BRCA2 Gift?

Hi Rachel,

You sound totally normal to me! It IS both a blessing and a curse. It's a curse in that we would definitely rather not have it, but it's a blessing in that it allows us to make proactive decisions. I got my BRCA2 diagnosis waaaaaay back in 2001, when these tests were new. My mother had just been diagnosed with breast cancer and tested positive for the gene. I was still really young and thought maybe I would want to have kids some day, so despite the fact that the ovarian doc I spoke to wanted to have my ovaries removed right away (!!!) I just let it be for twenty years. I did end up having two kids (now ten and fifteen) and was finally ready to proceed with prophylactic surgeries in 2017. I had a hysterectomy in 2017, double mastectomy in 2018 and reconstruction through 2019, finally wrapping it all up in Feb of this year. It was difficult, no doubt about it, but I am so relieved I did it. I guess the point is, I had twenty years to process everything! You've only just started! Please let me know if you want to reach out and learn more about my own experience. Hang in there, and don't worry about getting a grip on yourself!

I also am BRCA 2 and to date have had not had ovarian or breast cancer.  My elder sister died of ovarian cancer and my younger has had breast cancer.  

I have talking to the genetics counsellors at Guys helpful and somewhere to be frank and honest.  Likewise my breast surgeon

I have been honest and straightforward with my 3 sons.  It was initially hard to talk about it with them but they knew I was having tests.  My eldest son has been tested and and he was negative. Again Guy's helped him to think to think what he would say to his 2 girls if he had been positive  The tip to make it part of your narrative.

To be honest it is both a blessing and a ??????   It was my decision to be tested.  Most days on balance I think it was the right decision. Knowledge is power.

I hope that helps.

This is not a gift.

This is definitely a curse.

And I don't feel selfish or pessimist thinking it.

Is there somethnig worse? Of course.

But... someone wins a lottery.

There is always someone that stays better and someone that stays worse.

We know it.

But brca sucks. 

Fuck brca.

You can be angry.

You have every right to be.

I am angry.

And I don't feel I am wrong.

But at some point, I simply think is useless spending too much time to be upset since it will not change my dna and I go out and live. 

Maybe we cannot add days to our life.

But we can surely add life to our days. 

Hi Rachel,

This is a fantastic place to vent and feel free to do so when you feel you need it. Knowing you have the BRCA Gene all depends on what sort of a person you are. Me knowledge is power,  so although I was diagnosed with BC first then BRCA 2 gene I felt positive about knowing as that gave me enough information about know what treatment to choose. So I went for a Bilateral Mastectomy and Diep Flap then Ovary & Tubes removed. I like you thought if I have full preventative surgery I wouldn't have to go through a diagnosis but unfortunately even after preventative surgery you can still end up having a cancer diagnosis. I was diagnosed with a Reoccurrence in exactly the same breast and the same place. So my advise to you would be even though if you have the preventative surgery, please always still do your regular breast checks.

Take extra care of you!

Cheryl Xx

Hi Ricki! 

Could you tell me more about this Guy's organisation? I've got a mastectomy coming up and I'm looking for some counselling specific to my situation! 

Thanks ️

Hana

Hi

I was referring to Guy's Hospital who have been very helpful. Since I posted my response I have been diagnosed with TNBC and had a double mastectomy Macmillan offer a counselling service which I have found helpful..

Speak to your BCN and ask what is available in your area.

All the best