemo which put me into early menopause) and will throw everything at this in an attempt to prolong my life, this may sound dramatic but thats what your doing prolonging your life, to put it in perspective please think about this (someone said this too me when I was questioning whether or not to take tami) all the women in the world that are affected by BC but don’t have these drugs available to to them because maybe they live in a poor country ie: africa or india, where the drugs are not available or they simply are poor themselves and cant afford to buy the drugs, I beleive we owe it to them to take the drugs we are offered because I am sure given the choice they would take them, it may be small but if there is a chance that tamoxifen can prolong life are you going to risk not taking it?