Hi everyone
I am new to this forum but have found it very helpful over the past year since finding out I have the BRACA gene mutation. I an 36 and have 3 children. I have my ovaries and Fallopian tubes removed in February. I have have had a double mastectomy with reconstruction 5 weeks ago.
It’s been a tough thew months with lots of ups and downs but if anyone is interested I would be happy to share my journey with you all. I got haematoma after having my breast op so had to be re-admitted to have it drained and my drains put back in which I found really hard to deal with.
My sister also has the faulty gene, she is 31 and has 2 children. She had a scare after having her MRI. She had to go back in and have a biopsy. We then had to wait a week for her result but we all feared the worst but thank god it was benign. She just needs to have MRI’s every 3 months because she is high risk. She is going in for the breast op as soon as they can. They have opted to do the op where they take skin from her tummy and rebuild her breasts.
We both said once we have fully recovered we would both like to help others in are our position, as with us having the two different op’s, we could share our experience to others as we also didn’t feel like there was much support from people who had actually had the procedures done.
Hope this helps
Hi Lillyrubenjude
It’s Emily here from Breast Cancer Care.
Thank you for your kind and supportive message to other people on the Forum. I’m sure your thread will bring help and reassurance to women in a similar position to you and your sister.
I also wanted to let you know that we’re currently recruiting for new Someone Like Me volunteers, and I wondered if this may be a role that’s of interest to you. Someone Like Me volunteers give support to others by telephone (and sometimes email) who are going through a similar experience to their own. It may be for practical tips around what to expect from reconstruction, or emotional support around their diagnosis. In particular, we’re keen to recruit more volunteers who have had a genetic diagnosis and preventative treatment, as you have. We’re currently recruiting in Central and South England and Wales. If you’re interested, you can find out more here:
breastcancercare.org.uk/get-involved/volunteer-us/be-support-service-volunteer/someone-me-volunteers
Thank you
Best wishes
Emily at Breast Cancer Care
Hi I have just read your story , you both have been remarkable. So my story is this , I found out had grade 3 breast cancer in sept 19 .went straight into chemo then surgery for lumpectomy. Finally got the results for braca 2 and at risk of coming back in breast and ovaries. Will be talking to plastic surgeon re mastectomy and which type of reconstruction .think I prefer to use my own body fats if possible .what did you have put in and will defo be taking my ovaries out without a doubt