What happens after five years on Tamoxifen?

Tamoxifen reduces oestrogen and is taken when cancer is oestrogen receptive?But if I still haven’t gone through menopause at 53 wont I still be producing oestrogen? What will happen? I’ve a marina coil fitted because of horendous periods ,very heavy. With the coil periods light but last up to 42days. How will my body react if I stop taking Tamoxifen, which I’m expecting to do in about 2 months? Can anyone help? Can the nurses explain?

Hi chinook,
I have only recently started on tamoxifen, and asked my onc (well his registrar), at my last meeting, as I am 36 so will only be 41 when I finish taking it. I was told they don’t like you to take it for more than 5 yrs as it can cause cancer of the womb, and thrombosis, but no real explanation as to what happens to my oestrogen levels, surely I’ll be at risk again!

Sorry not much help, but hopefully bumping up, so anyone with more info can explain.

Take care x

Hi crazycat/Chinook,

i have been wondering the same as will only be 45 when i finish, hope someone can shed some light for us.

Sarah.xxx

Tamoxifen doesn’t actually reduce the amount of oestrogen in your body - it just locks into cancer cells stopping them from sucking it up and using it to fuel growth. Your oestrogen production is the same as it ever was which is good news for bones, brain etc.
I felt the same way you do (I was 43 at diagnosis) and still having very heavy periods and solid 28 day cycles. In the end I had my ovaries removed so that I could take Arimidex.
Maybe an oopherectomy is an option that could be discussed with your surgeon - it is a very easy one day procedure.
I have to say that after years of menstrual misery I am loving being menopausal!
Good luck.

Its me again. Thanks for info about tamoxifen. Now next question. If I have ovaries removed will I definitley go into menapause and if thats the case why hasn’t anyone suggested it to me. They have suggested hystorectome which I declined. I pick up infections in hospital when I’m visiting people and that seemed a bit major to risk infection.
By the way I honestly thought I was cracking up both mentally and physically and after just a few days looking at the posts on this sight I discover everything that bugs me are known side effects of tamoxifen. I’m not insane after all.

Thank you

Chinook, different parts of your body still produce oestrogen, in particular body fat. Even having your reproductive organs removed will not get you out of hormone therapy. You would simply be switched from Tamoxifen to an aromatase inhibitor (Tamoxifen is for pre-menopausal women, a-i’s for post-menopausal).

I suggest you speak with your consultant or breast care nurse about what happens to you in five years. Everyone is different and needs a differnt treatment. I think the big thing with the five years is that the chances of the cancer coming back are greatly reduced. That is why you have less (perhaps no) treatment and fewer check-ups after five years.

SH is right in that you will still have hormone treatment but I had to have my ovaries removed years when quite young and am still on tamoxifen. It’s considered good as less risk of osteoporosis if yu are post-menopausal.

Hi Ladies,
I have just started tamoxifen at the age of 47, I was told I would be on it for 5 years and the prob be moved onto arimidex for another 2 years after that - deep joy !!

Tracey xx

Now on third week of this period so menapause sounds bliss. I really will have to start asking more questions. I was an intelligent woman before BC.
Happy days.
Thankyou ladies.

The mirena is a hormone release device (although not oestrogen), but even though there is no study to show whether it is a risk factor or not, I was advised to be on the safe side to remove it before chemo.

It has since turned out that I am post menopausal, so didn’t need it anyway (I’ve had it for 18 years and not had periods with it - lucky me! - so only a blood test showed me whether I was pre-or post mp), but I am still going to have Tamoxifen for 5 years.

A

I too had a Mirena coil and was told I had to have it removed because it puts progesterone into the body and my cancer was PR+. Some oncs say this doesn’t matter, but some do. In my case although I’m 51 I’m not fully post-menopausal so I changed it for a conventional coil, which had the unexpected and pleasing benefit of compensating to some extent for the vaginal dryness that we tend to get from Tamoxifen. So some clouds do have a silver lining!
I’m also taking Zoladex and have been told that I’ll be taking the Tam and Zol for at least 2 years, then they’ll do another blood test to check if I’m post-meno. Once I’m post-meno then I’ll be switched onto Aromatase Inhibtors, presumably for at least 3 years since the highest risk period is the first 5 years.
Sarah x

Thanks for all the info and posts. I’ll be back at Docs next week with a number of questions.

I don’t have a Breast care nurse any more.

Chinook

Hi

I am finishing tamoxifen this June aged 42. My onc looked at recent studies and advised nothing was found to be beneficial to extend the 5years. She also blanky refused ovaries being removed as no bleeding, I also have the mirena coil which my onc + breast surgeon and GP were all happy for this to continue even with my high er and pr scores. My onc calls ovary removal chemical castration - no going back and side effects can be a lot worse - she will only book in ladies if all else failed, she likes to have options as a just in case. and because I had 2 of the big guns at primary (tax chemo + herceptin) I understand decisions.

I am having bloods tested in sept and if i am post menapausal (which is very doubtful) then i will get arimidex. Although after continous treatment for 5.5 years with chemo,herceptin, rads and tam - quite looking forward to going drug free.

Debs