BRCA1 positive at 24

Hello, your post really struck a cord with me. 

I was 25 when I found I had the brca1 gene fault, from my fathers side.

I totally understand how you are feeling and everything that’s going on at the moment isn’t helping. 

I wasn’t offered screening as they said I was too young at the time but it felt like a long road to my surgery. Lots of appointments (psychologists, doctors) and a change in surgeons at a different hospital all took 3 years. 

I had a double mastectomy age 28, I’m now 34 and starting to think about saying goodbye to my ovaries. I have 2 children age 16 & 11 so it’s an easy decision for me. 

All I can say is don’t let it consume you, keep your mind busy and make sure you tell doctors how you feel too. 

Sending hugs

sam

Hi Sam,

Thank you so much for your reply. I feel like there’s not a tonne of support out there for those of us who find out so young, and the advice from different professionals is very conflicting. It feels very lonely, so it’s great to hear from someone that’s been in my position before! I very much appreciate you reaching out. I’m feeling a lot more positive today, trying to keep busy! Hope you’re doing well. :-) 

Hi! 

I also have BRCA1, from my fathers side, where there have been 3 female relatives who have unfortunately passed from Breast or Ovarian cancer (in their 50s). I was tested at age 26 Dec (2018) and will be 28 in October. 

After meeting with specialists and lots of reading I 'planned' to have breast surgery after children so I could breast feed etc. However I too have been feeling anxious recently with the same fears as you which is what has lead me to this post. I think it's hard to make a decision either way.

I am currently reading "Dangerous Boobies, breaking up with my time-bomb breasts" by Caitlin Brodnick (she also did a mini series "Screw You Cancer" which I've yet to watch). She's an American comedian, who also has BRCA1 and made the decision to have a double mastectomy and reconstruction ages 28. She has a light hearted stance but her writing is very detailed and it has definitely helped me rationalise some of my own thoughts. She also expresses all of her thoughts and feelings around her decisions to have the surgery and how her anxiety was something she battled during this process too. 

Sorry this probably hasn't been as helpful as you need, but just to let you know someone else feels the same and is equally as confused as you! 

M x

Hello all, 

I hope you don't mind me jumping into the conversation. I'm sorry to hear about your diagnoses. Thank you all for sharing your experiences and methods of coming to terms with the situation.

BE_95 - I am in a very similar position. I found out I am positive for BRCA1 two years ago (when I was 21). I also had a generally positive initial reaction and only later found myself struggling to cope with the situation. It does get better.

Right now there is such a great amount of information and emotions to process and it's undoubtedly daunting. I think it's great that you have come here to share your thoughts. It took me at least a year to open up about it, thinking it was something I could just attack with logic and research. I found that joining a couple of Facebook support groups for women with BRCA really helped my anxiety. They are a chatty bunch but very lovely haha. At first it got on my nerves to see it constantly on my news feed but eventually it helped to normalise the situation for me and made me feel like less of an outsider.

I was also very keen to get the preventative breast surgery as soon as possible but I'm glad that I have waited. Over the last two years my mindset has changed a lot, I've had time to research and cry and be angry and share and I think the decisions I've made now that I am calmer are a lot different than what I would have done in the first year after my diagnosis. I'm only now getting back in touch with my genetic counselor to start the journey towards surgery. They are very reluctant to allow women of our age to have the surgery but if you really want it, they cannot stop you. I'm certainly not getting it all right and I still have moments of real anxiety about the situation but my main advice would just be to be as open as possible; talk to your friends and family or a therapist (if that is feasible). Let your mind find as much peace before you take the next step. 

If you want to talk at any time, feel free to message me. 

E x

Hi, I just joined this group and am in the same position as you, I found out last year when I was 21 and although I've tried to forget about it, I'm starting to get worried (especially with everything going on now, having unlimited time to overthink), particularly as most of my aunties have had breast cancer and my mum is waiting for a mastectomy. If you don't mind me asking, have you had any updates regarding early testing as I want to look into this too as I want to be as prepared as possible and reduce the risk as much as I possibly can. 

 Sending positive vibes.

Z

Hi! I'm sorry you're feeling so overwhelmed. Maybe my story will help. I was also diagnosed in my early twenties but that was twenty years ago when these tests were new. I met with surgeons right away who wanted me to have my ovaries and breasts removed stat. I almost went for it because I was so freaked out about developing cancer. But rather than take action in the middle of an emotional freakout, I gave myself some time to simmer down first. This actually look several months. When I was feeling a little less freaked out about my immediate risk, I did some soul searching. Maybe I wanted kids? My adult life hadn't really even started. My mother and grandmother had both had breast cancer but not until their late 40s/early 50s. I decided to wait. Today I have two kiddos. I'm so happy I waited to remove the ovaries! I started all of my surgeries (hysterectomy, double mastectomy, reconstruction) in 2017 and wrapped all reconstruction etc up in Feb of this year. I'm still young-ish (44), but I think my "sign" came shortly after I turned 40, which is a natural time to reevaluate your life. It was then that I decided I did not want to be strapped to ticking time bombs anymore and went for it. I'm so happy I did! If you ever want to hear more about my own experience or have any questions just reach out!

Hello,

Firstly, thank you for taking the time to reach out and write about your story. It is wonderful and eye-opening to read about your decisions and has definitely eased my mind. I definitely think by the time I'm older and am able to start having mammograms and regular tests I will have a better idea, it's just hard not to overthink sometimes especially with a large family history. 

Sending you well wishes for 2021!

I'm happy that my experience, aside from helping me, can help others too. Have a very Happy 2021!

Hello everyone,

it’s been so reassuring reading all of your posts about this. I found out when I was just 18 (I am now 27!) I’m am looking into everything a bit more now as I always said I wanted to have my risk prevention surgeries by the time I was 30(ish) and after I had finished having my children.. 

glad there is a community here where we are all in the same not. Like you I mainly read about women who are in there 40’s+.

Stay safe

L