One of my tumours (i have multi focal) was e+ by only a small amount, so I am borderline for tamoxifen. Professor of Gynecology (who i met about genetics and risk of gyno cancer due to family history), says no don't need to take it, in fact the risk of uterine cancer from taking it is higher than any benefit for BC recurrance, oncologist says yes, take it, no question about it. I was due to start July this year but have been putting it off. The agreed time to start now is Jan when herceptin finishes. I am very torn, I really really really want to finish herceptin and leave it at that. Just to feel well again. I am weary of side effects, fatigue, hot flushes, hairy face etc and don't like the sound of tamoxifen when I read about it, like it multiplies what is already happening plus more. Has anyone felt like this? Or have you decided not to take it? Or taken it without noticeable side effects? Have you always done as recommended by your onc? I have a few months still to mull it over, but would love some perspective for you gals.... Xxxlouie

It's going to be a hard decision when you feeling so torn. The big question is Who knows the most about cancer treatment - gynaecologist or oncologist? My 1st gynaecologist was not as informed as my 2nd one, who agreed totally with my Oncologist. Maybe check with a different gynaecologist? Thinking of you - these decisions wear us out - you will feel so much better when you have decided. Don't let it make you stress. Michelle xxx

My cancer was highly eostrogen +ve.My oncologist says Tamoxifen will give me the best cover and wants me to stay on it for at least 5 years.I have now been on it for 3 years and here's what I've found. It definitely cranked up the hot flushes,made me a little irritable and interfered with sleep.To counteract all that I take Endep 10mg and now have to have caterpress as well for elevated blood pressure(which I didn't have before starting Tamoxifen).I am reasonably stable with this cocktail.Now,after 3 years,I'm finding my hair is thinning abit and I have changes in the lining of my uterus ie.I have cysts all through the lining which,my oncologist says,is perfectly normal with Tamoxifen and is not a precurser to uterine cancer.When the hot weather hits,I do find it harder to cope with the hot flushes.So what I do(and this is naughty!) is give myself a Tamoxifen break for a month or so.I also stop it if I'm going on a long flight even though my onc said there was no need to.I just don't want to risk a DVT. I figure the only way I'm going to take this drug for 5 years is to have a break from it now and again. I'm just being totally honest with you Louie as to how this drug effects me personally and how I deal with it. I do not recommend my rebel ways to anyone!I have a girlfriend who had no side effects at all from Tamoxifen. It is a tough decision for you and I think you could ask your oncologist what percentage benefit will it give you.Do you have to take it for 5 years- is there a compromise? Can you have a few months break after Hercepton before taking it?Good luck with your research-hopefully others will jump on here and give you their views. love,Tonya xx

He is actually a gynoclogical oncologist. Professor no less. I had a third opinion of sorts, while waiting for the onc at an appointment to dicsuss this i chatted to the onc registrar, he agreed with the gyno onc. But of course did not challange the med onc when she came into the room. A good idea though, i might seek another opinion. There are 4 med oncologists at the hospital i attend, perhaps I or she can seek their opinion. cheers Louise

Yes she is suggesting 5 yrs for the tamoxifen and up to 10 depending on my menapause position (i think) when i start. If menapause continues (my bloods indicate menopause now) she might recomend a change to an aromotose inhibitor. More worse side effects. One of those things i want to avoid is the knock on effect of taking it, like you say you take Endep to deal with the side effect of tamoxifen. I am with you re taking control for yourself and stopping now and then. We really are prisoners of this disease. My onc doesnt really do statistics, she says that the questions i ask, like what are the stats of not taking it if the count is very low, dont exeist because they dont study things like that because they couldnt do a study where they ask people not to take something the standard of care requires them to take. Long winded I know, but its actually really helping me thinking this through. XXX Louise

Hi Louie, We must have a similar diagnosis. I started taking tamoxifen after radiation but while I was still on herceptin (just finished in Sep yippee). I was really nervous to start taking it having read so many negative things but I've been fine on it as long as I take it in the evening just as I'm going to bed. I've found the hot flushes manageable but these started during chemo anyway. My onc seemed to think the risk of uterine cancer was very small. I've done everything they've recommended but I don't have any family history complicating things. Another opinion might be worth it to help you decide. Barb xxx

Tamoxifen: to take or not to take?

33 Replies

LouiseTurner
In Memoriam
12 years ago
He is actually a gynoclogical oncologist. Professor no less. I had a third opinion of sorts, while waiting for the onc at an appointment to dicsuss this i chatted to the onc registrar, he agreed with the gyno onc. But of course did not challange the med onc when she came into the room.

A good idea though, i might seek another opinion. There are 4 med oncologists at the hospital i attend, perhaps I or she can seek their opinion.

cheers Louise
TonyaM
Member
12 years ago
My cancer was highly eostrogen +ve.My oncologist says Tamoxifen will give me the best cover and wants me to stay on it for at least 5 years.I have now been on it for 3 years and here's what I've found. It definitely cranked up the hot flushes,made me a little irritable and interfered with sleep.To counteract all that I take Endep 10mg and now have to have caterpress as well for elevated blood pressure(which I didn't have before starting Tamoxifen).I am reasonably stable with this cocktail.Now,after 3 years,I'm finding my hair is thinning abit and I have changes in the lining of my uterus ie.I have cysts all through the lining which,my oncologist says,is perfectly normal with Tamoxifen and is not a precurser to uterine cancer.When the hot weather hits,I do find it harder to cope with the hot flushes.So what I do(and this is naughty!) is give myself a Tamoxifen break for a month or so.I also stop it if I'm going on a long flight even though my onc said there was no need to.I just don't want to risk a DVT. I figure the only way I'm going to take this drug for 5 years is to have a break from it now and again. I'm just being totally honest with you Louie as to how this drug effects me personally and how I deal with it. I do not recommend my rebel ways to anyone!I have a girlfriend who had no side effects at all from Tamoxifen. It is a tough decision for you and I think you could ask your oncologist what percentage benefit will it give you.Do you have to take it for 5 years- is there a compromise? Can you have a few months break after Hercepton before taking it?Good luck with your research-hopefully others will jump on here and give you their views. love,Tonya xx
Michelle_R
Member
12 years ago
It's going to be a hard decision when you feeling so torn. The big question is Who knows the most about cancer treatment - gynaecologist or oncologist? My 1st gynaecologist was not as informed as my 2nd one, who agreed totally with my Oncologist. Maybe check with a different gynaecologist? Thinking of you - these decisions wear us out - you will feel so much better when you have decided. Don't let it make you stress. Michelle xxx

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Tamoxifen: to take or not to take?

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