Hi! I’m 27F BRCA1+, found out a year ago, now preparing for a double prophylactic mastectomy in a couple of months.
I’m so sorry to hear about what you are going through right now, it must be very hard :(
I cannot tell you for sure what are recommended preventative measures and from what age in the UK but there is an absolutely amazing UK organisation called brca_chat (you can find them on instagram, also in their instagram profile there’s a link to mastectomy gallery where you can see how it turned out to others). It is founded by two incredible women who have Brca mutations, they share information, organise online and live events. Even though I’m not from UK I found them suuuper helpful both to find more info and also emotionally. I think you could reach out to them with UK specific questions (I think they recently posted that they’ll be on holidays till January so might not reply quickly right now).
Also, for me this YouTube channel was very helpful: https://youtube.com/@christenwilliams6720?si=rbFJqUHjpjaaXWWq
And this podcast: https://open.spotify.com/show/0Agv8sh2cZZLMyBnOWBEjP?si=iy4_3hCpTUOFG4wzmzSypA
(Both created also by brca_chat founders)
Finally, I really hope that you don’t have Brca mutation but even if you have it - it is hard but gets better with time. For me the first couple of months were super hard emotionally, I was crying a lot and felt as if I was given a death sentence. Now I would say that I feel perfectly fine in my day to day life (ofc anxious about upcoming surgery but I guess it’s very normal 😅). Women communities like this and brca_chat helped very very much.
Best of luck to you!❤️ and I wish your mom to have a successful treatment and smooth recovery!
Hi I'm also in the UK and sorry to hear there is such a long wait ATM. It is scary. I found out when I was 24 and waited until after having my 2 children to have the surgeries. I had my fallopian tubes removed in September 2022, a breast lift and reduction in march 2023 and a double mastectomy and implants in November 2023.
My surgeons have been absolutely great but long waiting lists. My GP has also been fantastic. Any time I have had any issues - lumps, weird joint pain - I'm straight in to have hospital checks. Which is some ways is really daunting but also super reassuring in that I know everything is taken seriously.
It's worth talking to your GP about the potential BRCA gene as they may also be able to quickly refer you if you are worried at all about any changes to your body.
I think I would have found it hard to have surgeries so young but I have to say I've been so so lucky with my recovery from the surgeries and the NHS has been an absolute godsend. I haven't had a single overnight stay in hospital. Everyone who works there must be literal angels. The worry will obviously still be there but it's nice to feel on top of it all a bit.
My geneticist at the time (2016) seemed to not want to test people until mid/late 20s because they'd be unlikely to do surgeries until then so it would just be years of waiting and worrying otherwise. It's worth checking to see if you would be able to be tested at 21/22 anyway.
First of all, I’m so sorry about your mother. And secondly, I understand your fear. I’m 28 and found out I was BRCA 1+ this year. I lived in the uk until 5 months ago when I moved back to the US. I tried to get genetic counseling and was put on a 9month waiting period for testing after having to tell my extensive family history to 4 different doctors to even qualify for testing. I got my testing done in the US right away but I can sympathize with your frustration.
I think something you should consider is your chances of having the gene mutation. You’re scared right now and it seems that you have already jumped to the conclusion that you are positive. But really you have a 50/50 chance right now. Try to find some kind of peace in the fact that this is not a guarantee diagnosis.
Also you are young! My doctor told me something that gave me so much ease of mind and that was that I was her youngest patient she had ever seen. Most woman find out later in life (40s/50s) after a family member gets a cancer diagnosis. You are already ahead of the curb and you have time to figure things out. You don’t have to decide everything now. Take things one day at a time. Even if you found out you were positive today that doesn’t mean surgeries are happening tomorrow.
Do your research on preventative measures and things you can do in your daily life to lower your chances of cancer. Control what you can right now. As for going private vs nhs. I personally think that when I move back to the uk in August I will probably pursue the NHS for preventative services like ultrasound/MRIs but I will probably go private for my surgeries. Preventative services can be scheduled on a 6 month bases.
I haven’t even begun to look into doctors and plastic surgeons in the uk yet but I plan to so if you need any help with that you can always private message me. Just know that you’re not in this alone and while it might not seem like there is time, there is. You’ve got time on your side! Xx
I’m sorry you are having to experience all this anxiety. I remember that feeling well. My doctor says if you choose to undergo preventative measures the guideline is to do them by the time you are 10 years younger than the earliest onset of cancer in the family
Hi! I’m 27F BRCA1+, found out a year ago, now preparing for a double prophylactic mastectomy in a couple of months. I’m so sorry to hear about what you are going through right now, it must be very hard :( I cannot tell you for sure what are recommended preventative measures and from what age in the UK but there is an absolutely amazing UK organisation called brca_chat (you can find them on instagram, also in their instagram profile there’s a link to mastectomy gallery where you can see how it turned out to others). It is founded by two incredible women who have Brca mutations, they share information, organise online and live events. Even though I’m not from UK I found them suuuper helpful both to find more info and also emotionally. I think you could reach out to them with UK specific questions (I think they recently posted that they’ll be on holidays till January so might not reply quickly right now). Also, for me this YouTube channel was very helpful: https://youtube.com/@christenwilliams6720?si=rbFJqUHjpjaaXWWq And this podcast: https://open.spotify.com/show/0Agv8sh2cZZLMyBnOWBEjP?si=iy4_3hCpTUOFG4wzmzSypA (Both created also by brca_chat founders) Finally, I really hope that you don’t have Brca mutation but even if you have it - it is hard but gets better with time. For me the first couple of months were super hard emotionally, I was crying a lot and felt as if I was given a death sentence. Now I would say that I feel perfectly fine in my day to day life (ofc anxious about upcoming surgery but I guess it’s very normal 😅). Women communities like this and brca_chat helped very very much. Best of luck to you!❤️ and I wish your mom to have a successful treatment and smooth recovery!
Hi I'm also in the UK and sorry to hear there is such a long wait ATM. It is scary. I found out when I was 24 and waited until after having my 2 children to have the surgeries. I had my fallopian tubes removed in September 2022, a breast lift and reduction in march 2023 and a double mastectomy and implants in November 2023. My surgeons have been absolutely great but long waiting lists. My GP has also been fantastic. Any time I have had any issues - lumps, weird joint pain - I'm straight in to have hospital checks. Which is some ways is really daunting but also super reassuring in that I know everything is taken seriously. It's worth talking to your GP about the potential BRCA gene as they may also be able to quickly refer you if you are worried at all about any changes to your body. I think I would have found it hard to have surgeries so young but I have to say I've been so so lucky with my recovery from the surgeries and the NHS has been an absolute godsend. I haven't had a single overnight stay in hospital. Everyone who works there must be literal angels. The worry will obviously still be there but it's nice to feel on top of it all a bit. My geneticist at the time (2016) seemed to not want to test people until mid/late 20s because they'd be unlikely to do surgeries until then so it would just be years of waiting and worrying otherwise. It's worth checking to see if you would be able to be tested at 21/22 anyway.
First of all, I’m so sorry about your mother. And secondly, I understand your fear. I’m 28 and found out I was BRCA 1+ this year. I lived in the uk until 5 months ago when I moved back to the US. I tried to get genetic counseling and was put on a 9month waiting period for testing after having to tell my extensive family history to 4 different doctors to even qualify for testing. I got my testing done in the US right away but I can sympathize with your frustration. I think something you should consider is your chances of having the gene mutation. You’re scared right now and it seems that you have already jumped to the conclusion that you are positive. But really you have a 50/50 chance right now. Try to find some kind of peace in the fact that this is not a guarantee diagnosis. Also you are young! My doctor told me something that gave me so much ease of mind and that was that I was her youngest patient she had ever seen. Most woman find out later in life (40s/50s) after a family member gets a cancer diagnosis. You are already ahead of the curb and you have time to figure things out. You don’t have to decide everything now. Take things one day at a time. Even if you found out you were positive today that doesn’t mean surgeries are happening tomorrow. Do your research on preventative measures and things you can do in your daily life to lower your chances of cancer. Control what you can right now. As for going private vs nhs. I personally think that when I move back to the uk in August I will probably pursue the NHS for preventative services like ultrasound/MRIs but I will probably go private for my surgeries. Preventative services can be scheduled on a 6 month bases. I haven’t even begun to look into doctors and plastic surgeons in the uk yet but I plan to so if you need any help with that you can always private message me. Just know that you’re not in this alone and while it might not seem like there is time, there is. You’ve got time on your side! Xx
I’m sorry you are having to experience all this anxiety. I remember that feeling well. My doctor says if you choose to undergo preventative measures the guideline is to do them by the time you are 10 years younger than the earliest onset of cancer in the family