Back in May I finally did something that’s been on my shoulders for awhile. I got tested. Mom’s got it, her mom had it. Do I? That was the big question looming in the air for almost 2 years. Various reasons came up at different times about why I couldn’t get it at the moment. But finally I did. And I’m positive.
Me and many in my mom’s side of the family have Lynch Syndrome (HNPCC). It’s a genetic mutation in a gene that predisposes you to getting certain types of cancer. Of all the stuff you read about it they all really come down to “it’s a matter of when you get cancer not if”. We didn’t find out our family had it till about 2 years ago when my mom got in touch with some long lost cousins and in catching up they shared that one of the young men in the family got colon cancer and they screened him for HNPCC and he was positive. Slowly all the family started getting screened and they found out that many people in the family had it.
So mom got screened and she was positive. Then she started the process of testing for uterine and colon cancer (the two main manifestations of our strain of HNPCC). Because ultrasounds and biopsy’s aren’t 100% accurate (there are many layers in your uterus and the biopsy only takes tissue from the innermost layer) her biopsy didn’t detect that she had it. But God led her gyno to encourage her to get a hysterectomy because she wasn’t having a typical journey into menopause.
So she did and they found her cancer in between layers in her uterous. If she hadn’t gotten it taken out, she would probably be fighting for her life right now, and it would be too late. Just like her mom’s journey.
So Iv’e got it. And there was a small relief that at least now I knew, there was no looming question. It’s fair to say that I just traded one question for an even bigger one. Do I currently have any cancer? And later the question becomes : When will I get cancer?
This past weekend we were in Delhi for so many wonderful reasons. Malachi turned 6. We celebrated our 10 year anniversary. Devon had their baby. I got 5 out of 7 tests done.
The mammogram I wrote about, cause it was just comical. But instead of “save” I pressed publish when I wasn’t quite done writing it up, and also I hadn’t gone public with my HNCP. So if you are amoung some of the ones that read the partial story and were left wondering about it, this is what it was all about. You might want to go back and re-read it cause I finished it and grammar checked it.
My colonoscopy checked out great. And it wasn’t as bad as I’d heard. My IVC (uterean ultrasound) turned out great too. My mammogram needs further tests, most likely because of my size I have denser tissue and my age contributes to that too. We are still waiting on results from my uteran papsmere and culture. And in early November right before we fly out for the states I will get a blood test and a breast ultrasound, possibly a biopsy as well.
So I am almost done answering the second question, “do I have cancer now?” And yah! I know that third one is more stuck with you. When will I get it? But I really don’t feel like this is a death sentence. Something that I have to let rule my life, or even define me.
What it is, is God’s grace on our family. Bringing something dark, that has “taken out” so many people, into the light.
We have knowledge, and power. We can fight this. I can get tested regularly. Eat wise, exercise, and previve.
It’s really huge that we know about this. Estimates say that 1 in 35 people diagnosed with colon cancer have HNPCC. 600,000 people are predicted to have HNPCC in the US alone. Can you imagine how steps to get tested and previve can dramatically impact our cancer deaths each year? HUGE. God’s grace.
I predict that as the awareness spreads in the coming years that not many people in the world will not know what Lynch is. It is not racially bound. My Indian Oncologist practiced in London when he first learned about HNPCC from a string of arabian muslim brothers that all had colon cancer. They discovered that they too had HNPCC.
Because I am so grateful to know what we are up against and to have a fighting chance, it makes me want to dance, like this. Maybe when I get to the states I will get to participate in spreading awareness in this way. Arwyn can’t wait to do one. My mom’s gonna get roped into it. And maybe some of you too! Especially if you have loved ones that died or survived cancer, I am comin for you. You know you want to dance with me!