When to stop Tamoxifen

Hi all,
I’m hoping to get some advice on when I should stop taking Tamoxifen. I was dx nearly 3 years ago and have been tamoxifen for very nearly 2 years now (not the funnest years either). I really would love to start a family but my surgeon tells me if I stop before the 5yrs I am increasing my risk of it coming back by a 3rd!!! I’ll be 35 in a month’s time, so if I take them for the whole time I could be nearly 40 by the time I can get pregnant which might mean it will never happen…
Has anyone gone through this? Have you been given any specific reassurances/instructions. My oncologist wouldn’t know what empathy means if it bit him on the behind, so haven’t been to see him since I finished treatment.
It feels so overwhelming to have to decide on my whole future again :frowning: I have decided to do the genetic test to see if I would give it to my kids if I ever had them anyway and talking about having a double mastectomy at 10years to reduce the risk of the original C coming back as much as possible. I’ve honestly been knocked sideways with this as I really thought my life could get back to normal I suppose once the 2yrs were up… naive I know…
M

Hi

It’s so hard getting used to this idea. I really feel for you. I’m sorry that I don’t have a positive story for you, but I was just about to start trying for a family in may and now the thought of having to put it off for 5 years is devastating. I’ve told my specialist that I want to have a family and he is sending me to a fertility clinic to discuss it with them in more detail. I know this is all new to me but it might be best to speak to your specialist about it. You don’t want to put your life at risk, but I completely understand the desire to be a mum.

I hope you get the answers you’re looking for.

Esther xxxx

Hi ,
my oncologist told me I would get 75% of the benefit of tamoxifen in the first 2 - 3 years. She also said it was up to me to weigh up the benefit of taking the tamoxifen for the full 5 years, as opposed to the risk of my reducing fertility as I will be in my late thirties. She mentioned all this without me asking and said she would be quite happy to discuss it with me, as long as I do at least 2 years of the tamoxifen. I was quite surprised and gave me hope at least!
i don’t qualify for the genetic test on nhs, but am considering paying for it, so I can take any poss risk factors for a recurrence into consideration before I decide about stopping the tamoxifen.
i know how you feel about having to change your plans because of this dreaded bc.
Get all the info and statistics you can and at least you can make an informed decision.
xox

My sister was diagnosed with breast cancer at 32. She had one daughter at that stage. Her cancer was aggresive and several lymph nodes were affected (4,i think). She had a lumpectomy, chemo and radiotherapy. Not sure what chemo she had but she did not lose her hair. She took tamoxifen for 2 years and also had zoladex injections. She wanted to have another child and conceived 2 years after stopping tamoxifen. She has had no recurrance of invasive cancer though she has recently had a mastectomy due to widespread dcis.
It is a very personal decison and if I was you I would get as much proffesional advice as poss before making your decision.

Sorry additional point: my sister was very reluctant to have genetic testing but has recently decided to have this done. The test was negative.

Hi,
i’ve just been through the exact same decision. I’m 32 this year and have taken tamoxifen for 2 years now. After a couple of discussions with my oncologist and she went off to do some more research and to her colleagues She came back to me with an increased risk of 5-7 % of stopping tamoxifen after two years, but pointed out that this is old data now and in post menopausal women and in people who didn’'t have Taxotere Chemotherapy as it did’t exist, she felt the risk would be further reduced in my situation.
The huge question i had was does pregnancy increase the risk of breast cancer recurring which it doesn’t. We have made the decision to stop the tamoxifen but her advice was to be off it for 3 months before trying to conceive. And they also tested my husbands sperm before I stopped to check that we could theoretically get pregnant.
hope this helps
Emma xx