I’m back...and BRCA 2 ?: Hi everyone So... - Fertility Network UK

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I’m back...and BRCA 2 ?

sipidania
sipidania

Hi everyone

So....for those of you that don’t know me my husband and I underwent 3 rounds of EC/ICSI in 2016 and had one FET in October 2016 which resulted in our beautiful daughter Lucy who has had a tough first year but is doing really well thank God.

We were always planning on trying again with our 4 remaining Frosties however we now have some news that potentially complicates things a bit. My mum has late stage ovarian cancer and they got around to testing her for the BRCA 2 gene (it’s a gene mutation that puts you at high risk for breast and ovarian cancer - the one Angelina Jolie has) so my siblings and I are all being tested. Turns out I’m positive for it and the recommendation is ovary and Fallopian tube removal pretty much ASAP. Apparently we discuss cutting my boobs off later 😳.

Anyway, I just wondered if anyone on here has been through the BRCA 2 journey while also going through IVF and has any tips/advice. I’m due to speak to my clinic soon and have an NHS gynae appt booked for end of the month too.

Yay! Cos it wasn’t already a stressful enough experience going through IVF!

10 Replies
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Hi, I'm so sorry to hear that you've been through so much. Sounds like a really tough time. I've never been through anything like it but just wanted to say that I think you're really brave to share and that I wish you all the best for the future x

Aww thanks LBG. This site was so amazingly supportive first time around so I know I’m sharing among ‘friends’ as it were. Posting also makes it real as I need to start facing up to it all to be honest! X

This site has been a haven for me and I honestly think just being here is good karma. If you support others then good things will come back to you :)

Im so sorry to hear about your mum, very sad for you! I cant really offer any advice on the the IVF thing and BRCA 2 gene but it must be stressful knowing that this is hanging over you. Hopefully once you have a chat with the consultant you will have a better idea of how to proceed and if it will affect your IVF and if you need to get onto surgery asap before trying your frosties. Hope your consultations go well, they should have a specialist nurse that can perhaps lend some support for this too and perhaps a counsellor which might be worth looking into.

Glad to hear Lucy is doing well!!xx

Hi Sipidania,

Sorry to hear about your mum, that's really sad

I too have the BRCH2 gene!

I have unexplained infertility and have been TTC for 6 years.

I've recently been for a meeting with an IVF clinic regarding having PGD Screened IVF cycles (NHS Funded as I have the BRCH2 gene) which basically means when eggs are collected & fertilised via ICSI the Docs then take a strand of DNA from your frostie & only puts one back in you that doesn't have the gene.

For me & my OH we decided not to go down this route because if all the eggs have the gene then they all get put in the bin. Then you'd have to start all over again with another Fresh Cycle.

Also, our clinic doesn't have any funding until May next year & if we were to get pregnant naturally (that'll be the day) between now & May then we would have to pay for the PDG even though we haven't had it cos we would have been on the list.

We're just going to go for "normal" IVF due to my unexplained infertility diagnosis. (Hopefully this will start soon)

However, if these "negatives" don't seem that bad to you, could this be something you could look into?

My genetic counsellor advised me that PGD was an option when I was advised I was positive for the gene. Perhaps speak to them to see if it is an option for you?

I would like to have the opportunity to have my own child before looking down the route of the preventative surgeries of tube removal, double mastectomy & reconstruction ... plus being only 32 the thought of all of that terrifies me! (Am having yearly MRIs in the meantime)

I wish you the best of luck & please feel free to message me anytime. It's truly SH*T to have to go through IVF & also have this gene! xoxo

Bless you what a tough decision for you hope you get great advice and support from your medical team and love from family and friends x

Goodness, what a horribly stressful set of choices for you. I am deeply saddened to hear about your mum, such a tough time for all, I can’t even begin to image how you must be feeling.

Knowledge gives you power here though, so it’s good that you know. That knowledge is yours to handle as you see fit... you can take preventative steps if you choose to. You can also screen for BRCA2 if you go forward with further IVF. Just know that you have support here, whatever choices you make.

Sending huge hugs to you and your family xxx

Hello 👋

Omg your daughter is gorgeous, there’s such mischief in them eyes! Too cute!

I was just having a general peruse of the posts and found you and momma bear and I’ve often wondered how you both were. What a crap time of it you’ve had- both of you. Such a rollercoaster isn’t it. From my own experience i know how resilient kids can be, even when they are on the brink. I’ve neber felt a pain like it having to hand my baby over to theatre even though I knew I had to to save his life. I hope she’s out of the woods now 🤞I’m sorry about your latest piece of news. I’m sending prayers your way. Charlie’s doing well in the grand scheme of things, has a right tympanic flatline which will be monitored (in his right ear) and he’s only on the 5th centile so there’s a chance of stunted growth and then his risk of being on the autistic spectrum, all stuff we can deal with. As long as we’ve got him I don’t care ❤️ Sending much love to you and your family. Be strong sweetheart. Xxx

How did I not see this reply before?! Big loveMiss Winky and merry ChristmS! Xx

I’m sorry that I have to advice, but I just wanted to wish you all the best through this tough time xxx

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