Has anyone decided against Tamoxifen?

Hello I’m a new user and joined because I wanted to get a good opinion from those of you in the same (or similar) situation as me.
I was diagnosed in Jan this year with DCIS and had WLI in Feb followed by Radiotherapy in May. I have an appointment to see my Oncologist in a couple of weeks to start me on my five years of Tamoxifen. I’ve been told that because I have had several cases of breast cancer in my immediate family plus a high grade of DCIS I “need” to take the Tamoxifen to prevent it coming back.
I have read and heard so many conflicting reports of it’s true ability to prevent a re-occurrence and the risk of the side effects seem so high. My mother took it for two years and developed thickening of the womb which led to a hysterectomy as they were worried it was developing into cancer!
This all has me very worried and with all the other awful side effects I’ve read that you’re suffering I’m wondering about natural alternatives.
Has any used natural progesterone creams?

Hi glitterbug,
I’m sure you will be getting lots of different opinions and advice from people.
I made a decision not to take tamoxifen. I’ll be happy to explain the reasons behind the choice I made but would prefer to do that in a private message. Let me know if you would like me to do that.
Magsi

Tamoxifen has been the gold standard for many years in preventing a recurrence of breast cancer. Figures vary, but it is often quoted that the recurrence rate is about a third lower with tamoxifen. I’m sure that there are a lot of factors to take into account (your age, and the likelihood of a recurrence without it come to mind immediately), but don’t dismiss it out of hand. I can understand your fears after what happened to your mum - could you discuss with your onc the relative risks of complications from taking tamoxifen, compared with risk of recurrence from not taking it?

Personally I would rather put up with unpleasant side effects for five years, and have a normal lifespan, than die prematurely from breast cancer.

Hi there

I have been taking tamoxifen now for just over two months. At first I was terrified of taking it but now glad I am as I feel its giving me added protection.The only side effects I have had so far have been a dry mouth. I am lucky that the hot flushes are not too bad.
Before I started taking it I went for a long chat with the BCN who was very helpful.
Best of luck
Alison

Hi glitterbug I am like you a bit wary of tamoxifen as my sister was taking it and though she had no bad side effects she had a recurrance just after 3 years. My onc has said she will put me on it for 3 years then change to another drug. My mother however took Tamoxifen and didn’t have a recurrance in 10 years and died of something different…who knows what to ??? Sorry even morfe confused now?
XX

Hi Glitterbug

Please feel free to call our helpline for a chat with one of our specialist nurses about the concerns you have about taking Tamoxifen. It’s open weekdays 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

Hi Glitterbug

I was one of the unfortunate people who had problems with both Arimidex and Tamoxifen. They both made me very nauseous and caused weight loss so I have had to come off them. I don’t know how old you are, I’m 69, and think that makes a difference. If I were younger I would have really stuck with the Tamoxifen in the hope that I might get used to it. Nowadays the plan seems to be to have 3 years on Tamoxifen then go onto Arimidex for 2 years so this probably lessens the more serious problems with side effects.

Hope all goes well
Val

Hi Glitterbug,

I too am meant to go on tamoxifen once I finish chemo and radiotherapy, but have already expressed reservations to my oncologist. My main concern is weight gain - I simply can’t afford that (already an 18). I was told the only option then was to have my ovaries out and go on Armidex(?). I have read elsewhere on this site that one brand of tamoxifen doesn’t seem to cause weight gain, so am prepared to try that and see how it goes. I also do not want a constant reminder of this year for the next five years.

However, my cancer was positive enough for the onc to be adamant I need to be on something. Do let me know if you find out about any alternatives to tamoxifen or armidex - I dont like taking drugs all the time.

All the best
Sue xx

Hi sue i have been taking Tamoxifen for 8 months since my Mastrectomy last October I have some side effects but not weight gain although I have been prescribed
different brands from different chemists I am a bit sceptical as to its efficiency as I read today that it doesnt have any effect with regard to the BC recurring in 30% women that take it …but dont want to decrease my chances even more by not taking it at all .I am 52 and prior to my dx last Aug was not in the menopause but since taking Tam have not had a period since then …I get some very severe mood swings which I seem to have pinpointed around the time I would have been due one .
Havent really been to;ld much what to expect whilst taking it …have tried not too read too much about it but my main conjcern is my blurred vision …I have been referred to the eye specialist who i see this Thursday 19 june so will see whether its the tabs or just old age !!! thats the cause
Will keep you posted
Maz

Magsi: Just browsing through here and came across you comments about decision not to take T. I am still doing to epi to be followed by cmf and then rads “with hormone pills”, What hormone pills? I am not keen on Tamoxifen as I am post menopausal (9 years) and having had one lot of menopause don’t want another. I am also threatened with Herceptin so maybe T won’t be the one but I would like to know your reasons for not doing it if you don’t mind sharing that with me.

trust you are well, look forward to hearing from you.

Julia
xx

Hi Julia,
I will send you a PM below
M x

I took Tamoxifen for 3 and a half years and stopped it because of the horrendous fot flushes. 17 years later BC came back and am now on Arimidex which is much easier to tolerate.

Thanks Maz - I get terrible mood swings every month already, so the family won’t notice any difference there! How did you get on with eye specialist?

Sue xx

Magsi - thanks for all the info, very useful. I don’t know yet what hormone they are thinking about, but the thought of a second menopause is not something I would opt for. My ten year survival rates are not brill - 40% with nothing, 67% with everything. Will obviously need much more info before I make decision, and then find out how long I get whatever and how it stacks up with the herceptin. Oh if it’s not one bloody thing it’s another!!!

Have third epi tomorrow and then will plod on.

Trust you are well - love to all.

J
XX