Thanks @Giovanna_BCNA
A little bit about my background and experience... In 2017, I'd not long turned 31 and it was 7 weeks before our wedding, I was diagnosed with ER+/PR+/HER2-/BRCA- breast cancer. I was very fortunate that I caught it early before it had spread to my lymph nodes. I had the Oncotype test done which guided my decision not to have chemotherapy but I had surgery, radiation, tamoxifen and zoladex (I stopped the zoladex after about 6 months due to side effects).
As I was desperate to have a child we sought out a second and third oncologist opinions. I had also contacted the Positive Trial organisers as I would have been keen to be on the trial to help others in future but they were looking for people based in Perth at the time. This trial will hopefully help others in future but it had not long started around the time of my diagnosis. It may be worth checking if there have been any preliminary results?
Despite getting 3 opinions on the topic of "how long should I stay on hormone medication before stopping to try to conceive" the opinions I received ranged from 18 months to 5 years. Because I was inclined to go with the shortest period possible because there was a history of early menopause in my family, my oncologist/GP and I decided that it would be best to go down the IVF route. That way, I could safely do a round of IVF whilst on tamoxifen (I assume it couldn't be done whilst on zoladex though), freeze embryos, and have them ready to go for when I came off tamoxifen. They like you to have a 3 month "wash out" period to come off tamoxifen before trying to conceive because it can cause birth defects. Doing IVF allowed me to stop tamoxifen, wait the 3 month wash out period, then do a frozen embryo transfer. (I had also done a round of IVF when I was initially diagnosed but that resulted in no embryos and was a devastating experience).
If we hadn't done IVF whilst I was on tamoxifen the alternative plan was that I come off tamoxifen, wait the 3 month wash out period, then give ourselves 3 months to try naturally, and if we weren't successful after 3 months we had been advised to go down the IVF route then (and do a fresh cycle). The whole reason IVF was suggested was to assist the conception process as much as possible in order to minimise the time I was off hormone treatment. We were incredibly fortunate that whilst the round of IVF we did only resulted in 2 embryos, the transfer was successful first time. So the "trying" part for me was pretty much nil. IVF is tough for anyone but I did find it particularly difficult because sometimes the nurses would ask, "how long have you been trying?" To which I then had to explain that I'd never tried and why I was there. I know the IVF route is not for everyone and whilst it was subsidised by Medicare because it was for medical reasons it is still not cheap. I noticed you're based in Canberra. We only moved here a year ago, so once the craziness of covid is over, more than happy to meet for a coffee if you want to discuss more. I should say, the things I was least prepared for were my fear around recurrence after having my daughter, not being able to breastfeed for long (although I know I was lucky that I still could, albeit one-sided). I also got opinions on breastfeeding which ranged from "you could give a little colostrum in the first few days" to 6 weeks. I ended up breast feeding for 7 weeks before going back on tamoxifen. I could only feed from the one breast so I worked really hard with a lactation consultant who had me pumping and feeding constantly to build my supply on the untreated side. All up I was off hormone treatment for 14 months. I also had my imaging work done just prior to stopping tamoxifen as I wouldn't have been able to have the mammogram or MRI once pregnant. I had one breast ultrasound during the pregnancy for peace of mind as everything was changing.
Apologies for the lengthy response but hopefully it helps a little. Wishing you all the best@Laura_Ann
