Tamoxifen I want to say no

In the very unlikely event of being ‘thrown out in the cold’, or having any negative attitude towards your informed decision, you find another specialist who behaves better. There is a big difference between refusing treatment that will categorically make you well and refusing treatment that may help, maybe, with known side effects. Best wishes. 

Thanks @melclarity what you have experienced is what I imagine the cancer will do if it wants to anyhow regardless of taking tamoxifen or not, overall it will only provide about 2 percent increase in five year survival to me this Increases to about 3-4 after 10years and the oncologist had no information  or graphs for after that..I am very uneasy about taking it at all there are so many unknowns and i have a family history of vascular issues, and mental health although they dont currently afflict me i dont want to encourage them and still the cancer can still return..I assume I will still be able to have followup mamagram etc if I refuse the tablets or do u get thrown out in the cold?

@EAA Tamoxifen is predominantly used in pre menopausal women, Aromatase Inhibitors such as Arimidex, Aromasin and Letrozole are used post menopause, unless there is a complex diagnosis. Tamoxifen however can be used for both.

@Red1 I think its a relevant point for sure and you are within your rights to reject the medication if you so wish...my only suggestion would be to be absolutely sure no matter what you decide its best for you and that you feel without a doubt you have done everything in your power to make sure it doesnt come back.

I say this because...I was diagnosed at 43 DCIS ER+, I had a lumpectomy and radiation treatment and put on Tamoxifen. I was on that for 4YRS, I had ZERO side effects, 14yrs prior I had irregular cells on my cervix, surgery and been fine ever since, I had no gynecological issues or anything. I did however have a recurrence in the scar tissue at 47, I had to have another major lumpectomy and chemo being Stage 2, Grade 3 aggressive...all this inspite of all treatment? BUT at least I could say I did all I could. I was pre menopause even with the 2nd diagnosis...chemo threw me into menopause and I ended up with a mastectomy with immediate diep flap recon. I dont like drugs either and am so drug sensitive that chemo nearly killed me...tamoxifen pffft nothing. I have been on Arimidex and Aromasin for 4yrs now and its been harder but the only thing I can say is I can say if anything ever happens again...Ive done absolutely all that I could. I wish I had the power to say NO...Im not doing it or taking it...but after my path I can't gamble with it anymore sadly.

My Mum also had BC at 40 had zero treatment only a mastectomy/reconstruction and passed away 26 years later with an unrelated cancer...it never returned. I don't have the BRCA Gene as many don't 95% of BC is random...so many mutations havent been found yet...we are a loooooong way from solving it. 

So all I can say is unless you try it you dont know how it will be, but if you honestly feel confident that no matter what happens in the future and not take it...you have that choice. 

I wish you all the very best..its a hard road...but my life hasnt been better for where I am right now :) 

Tamoxifen attaches to the hormone receptor in the cancer cell, blocking estrogen from attaching to the receptor. This slows or stops the growth of the tumor by preventing the cancer cells from getting the hormones they need to grow.

M x 

@Millie I thought that Tamoxifen worked by competing with estrogen when the latter was trying to attach to a tumour, thereby blocking the fuel supply and slowing/stopping tumour growth. Which leaves the rest of the body to use the estrogen it produces, unlike an AI which stops the production of estrogen altogether.

The Alzheimers thing worries me terribly. It was one of the questions I put to the doctors in the recent webcast but they didn't answer it. They didn't answer any of them...

Hope you're travelling OK. K xox

My research led  me to simular revelations as Millies, and all the gynecology problems frighten me has I had some close calls with cervical cancer which I believe were related to the contraceptive pill which I refuse to every take again, accessing the public health system for gynecology issues is lengthy too or it was back then and the problems tamoxifen causes there is well documented.
My mum had breast cancer of a simular nature to mine but more extensive, mine is IDC & DCIS 21mm, grade 2 with LVI and no lymph node involvement, treatment lumpectomy chemo and rads, My mum had mastectomy nothing else, she had a recurrence 15 years latter in the scar tissue, this was a new cancer unrelated to the first.

@melclarity
May have some sage advice!
All experiences vary 
Best wishes 

Hi Millie. I said no to radio. My body was too tired from chemo and whilst the radiographer was insisting I needed it, he couldn’t state any percentages as they were so close whether I had it or not. Can I live with my decision and not regret it if I get BC again? Yes. I may get it again either way. Not regretting is the key to your answer.

I said no. Was going to make less than 1% difference to my 10 year outcome. I did a lot of reading. Tamoxifen doesn’t prevent cancer, doesn’t cure cancer, can cause cancer, permanently alter cell DNA, can slow the growth of cancer that feeds off estrogen. There was a study looking at the benefits of giving it to women without BC too see how that effected the likelihood of them getting BC later. Interestingly the study was disbanded and no report released.

I was 42, a fair way off natural menopause. I wanted quality of life, for as few or many years as that may be. To look after the body parts that need estrogen to function. Keep my eyes, brain, bones, etc working as well as possible.

Chemo oncologist said, “you probably don’t have cancer anymore “. Yet he was willing to give me chemo, again for less than 1% possible benefit to my 10 year outcome. I am astonished that something so toxic can be recommended to people in a vulnerable situation for so little or no possible benefit.

There is also interesting research regarding alzheimer's and there’s thinking that the reason more women are affected than men is due to the dramatic drop in estrogen after menopause. Given my grandma ended up with alzheimer's I’m keen to defer that as long as possible. Definitely don’t want symptoms in my 50s.

There are no guarantees with cancer treatment. Balance what you need to do based on your priorities. There might be a trade off between peace of mind, quality of life, quantity of life. 

All the the best to everyone with their treatment decisions. Xx

Thinking outside the box you could always do half dose rate if you are sensitive.