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Anyone decided not to start tamoxifen cos of potential side effects?

33 REPLIES 33

Re: Anyone decided not to start tamoxifen cos of potential side effects?

I think it is important to feel happy enough with your treatment choices as if you are really against something then you will probably develop all kinds of symptoms as a reverse sort of placebo effect. I am interested to know whjy the original psoter is so vehemently against Tamoxifen.........I never liked the idea of hormone treatments but decided they made sense for me and my cancer and future so decided to take them and work with them, only thiong I am struggling with is hot flushes on Letrozole but that is all and I did not have any on menopause as I had so much oestrogen floating around!! So in a funny way they are comforting as it meanss the hormone blocking effect is doing their job.
But I think you do need to be happy enough with it to take it at first and if not find out why or find an alternative, that may or may not be as effective but is better than nothing (Indole 3 Carbinol haas ben shjown to block hormone receptors in the same way as Tamoxifen but this has not been validated in clinical trials only in research and observational studies)

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Re: Anyone decided not to start tamoxifen cos of potential side effects?

well said cornishgirl.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

Hi Ndean, i took tamoxifen for 2.5 yrs before being swirtched to an AI and also had no significant SEs to speak off with this hormone therapy, much like most of the other ladies here its been very do-able for me, please always try and remember that people only post about troublesome SEs with some of the cancer treatments when they personaly are haveing a difficult time of things and that those of us (and i suspect a vast majority of people) have none or few SEs so are off liveing their lives and have no need to post. Id say like the other ladies here in that just give it a go ,and see how you get on , you can always stop taking it or try swirtching brands first if you find it troublesome , but hopefully youll find you will do well on this drug too, Tamox is still classed as the wonder drug for BC since its induction and has no doubt saved many peoples lives, so good luck with it.
Regarding Cancer Active, i just wanted to say that i agree with Zeppa in that personaly i have always had some strong concerns about this site. I think some of the information on their website is quite inaccurate. Some is misleading. Some even possibily dangerously irresponsible. (Sorry Sasha this is not aimed at you ,but is just my own personal opinion)
Ive done a fair bit of research into ALT approaches over the last 5 yrs and whilst i whole heartedildy agree with makeing our own choices in reseraching all the options out there i would only advise people to carefully pick their research scorces carefully ,make sure its backed up clinically ,and dont believe everything you read online unless its from a large reptuable cancer organisation. Natural doesnt always mean natural, and natural doesnt mean no SEs , if something has no SEs then it has nothing in it to work, Likewise once an ALT treatment is proven to work it is no longer called ALT but medicine.
A bit of quick research on Cancer Active and i think the charity may not be quite as squeaky clean as it might seem, am sure Chris Wollams intensions are very good but if you dig a little further on the site he includes a link to his natural selection shop , which sells products from the controversial Joe Mercola . You can find more about cancer active and its busisness links and accounts here amongst others.
http://majikthyse.wordpress.com/2012/04/17/charity-begins-where/
Chris Wollams amongst others i believe is also not a fan of the Cancer Act , which makes it a criminal act to to advertise to treat cancer. http://www.legislation.gov.uk/ukpga/Geo6/2-3/13/section/4
Its al about individual choice at the end of the day, and its up to us all individualy to make those choices, i know big pharmaceuieticals make huge amounts of money out of people wiith cancer thats a fact, BUT likewise ALT is Big busisness too and it may be a surprise to most people that ALT makes as much money in a yr as cancer research does!

Good Luck Ndean with giveing the Tamoxifen a go, am sure you will do fine pet.
Best Wishes everyone,
Linda

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Re: Anyone decided not to start tamoxifen cos of potential side effects?

Great comment Jellipops I agree 100% 🙂

Re: Anyone decided not to start tamoxifen cos of potential side effects?

When I started my 5 year course some 8 yrs ago, I reseached a bit and conclused that, putting it very simplistically , hormone positive cancers feed on hormones, tamoxifen attaches to any cells instead and blocks the attachment of these hormones, helping to stop cancers coming back. With that understanding I embraced the Tamoxifen and SEs as being just what I needed. Yes it brought on my menapuase, but I was 48 so not too early, and we all have to go through it sometime! Only serious SE was a nasty polyp in my womb, but all sorted. Hardly noticed when I stopped taking it.
Sadly I seem to be susceptible to cancer, have had Hodgkins lymphoma and now a new IDC I the other breast, hormone negative. Genetic testing awaited. And I wonder if without The Tamoxifen I might have been more unlucky...
Choice is always up to the individidial, and I find that if I can have a positive, simple understanding of why it will work, it helps a lot. Having found out about the hormones I also try to reduce other hormones in my diet.
i'm sure you will come to a decision that you are happy with, feeling positive about ourself is one of the best things we can do!
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

Well said happynipple.
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

Hi everyone
Im a newbie on here..I was diagnosed with BC in May had lumpectomy and sentinal node biopsy..I am having radiotherapy now and will finish next week.I have been taking Tamoxifen for about 3 weeks and the last couple of days can't stop crying and feel like I have nothing to look forward to anymore.I am such a positive person normally and think this is the tamoxifen kicking in.....I am also dreading putting weight on 😞 Oh the joys of this awful C word!!
Kate x
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

HI Nicola,

I was on Tamoxifen for 5 years. The side effects I experienced were: very mild hot flashes, (that I the beginning, I mistook with somebody putting the radiators on at home); facial hair, (as banal as it can sound, this was, and still is very distressing for me); itching and, thickening of the lining of the uterus. When I was on my third year of Tamoxifen, I started bleeding again, I was very worried and, I had a hysteroscopy to remove a polyp. The gynaecologist was concerned about the thickening of the uterus although, she said it was normal with women on Tamoxifen. Now, after a prophylactic oophorectomy, I am on Letrozole. My point of view is that all drugs have side effects. I am pro western medicine. I think that the drugs used in conventional medicine, (even if they are involved in financial interest), are better research and, the side effects better known, which in my opinion, easier to control. I think that complementary therapies, and the so-called "natural products" are very misleading. They also have side effects, which are not well research at all, their claims on their benefits health are not well documented and also, they are part of a very profitable industry just as the conventional drugs but, using systems that in my view, are far less transparent in how they conduct their studies, their trials and so on. Regardless than, cicuta is also very natural and is poisonous.

Off course it’s very scary to read about the side effects of the treatments we have to go through. It’s very normal to have doubts and trying to make the best decision for yourself. I think is a very personal decision, some people decided no to take hormone therapy and others do take it. It’s up to you but, as I said, every drug has side effects even the so-called “natural”. Tamoxifen has proven to be a very effective treatment for those with hormone driven cancers, if the “natural” alternatives were so effective as Tamoxifen has been the would have been used as part of the normal protocol and, they would have changed the cancer statistic which they haven’t.

xx
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

Back to the point of the side effects of tamoxifen, I was 40 when first diagnosed with grade 3, 1 node, er+. on tamoxifen for 2-3 years, had very heavy bleeding and was on course for hysterectomy.

Then diagnosed with extensive bone and liver secondaries, personally, if I hadn't taken tamoxifen, I would be blaming myself for my current prognosis and the guilt I would be feeling for my kids would be immense.

Yes it is a choice but tamoxifen is a proven treatment, I was unfortunate it didn't work for me.

Good health in whatever you choose.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

My understanding is Cancer ACtive was created because the founder´s daughter was terminally ill with cancer and outlived her prognosis by many years by taking an integrative approach to her treatment.
I am not upset with you but thanks for saying something!! I jsut think it is odd that people are so suspicious of a small charity instead of the link between the drugs business and doctors and the health service - for me both have their place.....but suspicion of doctors and standard drug manufacturers seems taboo!!
Natural substances are not normally clinically tested as there is no funding for it and investment cannot be recouped as you cannot patent natural substances.......but there are often numerous rigorous observational studies for some of the so called "alternative" approaches

Re: Anyone decided not to start tamoxifen cos of potential side effects?

I don't mean to attack you personally, Sascha. As for whether the shop and the site are linked, there seem to be other opinions out there. I have the strong impression they are in this for money, but I could be wrong. But it is for everyone to decide for themselves.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

I don't mean to attack you personally, Sascha. As for whether the shop and the site are linked, there seem to be other opinions out there. But it is for everyone to decide for themselves.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

If you read it carefully you will see it is not their shop, they simple connect you to a reputable source because of all the dodgy sites out there on the internet.
I was not advocating anywhere that anyone stops treatment for cancer!!! In fact I am feeling really attacked simply for trying to help someone who might benefit from Indole 3 Carbinol if they do not take Tamoxifen, which they stated themselves they did not want to do so to my mind I3C is better than doing nothing hormone wise.
I would add that I did not put any emotional pressure on anyone to take it which is somewhat different to the pressure I perceive on here for someone to take it.
For the record I am pro choice and that is it. I am taking the standard hormone treatment myself. But if someone does not want to take it or feels so unhappy taking it what then? I decided to try it and see how I got on, so far so good for me. Many others I know are not so lucky esp with Tamoxifen.
I have done huge amounts of research and discounted a lot of the grot but there ARE effective adjuncts or alternatives out there as I think it is vital to never forget that cancer is mega big business for the drug companies, not just for the cancer drugs but for all the ones that go with it! Each patient on one course of chemo costs a FIVE FIGURE SUM in chemo drug costs you know! Add that up per year PER NUMBER OF CANCER PATIENTS........

Re: Anyone decided not to start tamoxifen cos of potential side effects?

Sascha, I had a quick look at the cancer active site and they do sell stuff - they have a shop where they sell Indole 3 Carbinol. They say in their blurb (not in the shop) that it can reduce the need for Tamoxifen, which they say is bad news for Tamoxifen's profits. And they say they do not claim that any one treatment stops cancer. That looks suspicious to me - firstly, tamoxifen is not expensive, secondly they sell the Indole 3 Carbinol themselves, and thirdly they are trying to create the impression that the only thing they care about is our health.

I might be mistaken because it was only a quick look, but I don't understand how they can be said not to be selling anything if they have a shop.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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?
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.

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Re: Anyone decided not to start tamoxifen cos of potential side effects?

(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.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

And I intend to call the helpline

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.

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Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.
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Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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.

Re: Anyone decided not to start tamoxifen cos of potential side effects?

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

Anyone decided not to start tamoxifen cos of potential side effects?

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