BRCA1 and IVF PGS

Hi  and welcome to the online community

I'm sorry to read that you have the BRCA1 gene mutation. I don't have any experience to draw on about this but I noticed that your post had gone unanswered.

If you get no replies you could use the search bar in this group to look for previous threads about preimplantation genetic screening or ask for information about it in ask a nurse where one of the specialist nurses will aim to get back to you within 2 working days.

I hope the wedding goes well!!

Hi JadeEmma

I think you are asking a really interesting question and, as someone with a BRCA mutation and children in their 20s I'm also interested in finding out more about it.

I came across this article a few months ago about someone who has experienced PGD in India which states that it has only been used in about 150 cases worldwide, so I guess your chances of coming across someone who has had it are not particularly high.  

If you haven't already come across it, you might find the FORCE website useful and see if you can find anyone with experience through it.

Please will you post any info your find out about it as I'm sure there will be plenty of others who would like to know!

All good wishes.

Thank you very much for the link I will have a look! My genetic councillor has been great but we didn’t ask too many questions about the precess before I had my results as we didn’t feel the need! It’s just over two weeks until my appointment so I will share any information I get then!

I’ll have a look on the website you mentioned this evening.

Thank you again and Merry Christmas!

Best wishes

Jade x

Thank you so much for taking the time to respond. I’ll have a look in to both of those

Thank you -  it’ll be here before we know it!

Merry christmas! 

Jade x

Hi Jade

Just came across your post - I'm also in my mid 20s, a BRCA1 gene carrier and starting to think about having a family. Would definitely be interested in going down the IVF route to remove the gene if possible.

I've known I've had the gene since I was 18 (all women on my mum's side have tested positive for it, I think we're at a similar number of positive tests to your family) so have been loosely following progress - the gene can be removed through IVF but I think they have only been doing it in the UK for a couple of years so there doesn't seem to be much information about it online!

I really hope the appointment with your genetic councillor goes well - would be really interested to hear any info that comes out of it!

It sounds like we're in quite a similar boat - sending you and your family my very best wishes. 

Ashley x

Hi Ashley 

Its lovely to hear from you even if not in the most ideal circumstances. It’s so hard knowing where to go for information! I’ll let you know what I find out next week- do you have a genetic councillor to get in contact with when you decide to begin your family journey? 

Yehh there really isn’t much on it out there especially in the UK! I know that the beginning of the process is exactly the same as ‘normal’ IVF but once the eggs are fertilised and they reach the 8 cell (I believe!) division stage they then remove part of it to test for the gene and only implant the eggs that don’t carry it. But this could be a really small number and therefore the chance of a successful pregnancy is less than ‘normal’ IVF. I’m interested to find out how long the whole process will take and what the waiting list is like. As well as where it can be done as I’ve heard there’s not many places that do it. 

Thank you, it’s very much appreciated! I hope that you and your family are also well! 

Jade xx

Hi Jade

Definitely not ideal circumstances as you say, but it's really nice to speak to someone in a similar situation :-) Hope you're doing okay with it all after finding out - it's a strange thing to get your head around and process, but I've always thought that knowing is best so that we can actively make decisions like this around IVF, and also get access to top notch support and regular screenings etc. (Everything that my mum has had has been really good!)

We have a genetic counselor for the family but I haven't been since I went through the testing, I think it's about time I got back in touch.

Thank you, really do appreciate any information you can share. I think all the questions you've mentioned are spot on. I'm sure funding will come up too - I've read that the NHS cover the costs for your first child only, not sure if that's completely accurate though so would be another good thing to check! 

Best,

Ashley x

Hi, 

I've just come across this feed and am also 27 and have BRCA1, however a little bit further away on family planning but keen to know if anyone else has any more information on the process for screening and how it can affect how you are screened for cancer. I have a appointment to meet a genetics specialist but with COVID it'll be postponed a while.

I would appreciate any information anyone has! 

M x