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TTC on a tamoxifen break following breast cancer diagnosis

(12 Posts)
Shelz17 Wed 15-Jan-20 20:42:14

Hi there. I have recently stopped taking my tamoxifen to try for my first baby. I was on it for three years and stopped 9 months ago. I haven’t been lucky enough to conceive as yet and hoping against hope that it will happen soon. I do get anxious about being off the medication and I was wondering if anyone was in same boat? If so..how long would you give yourself ttc before you give up and start taking the medication again 😩 IVF isn’t a possibility for me as my cancer was hormonal. X

OP’s posts: |
HundredMilesAnHour Wed 15-Jan-20 20:47:44

How old are you? Is your age an issue for TTC and that's why you stopped taking your Tamoxifen?

To be honest, I would have done the full 5 years on Tamoxifen before stopping it but too late for that now. Is it worth discussing with your breast care consultant before making a decision to start/stop again? I think it's important you understand the impact so you can make an informed decision.

(I'm 3.5 years into my Tamoxifen and counting down that last 1.5 years)

Shelz17 Wed 15-Jan-20 22:41:05

@HundredMilesAnHour
Hey, thanks for reply ☺️ Yea I’m 37 so was keen to start as soon as. Didn’t take decision lightly, talked to few oncologists who said that three years was enough..I guess it offers different levels of protection depending on diagnosis..wasn’t in my nodes so that’s definitely on my side. I was told that five wouldn’t really offer much more protection than 3 years. But as you say.too late now! Have to just keep going and hope for positive result soon!!!
All oncologists leave it up to me to decide when I should go back on it if I don’t manage to get pregnant. The joys 😣😣
At least you only have to do five years..I’m supposed to do 10 😣😣 thankfully I don’t have any side effects from it..what about you??

OP’s posts: |
HundredMilesAnHour Wed 15-Jan-20 22:57:50

That's interesting as my consultant at Barts was very adamant that 5 years continuous usage is really important. I guess ultimately it's just a guessing game isn't it? They don't really know.

When I started the side effects were horrendous. My consultant told me that a lot of people stop taking Tamoxifen because the side effects are so bad. I really struggled for the first few months but I kept reminding myself that the side effects were worth it for the possibility of increased protection from breast cancer. My mother had breast cancer 3 times and it eventually killed her at 51. Anything I can do to reduce the risk of that happening to me is worth the side effects. I am looking forward to my 5 years being up though.

I can understand why you took a break though if they said you need to take it for 10 years.

Shelz17 Thu 16-Jan-20 09:10:01

Sorry to hear about your mum. It really is a horrible cruel disease. Three times..that’s just awful. It wasn’t in my family at all..very scary how it can just happen.
It used to bother me how each oncologist had very different opinions. Sometimes I think I just picked the most positive piece of advice and went with it because it suited me. 🙈 but I’ll just keep trying and hoping this happens soon so I can continue with my ten years.

OP’s posts: |
Puddingnpie Thu 16-Jan-20 19:21:25

I was told recently by my oncologist that taking breaks was ok (I'm newly on tamoxifen and not enjoying the side effects, so he suggested taking a break to see if it's tamoxifen or natural menopause kicking in - I'm 49). Oncologist was very relaxed about having breaks from it so I thought it meant it wouldn't have a significant impact on effectiveness.
Apparently 10 years is now the standard treatment. I'll be happy if I make it to 5 (even 3).
Good luck with ttc x

Shelz17 Thu 16-Jan-20 21:16:07

Thanks @Puddingnpie..nice to hear you were told something similar. I guess it really depends on the prognosis and everyone is different!
I think I’ve been very lucky with regard side effects..few hot flushes at the beginning but died down after a few months. I literally used to wake up soaking wet in bed..really vivid dreams too 😱
Well I hope it all works out for you..maybe there’s something else they can put you on if it turns out it is menopause. Wishing you the best of luck with it!! X

OP’s posts: |
deFrinkle Thu 16-Jan-20 21:30:00

Hi OP, have you had a look at the POSITIVE trial? It's a large ongoing study of women who take a break from Tamoxifen to have a baby, with the aim of seeing if they face any extra risks of recurrence. I think that they have set a baseline of a break of no more than two years for the women in the trial (which has to cover TTC, pregnancy and any breastfeeding), so I'd probably be guided by that.

I've only been taking Tamoxifen for a few months, but if I want a baby in the future I think I'd want to complete three full years of Tamoxifen first (at which point I'll be 36), and give myself about 8 months to conceive before throwing in the towel and going back on the drugs.

deFrinkle Thu 16-Jan-20 21:38:13

(But worth noting that I already have a child, which I think affects the amount of risk that I would be willing to take to have another one. Interestingly, the smaller studies that the POSITIVE trial is based on seem to show that in some situations pregnancy may actually have a protective effect against recurrence.)

Delatron Fri 17-Jan-20 08:09:29

Hi OP, I did already have 2 children when diagnosed but we were thinking of a third (I was 34). We decided against it as I had to have chemo but I remember doing lots of research and as the poster above says some new research is saying pregnancy can be a positive thing and helps with outcomes (something to do with it producing the good oestrogen?) this is very new research but something to discuss with your oncologist.

I only did 5 years and asked about 10 but I was told I was low risk so want worth it. I guess as I had chemo as well maybe they felt I was done.

Anyway, good luck. I needed up getting a second opinion on the 5 years versus 10 years so this is also something you could do about how long a break to have?

Shelz17 Fri 17-Jan-20 20:31:27

Hi Delatron, yes I was told that too actually. That pregnancy can be protective! Abit of positive news for once!!
@deFrinkle I’ll have a look at that trial..thank you for the heads up 😊 I don’t know how long I’ll keep trying before I give up..been getting really down about it. That will be a very sad day if I have to start tamoxifen again as then I know children will never be for me. X

OP’s posts: |
deFrinkle Sat 18-Jan-20 19:33:22

@Shelz17 - sorry to hear that you're feeling down. These are such agonising decisions to make, the "what ifs?" just spin in your head. If you've been trying for 9 months already, is it worth a trip to the GP for fertility investigations, in case there is a simple problem that they can help with? They normally want you to try for a year first, but perhaps, given the circumstances, they would waive that and fast-track you. ANd I know IVF is out of the question for you, but maybe there are some other fertility drugs (Clomid?) that your oncologist would be happy with that might speed things up?

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