refusing tamoxifen

Just really wanted to gather opinions here -
Am discussing tamoxifen tomorrow with bcn - have been advised to take it for 5 yrs following WLE and SNB and rads(no nodes,clear margins,ER+ but don’t know HER status, idc 2.4cms grade 2 with intermediate DCIS)…am 50, married with a 12 year old son.
I have a very strong gut feeling to decide against taking it mainly fuelled by a long history of OCD, currently managed by me without any drugs - this balance I feel is pretty precarious and I am frightened of tipping it - living with OCD is pretty grim and I do struggle with it still. I am afraid of changing how I am now,because I feel I’ve reached a safe place - I am pre menopausal and would prefer to slip into menopause naturally without it being hurried along - things like possible weight gain would completely throw me as I’d feel out of control. I hope you don’t think I’m being over dramatic,truly I’m not. I want to do the right thing ! Thnks in advance for any replies xxchipperxx

I was IDC 2.2cm grade 1, 1 intermammory node affected but no lymph nodes involved, was er+ HER2 neg. Had WLE and rads and have been on tamoxifen for 16 months now. I hvae not gained weight, in fact I have actually lost a bit over teh last year but not putting this down to the meds. I have had approx 5 hot flushes in the whole time I have been taking tamoxifen I still get periods albeit they are a bit erratic, I don’t think that I suffer terrible mood swings but others may tell you differently. The only issue I have is the disturbed sleep and some weird dreams (not scary just weird) and some leg cramps.

I can understand you being fearful of tamoxifen as the list of potential side effects is quite long, but not everyone gets them.

thanks lilac ! yes, I know lots of people don’t get SEs and my bcn assures me of this, I do try to keep an open mind and try not to look for negatives, but a lot of people have posted that they have suffered quite badly. I guess it’s a question of weighing it all up - not easy though !

I agree, very difficult to weigh up the various issues and make the decision. Due to the sleep issue I have considered coming off the meds but keep coming back to the ‘but what if’ question.

Good luck in making your decision.

thanks - am hoping for a sign or divine intervention ! my husband has said that he’d prefer me to have it, but obviously my decision after I’ve weighed it all up

Hi chipper, I had a mastectomy one year ago after lumpectomy failed, also had some lymph nodes affected and removed. Went on to have chemo and rads now on tamoxifen for 5 years. I have been taking tam since March and apart from cramps in the night and a few hot flushes I seem to be ok, I was worried about the weight gain but I watch what I eat and so far so good. I can only post how it affects me everyone is different, I sometimes am a bit weepy but think this is when I have my down days as we all do when we think about what we have been through. Good luck in what you decide to do it has to be your choice junieliz

thanks junieliz xx

Hi Chipper
I decide not to take tamoxifen, and there a few ladies on here who made the same decission for a variety of reasons. Here are mine: -

Dx Nov/Dec 07 with lobular cancer Had a mastectomy Dec 07 and no lymph node involvement so no chemo. Due to very close deep margins I had a 5-10% chance of localised recurrance on the chest wall and I was offered rads to reduce the risk to 2-3% The chance of general recurrance was 7.9% As the cancer was eostrogen receptive I was offered tamoxifen which cuts the risk of recurrance by a third which in my case was 2.4% bringing it down to 5.6%.
I was very anti Tamoxifen from the start simply because I dont take anything apart from the normal painkillers and was only on the pill for a few months 25 years ago and have never done HRT. The onc said I had plenty of time to think about it and decide at the end of rads and if I wanted I could give it a try. He also pointed out that my quality of life was more important
I read quite a bit about it and it all seemed very positive and I did try it for 12 days the day after rads finished. I had headaches, slight bleeding and period type pains and slightly blurred vision but the main thing was I felt like an old lady if that makes sense, just no bounce, no energy or enthusiasm. The day I stopped I had gone to Barts for physio then onto M&S Marble Arch I then needed to walk to Oxford Circus and I had to really force myself. I just wanted to go home. So no more and 4 days later I felt happy for the first time.
These might not be very scientific reasons but I am normally a bouncy person, happy and fairly energetic and on tamoxifen I wasn’t. I will admit that i didn’t give it a chance. What I also didn’t like was the idea of taking it for 5 years for ME it was a constant reminder so I took the pack to the local pharmacist and handed it over.
There were other concerns I had like the increase risk of of cancer of the linning of the womb and joint pain.
I have looked at other ways of reducing the eostrogen buzzing around my body because despite being 54 I haven’t gone through the menopause. So I try to have little alchohol and keep my weight down. there are studies which show that regular exercise can cut recurrance by the same amount, so I go out most weekends walking.
At one of my check ups the onc. said ‘you do know that with your stats one woman in 40 would benefit from taking Tamoxifen’ I pointed out that 'Yes they would but 39 wouldn’t and of those 37 would be taking it unnecessarily with all the side effects and two would still get a recurrance.
Well I hope some of this is of use to you. Its such a personal decision isnt it?
All the best,
M

HI ALL
I am having my own battle with the dreaded Tamoxifen,
hot flushes, no energy, tearful bloating, to name but a few,
another thing that I have noticed is stomach ache which comes and goes, im sure the Tamox is causing this as I didn’t have it before.
I have been on it now since 12th March diagnosis day.
I want to stop taking it , however my dear husband wants me to talk to someone first, as he’s worried if I stop taking it, the dreaded C
will rear it’s ugly head again. I am very confused about all of this,
but don’t want to feel like this for 5 years. xxxxxxx

1 Like

magsi,thank you - that was a greatly helpful post and I appreciate it…
I just don’t want to feel not like me,that would really do it for me…
libby - am sorry that you are having a rotten time with it, and thanks for posting your views

Chipper, like most things it’s a very personal decision. I was 100% ER positive so made sense for me to give it a go.

Have been on it since 1st April and havent put on any weight and have no side effects at all ! maybe I’m just a bit weird…lol or maybe it’s not working ! eeekk !

Different people react in different ways to treatments and drugs and you really don’t know how you will be untill you try it. I’m also on the cheapo CP Pharmaceutical brand and not the nolvadex d,as some people react better to different brands. Just wanted to let you know that’s it not all doom and gloom for everyone. Good luck with whatever decision you make .

Sandra x

Hi Chipper

I refused to take Tamoxifen. My two main reasons were: I wanted to try for a child (I was 37 at diagnosis, just married a year, no kids yet) as soon as possible and felt Tamoxifen would interfere with that too significantly. I also, like Magsi, didn’t want a daily reminder of the dreaded cancer experience for the next five years.

So I didn’t take it. I was given a 40% chance of the cancer coming back at original diagnosis, reduced to 30% chance with chemo and rads. The Tamoxifen would, if I remember rightly, have reduced it to 20%.

I enjoyed the next five years cancer-free. Thought about it daily for about the first two years but then I can honestly say that after a while I didn’t think about it every day. Life did return to normal. And I had a beautiful daughter in 2006 who is now just over two and a half and brings me so much joy.

Then summer 2008 I was diagnosed with spread to the bones. My onc immediately put me on Tamoxifen (I didn’t refuse this time!), but when Herceptin tests came back positive he took me off the Tamoxifen and put me on Herceptin. This makes me think a couple of things: 1. if I’d taken the Tamoxifen in the first place would it have spread to my bones? There would still have been a very substantial chance (20%) that it would have. And 2. if my onc could take me off it so easily (I was only on it for a few weeks), how effective is it really? Or is it just something you take to try to keep the cancer at bay and isn’t really that effective in actually treating active cancer? I just don’t know.

Anyway, writing this now, do I have any regrets about not taking the Tamoxifen for the last five years. Honestly, no. I thought about it a lot five years ago and determined that if the cancer did come back I wouldn’t beat myself up about it. I don’t believe that it would have stopped the cancer spreading. It might have stopped the cancer from rearing its ugly head while I was taking it … but I was cancer-free without the Tamoxifen anyway. I believe that the cancer spread at time of, or even prior to, original diagnosis, and that those cancer cells survived chemo and simply lay dormant. If they can survive chemo, then I’m pretty sure that surviving Tamoxifen would have been a breeze.

Oh, I truly appreciate that this is an agonising decision for you having been there myself. Try to project yourself into the future and feel that you will be happy with the decision, whatever the outcome.

Best of luck.
Alison x

Alison - thank you and Sandra too - I really appreciate your points of view

People often only post when they have had a bad experience of a treatment so many more may have had no or very few side effects.
I was diagnosed with stage 4 cancer from the very beginning. Tamoxifen was my first treatment and put me into remission for approx 16 months before it waned. I’ve had a couple of other treatments since then but nearly 6 years on from diagnosis at the time of writing this I’m still in remission.

thanks belinda,that’s true,bad experiences usually get reported and good ones not mentioned ! Am glad you are in remission

Hi Chipper

I have been on Tamoxifen nearly a year. I am 48 and was premenopausal prior to chemo. I also suffered with anxiety for 25 years. Apart from a bit of nausea at the start I feel great on it now. My anxiety symptoms have almost disappeared, I’m sure they were related to PMT or raging hormones. Almost forgot have lost over half a stone since I started eating sensibly in May!

Hope you come to your decision easily.

Best wishes Judy

thanks Judy - that’s encouraging to hear !

I have been on Tamoxifen for just over 4 years. I have lost weight since going on it and haven’t had any negative side effects. I used to get spotty once a month and had difficult periods but my skin is a lot clearer and my periods are very rare. Rightly or wrongly I have thought of it as a bit of added security and the idea of coming off it and taking nothing worries me far more than taking it does.

Good luck with making your decision.

HI Chipper

Have you thought about trying tamoxifan and seeing how you get on? It would seem to me that anything that increases our chances shouldn’t be dismissed too easily.
Elinda x

salanns -that’s a nice positive post-thanks and Elinda, yes,I have thought about trying it out -honestly I have given it so much thought and am certainly not dismissing it too easily - but that is something I will consider. I’m hoping for some kind of definite thing to strike me !