LeeS
13 years agoMember
Brca1
So, here's my gripe. I would have had the bilateral mastectomies over 5 years ago,Without even knowing about breast cancer genes, when I was first diagnosed with breast cancer but I would have to have waited a few weeks to get the surgeons together and I the cancer was aggressive and i guess i was also convinced by my surgeon really that a lumpectomy with chemo and radio would do the trick and, since I was young (38), i might as well keep my boobs.
Well, seriously, don't you think that even without having proof of family history of brca1gene mutation at that point, the fact that my bc was triple negative and I was young and it was aggressive should have pointed to the possibility, however unlikely, that I might have a breast cancer gene mutation? Shouldn't one of my numerous specialists have alerted me to this and given me the opportunity to be tested? It doesn't matter how expensive it might be, it should be offered to the patient and it should be their choice.
I only recently found out that I had the brca1 mutation because a distant relative was doing the family tree and saw a high incidence of breast and ovarian cancer. She went to a geneticist to ask to be tested and it came back with no evidence. Thankfully, she insisted on them doing further testing and voila' , the brca1 mutant gene was found.
Dad met up with his cousin earlier this year at a family function( which isn't common practice for him) and she had just tested positive to the the brca1 gene mutation, past down from her Mum( Dad's aunty). His mum died too young so we don't know if she would have developed BC. It was suggested however that I think about being tested.
Well, when I took this info to my GP I was told it would be highly unlikely that I would have that inherited gene, that the family history isn't strong enough. Hello??
Fortunately, I was due to see my breast surgeon, for my annual check a week or so later. He passed the info onto his genetecist, a new member on the team, saying there's almost definitely enough evidence to do the testing and that he probably would have been calling me in to get tested this year anyway, thanks to their most recent studies and links etc.
Obviously it's easier to test for a particular strain of the mutation than going in blind but it's not impossible, as my distant relative in Tasmania found out.
Anyway, to bring the story to now, over 5 years since my breast cancer journey began and a proven mutant brca1 gene, I'm waiting for pneumonia to clear before I can have surgery. I was going in for skin sparing bilateral mastectomies with tissue expander and lar dorsi this Wednesday coming. (When that process is over I'll get rid of the tubes and ovaries.)
Unfortunately I've been sick with flu that only reminds me of how I felt with chemo. And just to top it off I developed pneumonia.
Now I've found a lump in my breast but have to put surgery off. (fingers crossed the lump will be nothing bad)
But See? If I'd been offered the genetic testing earlier I wouldn't be in this predicament now.
I don't know how clearly I've explained all this but I welcome feedback from anyone who can relate in some way to this post.