Today’s story comes from Heni Gullotta.
Describe your BRCA journey in one sentence:
Lifechanging
What made you decide to get tested for the BRCA gene mutation?
I have breast/ovarian cancer on both sides of my family. My older sister tested years ago and was negative but had BC under 50ys. I was at my mamo screening and one if the nurses suggest that I check. My doctor had also mentioned it to me, but I dismissed it, being that my sister was negative. Anyway, the nurse showed me a quick video of HBOC and the BRCA mutation. I did not understand what it was all about. She told me that we could do it right then and there, so I figured surely ok why not? I had no idea what the implications would be.
Are you BRCA1 or BRCA2 positive?
I have the BRCA1 mutation found in the BART rearrangement (del of exons 1-7)
What did you think/feel when you discovered you were BRCA positive? How did it affect those around you?
When I found out I had this harmful mutation, I did not understand what it all meant. I did research and spoke with a genetic counselor to gain a better understanding of what this all meant. I went back to my sister and found out that she did not have the BART done when she tested, so she checked for that and found out that she was positive for the mutation. My middle sister also tested and is positive as well. I do not know what side of the family it is coming from (both parents are deceased) so I sent a letter to all my cousins to inform them in the hopes that they notify their doctor and get tested.
What surgical procedures (if any) have you undergone? If you haven’t had any surgeries, please share why you’ve made these choices. NOTE: If you have experienced a preventative surgery and would like to share that story as well, please let me know).
I found out about my mutation in April 2013. I had a BSO in June 2013 and a PBM in October 2013 with a revision in Jan 2014
How has your BRCA gene mutation changed your life?
This mutation has changed my life by giving me a chance to realize what is essential in life. Knowing before I got a diagnosis gave me the empowerment to change my destiny and that of my family (two daughters). It has been a rollercoaster ride for sure...one that I do not think I will ever get off!
If you could share any tips or advice with women who have just learned they have the BRCA gene mutation, what would it be?
For those who are just learning about their mutation, I would say to stop and breathe. It can consume you, and it will for a while but know that it can and will be OK. I would suggest that they speak with a genetic counselor before making any decisions. For those who are choosing prolactin surgery, I would say that it is not as bad as I had feared not easy by any means, but doable. I would also suggest to them to join support groups like FORCE, My Destiny, BRCA Sisterhood, etc.....through these sites, I have gained so much knowledge, friendship, support, and love. I could not have gone through this without these fabulous ladies!
Tell us how you really feel!