After Sam's father was diagnosed with breast cancer in September 2013 and tested positively for the BRCA gene mutation, Sam and her brother also decided to get tested.
"I knew men could get breast cancer, but this was still quite a shock. His treatment was the same as it is for women: chemo, radiotherapy and a mastectomy. Thankfully he was given an initial ‘all-clear’ in the summer of 2014.
After Dad was diagnosed, he was tested for the BRCA mutation, because of the rarity of male breast cancer. We also have Ashkenazi Jewish ancestry, albeit in the dim and distant past, which dramatically increases the risk of having the BRCA genetic mutation. Dad was found to be positive for the BRCA2 mutation. My brother and I were both tested, and discovered that we’re also both positive.
This information was helpful to my dad’s treatment, because even though he was given the ‘all-clear’ by his oncologist from the breast cancer, he was told that it was very likely the cancer would come back, as the BRCA mutation makes cancer ‘extremely aggressive’. Sadly, this proved to be correct, as Dad was diagnosed with terminal brain cancer in December 2015 and passed away in August 2016.
Obviously this is a sad story so far, and no doubt resonates with many of you reading this, although not necessarily your dad as the carrier of the BRCA mutation. But men can get breast cancer, and they can carry the BRCA genetic mutation and pass it on to their children – you just don’t hear about it as often. Even the genetic counsellor told me she was surprised Dad was positive, and this was her specialty. So if you remember anything from my story, please remember that men can pass on the BRCA mutation.
"I took the route of doing everything I possibly could to prevent getting cancer so that the knowledge my dad gave me, which he ultimately paid for with his life, was not wasted."Sam Schinkel
So what happens if a man is BRCA+? It still has major consequences for him. My brother has an annual prostate screening. Initially he had an MRI so they had a baseline for comparison, and he now has an annual blood test and a prostate test with a urologist, which he says isn’t pleasant, but my answer is always, “Try being a woman!” His risk of breast cancer is higher than an average man’s risk, but he is aware of that and knows to check himself and go straight to the doctor if he finds anything.
My choice, once I found out I was BRCA+, was to have a bilateral salpingo-oophorectomy (ovaries and Fallopian tubes removed) in 2015. I also opted to have a bilateral mastectomy with DIEP flap reconstruction, where they reconstructed my breasts using flesh from my stomach, in 2016. Lots of women have told me, ‘Oh, that’s brave’, but to me, fighting and beating cancer is brave. I took the route of doing everything I possibly could to prevent getting cancer so that the knowledge my dad gave me, which he ultimately paid for with his life, was not wasted. I knew about my high risk so I could do something about it. Even though the decision seemed clear to me almost immediately, the operations and my recovery were tough at times. That choice isn’t right for everyone, especially for younger women who want to have children in the future. I feel lucky to have known about my risk, because so many women are walking around unaware that they will get cancer. I don’t regret for one minute my decision to be pro-active and have the operations. I also had superb care from the medical teams during my NHS treatment, and have met some amazing and inspirational women along my journey.
If anyone wants to talk to me about any part of this story, please contact Ovarian Cancer Action and they will put us in touch. I hope that something positive will come out of this, and I can help others who are BRCA+ and special, like me.