Brief history of me…27, dx July 08 with DCIS and multifocal BC in left breast, mast and imm recon, ER+ and no lymph node involvement. Was offered chemo as adjuvant treatment or Tamoxifen and Zoladex as an alternative, after many sleepless nights went with the latter.
Saw my onc on Monday and got my first lot of Tamoxifen, it’s now Thursday and I keep thinking of excuses to put off taking it. There seem to be loads of you on here who have had horrendous side-effects on it so that is putting me off.
How long does it take to notice any effects? Also I wasn’t given a pregnancy test before getting the prescription and the pharmacist seemed surprised at this. Now worried about that too as my period os overdue but then my periods have always been irregular.
Please don’t be be put off by others peoples bad experiences. Some people are said to have bad side effects but this can be the case with lots of drugsand it affects people different ways. Just remember that this drug is helping to save your life, PLEASE take it. If the worse came to the worse you could come off it, but don’t leave it in the box.
I have heard also that side effects can come on early, or weeks or months later. I myself have been taking it for 14 months and apart fom a few aches and pains and night sweats, I have been pretty lucky. This drug is not the always the monster it’s cracked up to be.
Can’t answer on the pregnancy side, I am way past that.
Yes I left mine at the chemist for a long while before I had the courage to pick them up. I have been taking them now for approx 40 days AND NOTHING HAS HAPPENED so far.
I think that they are worth starting because if side effects are too bad you can always stop. Hopefully you will be OK.
Just to support Normski’s comment: you’ll always hear the bad news, but few will bother to report that they experience few, if any, side effects. I’ve been taking it since January and at first I blamed it for all the aches and pains I then experienced. Further investigation revealed arthritis in my spine (giving rise to stiff, achey joints) so it wasn’t the Tamoxifen after all! Why not ask about the pregnancy issue, and once that’s been sorted, try the Tamoxifen and see how you get on?
I have been taking it for about a month and no side effects so far.
Like you I was putting it off ,then I just bit the bullet so to speak.
I have heard of many women who get no side effects ,the ones who post on the forums tend to be the ones who have problems.
Check out the pregnancy risk and then why not give it a whirl and hopefully you will join the no side effects Tamoxifen ladies!
Sorry you have to make the choice about this drug.
I have been taking it the same length of time as Margaret, I started off getting aching thumb and arm, then the flushes, although they wern’t bad, but all of a sudden both the ache in my thumb and the flushes stopped, I get no side effects now.
Please dont be worried about the tamoxifen. It was quite a shock to me when i started with the hot flushes after 2-3 days, but you quickly get used to them and now 8 months on I hardly get any and they are just mild. Its worth a try as it gives you a slightly better prognosis. I have a friend who was pre menopausal and had no symptoms at all while taking Tam. So you may be lucky.
I’ve been taking Tamoxifen for nearly a year now. Had a few hot flushes right at the beginning but only get them very occasionally now. I also haven’t had a period for 7 months which is a bonus. Not sure if they would have stopped anyway as I am 53 but I was pretty regular before the Tamoxifen so I think it is that. It’s worth a try as not everybody has problems taking it.
Thanks ladies. I did bite the bullet and took my first one this evening with dinner. Contrary to my expectations, I didn’t explode/ throw up etc so time will tell about the effects. One thing to keep in mind is whether, as someone said, symptoms are actually attributable to meds or not. The other day for example I got really hot and sweaty on the tube, probably because I walked too fast and had too many layers on (!), but I bet if I had taken a tablet the night before it would have been, ‘oh God, the hot flushes are starting already,’ etc… paranoia and cancer diagnoses are unfortunately bedfellows…
Think I was being pretty silly about the pregnancy risk too as had some mild bleeding the other day with sore nipple in my good boob which is what happened last month as well and on good contraception so harldy likey…just another excuse!
Thanks for your advice, will keep this thread going with updates on side effects etc as well as when I start Zoladex in 6 weeks…
I know where you’re at. I’m 33, I am doing chemo because I had 2 tumours and one was triple neg so that’s the treatment for that one but the other breast had another tumour which was hormone responsive so I am both triple neg and hormone positive (at least neither were her+ or I’d actually have every treatment going!)
I don’t share the point of views expressed, like you I’m concerned about hormone treatment, not because of side effects though but because I’m 20 years away from the natural menopause like you and I can’t help wonder what the effects of shutting down so early will be. Because I have done the chemo I am seriously considering refusing the tam or zoladex (or both if they suggest both). The chemo hasn’t stopped my periods yet so I don’t think I’m going to be menopausal at the end with only one dose to go. It’s not an easy decision and I do think it’s much easier to accept if you’re in your 40’s 50’s as it’s naturally closer and we’re all going to do it anyway.
One thing I would say is keep fit, make sure you’re getting *plenty* of calcium and if you can do an impact sport like jogging as it apparently makes a huge difference to bone density over time, ie avoiding osteoporosis. My mum had all but half an ovary removed on her early 30’s and has been through the whole HRT no HRT thing and did suprise me this eve when she expressed concern at me shutting off the hormones now. I don’t think she would in my shoes which is eye opening but I have done chemo and you haven’t.
All I’m saying is you’re in your 20s not your 50s and it DOES matter so keep your calcium etc, talk to your GP about diet to help counter the effects of the lack of hormones, we’re complex beings.
I’d have done the same as you though and taken the pills, and argued with my mum, but I’d have argued with the onc too
I have been taking tamoxifen for 7 months and in my experience it is doable. Hot flushes are not too bad and the odd off day is better than having those words said to you! you have breast cancer.
I hate what this has done to me and want my life back but at least we are still here and thats the main thing!!
Angie, you are quite right, the fertility issue was a big deal for me and a large part of the reason I chose not to have chemo was because nobody could give me any sort of assurance that it would not make me infertile. I was told, ‘well, your ovarian store will be reduced but at your age, there should be so many eggs in there that you should be fine’…forgive me, but ‘shoulds’ are not what I want to hear when it comes to something as huge as whether or not I will be able to have children.
From what you say though, you are hesitating over tam and zoladex for this reason? It’s my understanding that hormone therapy deos not affect fertiity, in fact zoladex, since it puts your ovaries into hibernation, effectively conserves your egg store for the duration you are on it. It’s also used to protect your fertility while you are on chemo for the same reason so I am surprised you were not offered this at 33.
My onc offered to refer me to a fertility expert because I laboured this point with her for so long, perhaps you could ask for the same? I do think that sometimes oncologists forget the concerns that pre-menopausal/ younger women have about fertility. I suspect they rarely deal with this demographic and therefore go for the ‘one size fits all’ approach.
I hope you don;t mind me mentioning this in a thread, if you would rather discuss privately, send me a PM.
I have been taking it for nearly 5 years and no side effects at all. I think many if not most do not have side effects, its just that they don’t post this fact on discussion boards (as its a non-topic!)
You must definitely take it. When it was first discovered it was a huge scientific breakthrough as the survival rate shot up, so don’t miss out on this chance to stay well.
hya cassie i have been on tamoxifen for about 2 months now and all i have had is hot flushes i recently went on my hols to menorca and suffered hot flushes there but i thought it was because the weather was too hot but since being back for last 4 days i am having them all the time so it wasnt the hot weather but must be the tablets i can just about cope with them for now so please take them if they weren’t needed for treatment they would not be offered to you i too did not have chemo as i have a really bad chest and the risks are too high with infections and i have started radiotherapy on tuesday and having my ovaries shut down too in 2 weeks so good luck on the tabs x
You may find it useful to have a look at the BCC fact sheet on menopausal symptoms as there is some information about how to relieve some of the symptoms some of you are experiencing, it can be found by following the link below:-
Hi Cassie, I have been on zoladex and tamoxifen for nearly a year now. I’ve had very few side-effects. Mild hot flushes are about the worst of it. Best of luck with it and take care. x
I was on Tamoxifin from Feb 07 to Jan 08 and had no side effects at all (started to wonder if the tablets were actually working). Had oopherectomy (preventitive treatment as BRCA2 gene carrier) and onc then put me on Femara, don’t know which one to blame for the hotflushes and aching joints!
I was put on Tamoxifen in April and stared at the packet for over two weeks terrified to take them. Was pleasently relieved when I was ok !
The only effects I get are hot flushes but I was getting them with chemo.
Funnily enough I found the flushes were better with brand APS and others on here have mentioned that.
Best of luck
Alison
