Hi, just curious if anyone has said no to taking tamoxifen??. I am terrified of the idea of taking it and cannot see past the array of side effects it can inflict..I mentioned to the onco that I wasn't going to take it and was met with some resistance..and a bunch of figures about recurrence..and sent away to rethink my desision..I have a followup appointment in a few weeks..I feel like a naughty school kid atm, but I am still reluctant to take tamoxifen.

Hi Red1,well I think chemo is way more dangerous and toxic than Tamoxifen! My friend took Tamoxifen for 5 yrs and had no side effects at all.I tried to take it for 3mths and couldn’t stand it- that was in 2003 and I was 47 and premenopausal. I’d had a lumpectomy and radiation.So 7yrs later bc came back in the same breast and I had to go through it all again- mastectomy and chemo. I then took Tamoxifen- I didn’t dare not! This time I was post menopause(54)and it wasn’t as bad. However, I did take a very low dose antidepressant which helped with hot flushes,sleep and low mood.I managed to take it for 4 yrs and then I’d had enough. I was starting to get a few health issues from it.Even if you took it for a few years, there would be benefits.I would suggest getting annual blood tests whilst on it ie. Cholesterol,trygliceride and liver function.Tamoxifen has been around a long time and is very effective(not always ofcourse).It can’t hurt to try it and see if it agrees with you.I’m 9 yrs clear now(or 16yrs from first bc)and I seem to be ok.I get how you feel about taking drugs but they do save lives( look at antibiotics) and we can’t afford to be flippant about bc.By the same token, you are an individual and have to do what feels right for you. Somehow you have to find a compromise that still sits ok with you.

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

@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

I’m on letrozole not tamoxifen, but if your oncologist is recommending it, why not try it with as open a mind as possible? You may not have the side effects you fear, and even those with difficult side effects often stay with it because of the potential benefit. You can always stop if the side effects are too bad, no-one can force you to take medication. But as side effects can vary immensely, perhaps you owe it to yourself to try and see what happens in your case, rather than relying entirely on the experience of some others. Best wishes whatever you choose.

Yep, no harm in trying it - you'll find out pretty quickly if it doesn't suit you. A lot of people don't get side effects & stay on it for many years, even 10 years (both my brother's mothers in law were on it for 10 years & still going strong, both now in their 90s.)Have you been thru menopause already?

Tamoxifen I want to say no | BCNA Online Network

29 Replies

EAA
Member
6 years ago
Hi Red 1
For what reason is the Onc choosing Tamoxifen over an Aromatase inhibitor such as Arimidex?
Have you got a copy of your pathology report? Age and stage, i think does matter.. Both drugs carry the risks of side effects. Ive had a mixture of both and felt better on Arimidex.
Risk assessments are difficult . If your tumor was lobular..current thinking is towards Aromatase
inhibitors, See, Lobular Cancer research group in USA.
I started on arimidex for Ductal Tumor then was changed to Tamoxifen. WIth a family history of
breast cancer, i grew a second primary tumor , lobular.. and now am on Arimidex.
Because they cant measure Oestrogen levels in the blood to check if the drugs are acting
as they should.. It all becomes a personal response as to how each person responds.
All the best.. in your decision.. It is scary.. In my experience it has been worth it..
If you choose Tamoxifen do get your eyes checked before you start. Cataracts are one
long term side effect also, an annual gynae check is recommended. As long as you’re
monitored For any of the fearful side effects.. its all ok... All strength to you..xoxo
Sister
Member
6 years ago
You can always stop if it's giving you grief but for many, it has minimal side effects.
iserbrown
Member
6 years ago
It's not all bad for everyone! Hopefully you'll sail through
Here's a link to the BCNA website wealth of information that may help you

https://www.bcna.org.au/resources/booklets-and-fact-sheets/

Take care
Red1
Member
6 years ago
Thanks for sharing TonyaM, it's really given me something to consider..it's just shit either way isn't it!
TonyaM
Member
6 years ago
Hi Red1,well I think chemo is way more dangerous and toxic than Tamoxifen! My friend took Tamoxifen for 5 yrs and had no side effects at all.I tried to take it for 3mths and couldn’t stand it- that was in 2003 and I was 47 and premenopausal. I’d had a lumpectomy and radiation.So 7yrs later bc came back in the same breast and I had to go through it all again- mastectomy and chemo. I then took Tamoxifen- I didn’t dare not! This time I was post menopause(54)and it wasn’t as bad. However, I did take a very low dose antidepressant which helped with hot flushes,sleep and low mood.I managed to take it for 4 yrs and then I’d had enough. I was starting to get a few health issues from it.Even if you took it for a few years, there would be benefits.I would suggest getting annual blood tests whilst on it ie. Cholesterol,trygliceride and liver function.Tamoxifen has been around a long time and is very effective(not always ofcourse).It can’t hurt to try it and see if it agrees with you.
I’m 9 yrs clear now(or 16yrs from first bc)and I seem to be ok.I get how you feel about taking drugs but they do save lives( look at antibiotics) and we can’t afford to be flippant about bc.By the same token, you are an individual and have to do what feels right for you. Somehow you have to find a compromise that still sits ok with you.
kmakm
Member
6 years ago
I'm with @Afraser. Give it a go for six months and see what happens. There's a reason it's prescribed: it improves survival rates.

The ultimate question to ask yourself, if you don't take it and your cancer metastasises or recurs, will you be tortured by your decision? Not to put too fine a point on it, but I would imagine you'd have to be able to look your loved ones in the eye with confidence if the worst happens.

The decision is yours and yours alone. It is your body, your life. You have to be comfortable with your decision, either way. I wish you the best of luck with this difficult decision. K xox
Red1
Member
6 years ago
No Menopause yet, although still not sure if the chemo has done that, I am in my early forties and have been reluctant to take medication my whole life- i'm one of those don't even take panadol people..I have read a lot of the research papers and articles on tamoxifen and while I am certain of the benefit it provides there are a few darker points to it that concern me and I don't want to spend the next 5-10years fretting as much as I don't want the cancer to return either.. i feel it's kinda a dammed if I do dammed if I don't situation, for me anyways
arpie
Member
6 years ago
Yep, no harm in trying it - you'll find out pretty quickly if it doesn't suit you. A lot of people don't get side effects & stay on it for many years, even 10 years (both my brother's mothers in law were on it for 10 years & still going strong, both now in their 90s.)

Have you been thru menopause already?
Afraser
Member
6 years ago
I’m on letrozole not tamoxifen, but if your oncologist is recommending it, why not try it with as open a mind as possible? You may not have the side effects you fear, and even those with difficult side effects often stay with it because of the potential benefit. You can always stop if the side effects are too bad, no-one can force you to take medication. But as side effects can vary immensely, perhaps you owe it to yourself to try and see what happens in your case, rather than relying entirely on the experience of some others. Best wishes whatever you choose.

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Tamoxifen I want to say no

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