Hi everyone had surgery and chemo last year and on herceptin until end of november. Ive been fab and positive but have now hit a brick wall. Went away for a lovely weekend and came home to a letter from genetics, brca2 gene positive. To say im heartbroken is an understatement and so hoping this feeling will will pass. Thank you all for reading x
4 Likes
@julesjp I can imagine that is hard to get to grip with. I’m so surprised you were advised by a letter rather than a phone call or appointment. The genetics team in Wales said they would send a letter to book a phone call or they could call me as soon as they had the results. I went for the second option and for me it was negative.
I wanted to offer you some useful links
This is for those who live in Kent but the resources are for everyone. Elizabeth is lovely.
1 Like
Thank you so much, yes im in cardiff the letter arrived on weekend and waiting for appointment now. As my family said im under the umbrella now so will get the best care x
3 Likes
As you are also HER2+ you may like to join a very friendly thread called HER2+ and need some buddies.
I hope you find out more at your appointment.
1 Like
Hi @julesjp, sorry to hear about your result. It’s a lot to get to and it’s not too nice for them to send you a letter before the phone call. You must have a lot of questions you want to ask.
I was diagnosed with BC 2 years ago ER+ HER-. They found multiple lumps in my left breast so mastectomy was recommended. Due to my family history, genetic test was requested and similar to you, I have BRCS2 gene too. Since I always suspected that’s the case, I’m emotionally prepared. However, what came next was still hard.
With BRCA2, the recommendation is to remove the ovaries and the other breast. Since these are not urgent cases, the wait to schedule the surgeries took more than 18 months. Within 24 months, I had 3 surgeries. The last one was done 4 weeks ago. Now that I’ve done all these, I’m feeling more at ease. I no longer need to do mammogram （I’ve done 4 mammograms in the last 2 years). Now I can focus on regaining my strength and energy.
I wish you all the best! Whatever decision you made is the right one.
3 Likes
Thank you for your reply. I just had 2nd mastectomy in november and feel amazing. Im giving myself a year to let my body heal from both mastectomy , chemo etc and then will have ovaries and tubes done xx
2 Likes
@julesjp wishing you lots of happiness going forward my brave girl.
Hugs Tili 
1 Like
Thank you x
1 Like
Hi all, bringing this chat back to life as ive just had the confirmation of the BRAC2 gene.
Interestingly I just found out we all have the gene, the difference is mine (ours) are more likely to mutate differently. Or something similar that, ive not researched it too much yet.
I feel a mix of things really, worried about it but also glad I know. I feel like a weight has been lifted, that I didnt cause this (which non of us do!) Yes had I known from an early age maybe I could have changed my lifestyle etc but there’s no point looking back. I know now.
Ive been told I’ll have a phone meeting in the next 4-6 weeks to discuss. Then any surgery I choose will be booked into for 18-24 months later. What a waiting list! Though atleast I have some recovery time and a lot of time to think about things.
Just wondering if I still need radiotherapy if I know I’ll have mastectomys?
Just read a couple of you have already had surgery. I hope you are all recovering well?
2 Likes