I have dcis and just had a mastectomy. I am 51 and pre-menopausal. My consultant told me last week everything was fine no more treatment neccessary
in his opinion. Next day he told me otherwise after the md meeting. I am devastated and really feel I don’t want to take this drug really scared about womb cancer and hair loss I haven’t got great hair at the best of times please help me by sharing your experiences of tamoxifen. I have only heard horror stories so far
Lots of love to everyone xxxxxxx
FRom Normabev
Hi Norma, please look at www.cancerbackup,org.uk and look at what it says about tamoxifen, no one wants to be on drugs, but the way i see it, well, if it helps to keep the cancer at bay until i get the ovaries out, well, i wouldn’t miss a day of taking it, i don’t have very thick hair, and ok, its hard to tell if i have lost any, but don’t think i have, please talk to someone as it will make you feel better
Alison xx
Hello Normabev, I am 49 and premenopausal, I have had a mastectomy and full clearance of the lymph nodes. I have also had 4 epi and 4 cmf chemo which ifinished in July. I have been on Tamoxifen for 2 weeks now with very little side effects, a few hot flushes which Ihad during chemo anyway,so far so good don’t be afraid talk things over with your oncologist and give it a try who knows you may be one of the ones with very little side effects.
Love Carolyn159
Hi Normabev
Im 36 and started on Tamoxifen about 3 months ago, im prone to putting on weight and had been working hard to loose some weight that i put on pre-op, also my hair was starting to grow back after loosing it during chemo so i was petrified about taking this little tablet but apart from the occasional rise in temp which is secondsd i have had no effect from it, im sure there are many on this web site that have hardly any effect on it, not every one does so why not try and see. These tablets are a potential to keeping cancer away so i feel lucky and grateful to be taking it.
hopefull other people will come forward and put your mind at rest, good luck
Tracey
xxx
Hi Normabev, I’ve been on tamoxifen for 1 month and so far no side effects. I was really concerned about the side effects too. I’m oestrogen receptive 8/8 though and really need something. Ive read that DCIS may not need a drug like tamoxifen but cant remember where I read it. I would get a second opinion. I wouldn’t take the drug if the evidence wasn’t there.
Not sure if my ramblings help. You have to do what you think is right.
Love Julie X
Im 30…been on tamoxifen since the 2nd of August. Not had any major side-effects at all…been fine on it so far. Im er and pr positive so need the tamoxifen to do whatever it is that it does…cos its all magic fairy dust to me…as long as it works then jobs done! Ive got a full head of thick hair now…3 months post chemo so its all good. I was told that the tamoxifen would induce a menopause and thats what was needed for me…which fair dos not going to argue. I wouldnt stress over every side-effect that you read about with the drug…most of them are all worst case scenario just to cover all bases…same as if you read the leaflet that comes with paracetamol.
If we all didnt eat/drink/take stuff that may cause cancer…wed all be dead from either starvation or dehydration…thats the way I look at it.
If the pills will work for you…my choice would be to take it…the alternative…well im not going down that route!
Hi Normabev,
I had a very similar diagnosis and experience to you - one moment the surgeon’s telling me I can go off and plan a family and the next the oncologist is putting me on tamoxifen. I was extremely reluctant to take it at first and dedicated a couple of months to researching as much as I could take in about it. Eventually my resistance was broken and I started taking it two weeks ago. So far almost no side effects - just mild sickness - but they might crop up.
As Alison says, check cancerbackup.org, it has very good info, I found it reassuring after all the horror stories (and a few conspiracy theories)…
LoveJ
I was diagnosed last year with DCIS and invasive cancer, very strongly oes and pros +. I’m 48 and was pre menopausal when I was diagnosed. I’ve had a mastectomy with removal of 14 lymph glands, 6 cycles of chemo and 15 sessions of rads. I finished my rads in Feb and staretd tamoxifen the same month. I’ve had no side effects at all from the tamoxifen. I’ve been back at work since April and feel really well. Tamoxifen is a very good drug when it comes to preventing BC from returning. My hair was really thick before treatment and is growing back just as thick- I’ve currently got braided extensions in it as i got sick of the “chemo” hair, and I’m going for dreadlocks next. Read up as much as you can about tamoxifen. Not everyone gets all/any of the possible side effects. By the way, I’m a vegetarian. Both my BC nurse and acupuncturist told me that vegetarians don’t tend to have menopausal side effects when on tamoxifen.
Geraldine
Hiya!
Been on Tamoxifen for several months now. The first week or so was a bit rough, but it soon settled down. I’m 46. Get slight hot flushes, but bearable. Get stiff joints, but I’m on high doses of Ibuprofen which helps a lot. Do have several menopausal symptoms, but nothing I can’t manage for the most part - tired a lot which is hard. I’m on Nolvadex (a purer version of Tamoxifen than the generic and most people seem to find this brand ‘kinder’).
Losing or thinning hair on Tamoxifen is a rare side-effect, so I shouldn’t worry unnecessarily.
Tamoxifen can mimic the menopause so if you look at menopausal symptoms, thinning hair is often mentioned - along with many of the other nasties that come from depletion of oestrogen.
I’m 8/8 ER+ and PR+ and Tamoxifen is my ONLY treatment after my mastectomy and since I have LCIS in my remaining breast, I’ll take it no matter what it does to me.
My advice (for what it’s worth) is to take it if it offers any degree of help – you can always stop.
Best of luck with whatever you decide,
love,
Jacki xx
Hi there. Yes, I too was worried about Tamoxifen. I haven’t had my surgery yet, let alone started Tamoxifen, but since I was diagnosed a week ago, I have been researching Tamoxifen. Of course, I scared myself silly and decided that I was going to end up with no breasts, no hair, a dry vagina, hot flushes all day and all night, hugely fat, and bad tempered! I have since realised that I will be very unlucky if I get all of those side effects. Most of them only occur in 25% of women (that’s simplifying things - go to cancerbackup.org as others have said). It’s got good, proper info about side effects of Tam. What is sure, though, is that the research says that recurrence is lowered by something like 40% if you take Tam. I’m taking that, baby.
I hope you are feeling better about things.
Love
Emma
xxxx
Hi Emma, so glad you went to that site, it was recommended to me by my surgeon and i find the q and a part great too, some say ignorance is bliss, not in this case though
lots of love
Alison xxxxxx
Yes, alison, it’s a good site. My first reaction when anyone recommends anything is to shut my ears and/or get really badtempered, stick my fingers in my ears and sing “Nah-nah, nah-nah!”, but actually people can have some good advice!
Lots of love
Emma
Thanks everyone for the info on tamoxifen whata difference a day makes! I am so grateful and will check out recommended sites. Lots of love to you all
xxxxxxx
From Normabev
Hi there. I think the decision to take tamoxifen or not is a very personal one and as others have said the best thing to try to do is find out as much information as you can and then make as informed a decision as possible. Hopefully the information you find on this site will be of help…I know I have found it very helpful.
I have been on Tamoxifen (Nolvaldex) for nearly 3 years following a mastectomy due to high grade DCIS. I was 40 when I started it and was really given it as precaution. I have not had too many side effects from this and am happy to take this as I couldn’t face the thought of getting DCIS in my other breast. I am having some menopausal symptoms but may be I would have been having these anyway - who knows!! I think sometimes it is easy to blame everything on the medication you take and I know I am guilty of examining everything in detail and trying to find a cause or reason. I have decided to be a bit kinder on myself and try to remember that I had days I felt a bit grotty or off before this all started so it can’t all be to do with tamoxifen.
Having said that I think it is the best decision I have ever made as things have been very rudely (and abruptly) put into perspective for me as my mum has now been diagnosed with HER2 breast cancer and has to have chemo, radium and herceptin as well as arimadex. There is some suggestion there is a family link even though I got my cancer first and I certainly don’t want to run the risk of this happening in my other breast. Having struggled through my treatment it is very hard and distressing to see mum coping with so much and I would take anything my consultant said to avoid the same. Call me naive but I would rather be safe than sorry…!
Thinking of you all out there.
Debx
hi to all, been on tamoxifen for 2months now having the hot sweats and flushes hairs growing back bit slow to grow on top of head …noticed well my daughters noticed i seem to have spouted a fine down on the sides of my face weird huh? due to see onc in sept so will ask him whats going on n will i get a beard(sobs) thats all i need haaaa part from that i seem to be coping with this drug plus i had the genetic test to see if i have the gene that can be passed onto my 2 girls (only got to wait 2 yrs for the result) tsk tsk …caroleann
Hi normabev
I am 35 yrs old i have had chemo and am about to start radio and have bin takeing tamoxifen for about amouth i get hot flushes and that is it .I think you should keep on takeing it as it dose help in the long run.
Good luck from tracy
Hi all, have been on Nolvadex-D for three months now. I too had it pointed out that I had sprouted a fine down on the sides of my face and, worse, on my chin. This is particularly galling as my head hair is still sooooo short. I had previously read on this site about Boots facial hair removing cream and purchased this. However am frightened to use it as have sensitive skin. I think I may have to as chin hairs seem to be growing in length. As if we didn’t have enough to contend with. Love to you all, Maggie
Hi Maggie, instead of using hair remover cream, maybe it would be better to have it waxed, ok, its a bit painful, but it will last a lot longer, hope this helps
Alison xxxx
Does anyone know if we can take HRT when we start our proper menopause if we start taking Tamoxifen when we are premenopausal? I would think we can’t, as the last thing our breasts need is extra oestrogen, isn’t it? Or perhaps I am trying to be too clever…
Emma
xxxx
If you have oestrogen positive tumours then HRT is off the menu for life!!!