BRCA2 positive and feeling overwhelmed

Hi,

I first got asked by a doctor at the age of 20 if I wanted to be referred to be gene tested after a routine contraception check up and me explaining that there is history of breast cancer in my family with my mum being diagnosed the first time at the age of 36. At the time I was at university and felt it wasn’t quite right. After 6 years of it always being in the back of my mind, and being settled with my fiancé I decided it was time I needed to find out. 

A couple of months ago I got my results and was told that I have unfortunately inherited the BRCA2 gene. After quite a few tears and lots of wine I decided that the best way to handle it is to be as positive as can be and i’m very much in the mindset that knowledge is power! However, since I’ve had follow up appointments to talk through all of my options I have started to feel very overwhelmed! 

I’ve decided I want to go ahead with the risk-reducing surgery but my big question is when is the right time? 

So I’ve joined this group to meet people who have gone / going through the same as me. Any advice or stories are welcomed! 

Thanks so much and I hope everyone is okay Heartpulse 

  • Hi  and welcome to the forum and sorry you haven't had any replies.  You can try posting on the main breast cancer forum and see if you can find anyone on there who is going through similar or you can try responding to someone else's post on the BRCA2 thread in order to connect with someone that way.

    If you do decide to respond to someone put @ before their name, wait for the drop down box to appear and then click on their name.  This way the person you are responding to will be notified that they have a message.

    Also if you put BRCA2 in the search box it will bring up other relevant posts that you might want to respond to.

    Wishing you all the best with the decisions you have ahead of you.

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi, I’ve been brca2 positive for around 5 years now, and always knew that at some stage I would have the preventative surgery, but just like you when’s the right time??  

    Because I decided to have reconstruction from my tummy and not implants it was decided because of the length of time of surgery I would try and lower my BMI, but have really battled with this.  So I’ve decided to progress in stages, I.e breast reduction first and then reconstruction.

    so eventually I have my date 12th January - my choice, however it’s real now and just struggling a little.  Just feeling a need a little support but unsure where to turn.

    Any help/feedback greatly received.

    hope you’re all well! 

  • Hi EJCx, 

    Nice to meet you and thanks for sharing your experience! You're definitely not alone in this situation so hoping I can say something that may help in some way.

    I'm 33 and living with a BRCA2 faulty gene too. My mum had both ovarian and breast cancer in her 30s / 40s and found out she had the gene after her last surgery. I found out in Sept 2019 i had it too and decided then for the time being to opt for the prevention monitoring service on the NHS. I've just got home from my 3rd annual MRI today and have my gynae appt in Jan where they do an ultrasound scan and take a blood sample. When it comes to surgery I'm still unsure on timings and wanted to see how this approach felt first! I've had a good experience thus far but surgery does cross my mind a lot and when I'll make that decision on that.

    A lot of advice I was given initially was around children. Did I want them? if so, did I want to breast feed? I'm still unsure if children is something I want so I'm in a bit of limbo at the moment and deciding on timing of the surgeries available as I definitely will have one option one day. Alongside or as an alternative to the mastectomy there is a new surgery called oophorectomy which I believe may still be in study phase. That means removing ovaries through keyhole surgery which they say may reduce risk of both ovarian and breast cancers. My gynae has also suggested egg freezing or IVF as an option for future pregnancy via surrogate if I decide to go down that route.

    I've spoken to other gene carriers since my diagnosis who I've met through forums online and they have had successful breast surgery and they went ahead at 33 and 30, it completely depends on you, your life priorities, whether or not you want children and when so a lot of factors to weigh up. It's such a personal choice and there's no rule book, but for me it's helped speaking to others about their experience to try and form my own opinion with all that knowledge, so good for you for reaching out on here.

    I was offered therapy through my local breast clinic so there is extra support available to talk through your options out there too.

    Hope that is in some way helpful. I'm here if you want to ask any questions around my experience with the screening programme, BRCA2 diagnosis or my decisions so far.

    Wishing you all the best with everything :)

  • Hi, I am 33 and was diagnosed with Breast cancer over a year ago. I knew we had a strong family history but I wasn't entitled to genetic testing as it was my dad's side of the family and too distant. 

    However, when I was diagnosed I was offered testing and it came back that I have the BRCA 2 mutation. 

    I honestly wish I pushed them more to do the testing and although it's not a simple operation, experiencing breast cancer at 32 has made me realise how important a mastectomy is. If I could recommend anything, it would be not to wait. 

    I didn't get my results till after I had had a therapeutic mammoplasty to remove the cancer, so I'm still waiting for a mastectomy and I feel like a ticking time bomb. 

    Sorry you have to make these decisions.