By Leighann Sturgin
My Lynch Syndrome comes from my Dad’s side of the family. We have the MSH2 gene mutation. My dad has had several polyps removed during colonoscopies over the years and has had several spots of skin cancer. (Both squamous cell and basal cell are related to Lynch.) Two of 6 of my dad’s siblings have had colon cancer in their 30’s. There is more colon cancer in previous generations too. There are 13 grandchildren on my dad’s side, myself, 2 brothers and 10 cousins. I’ve been telling all of them to get a colonoscopy since I was diagnosed 12 years ago at the age of 30. Some of them having taken this seriously and have been screened, others have stuck their head in the proverbial sand and want to think this isn’t going to happen to them.
Even though both my aunt and uncle had colon cancer in their 30’s no genetic testing was done until I was diagnosed in 2004, then the MSH2 gene was found in all 3 of us. Genetic testing is expensive and often not covered by insurance (unless you’re the one with a diagnosis). A genetic counselor told me the rest of the family didn’t need to have the genetic testing. They just needed to be screened as if they had the gene. I’ve been telling my family “I did this so you didn’t have to.”
I posted this picture of my dad and brothers. Actually, two of these guys are my brothers and one is my cousin who lived with us for a few years when we were in junior high and high school. I love him like a brother. All three look so much alike it’s hard to guess which one is which. For me it doesn’t matter, they’re all my brothers. I love all three of them.
Two weeks ago I was with family for a baby shower when I made the comment “I’m glad it was me and not one of them. I wouldn’t wish colon cancer and all I went through on any of them. They probably would’ve died.” I wasn’t trying to boast or pat myself on the back for my “strength”. I was simply glad it was me and not them. It really sucks to see someone you love suffering. Two days after making that comment my older brother was in the ER with an appendicitis and high fever. His appendix ruptured and he was septic. He had an emergency appendectomy and colon resection. After the surgery the surgeon informed my sister-in-law his colon didn’t look healthy and mentioned the possibility of Crohn’s disease. When the surgeon was informed of the Lynch Syndrome he became “more concerned.” We had to wait a few days for the pathology on the part of his colon that was removed. It was, of course, positive. He has stage 3 colon cancer. His head WAS in the sand. He never had a colonoscopy. I was SO angry and sad. I thought, maybe if I had hounded him more to get a colonoscopy; maybe I should’ve paid for it for him; I should’ve done more. I’m an advocate. I talk to people all the time about getting screened. I go to Washington DC to lobby congress for better screened guidelines and funding to educate the public on the importance of screening but I failed my own brother. He says it’s not my fault, that nobody could ever make him do anything he didn’t want to. He says he’s not going to ignore anything now. He’s going to fight so he can watch his son grow up. But it didn’t have to be this way. If you have family history of colon cancer, especially when people in your family have had it under the age of 50, you need to get a colonoscopy. Don’t think this can’t happen to you.
You are not special. Cancer doesn’t discriminate. One in 21 men and 1 in 23 women will be diagnosed with colon cancer in their lifetime. According to the American Cancer Society you are at an INCREASED risk if you have family history of colorectal cancer or adenomatous polyps. This means you need to share the results of your colonoscopy with your family. If cancerous polyps are found and removed BEFORE they turn into cancer, your family is still at an increased risk. Screening should start at age 40 or 10 years before the youngest case in the immediate family and you should be screened every 5 years.
If you have a family history of Lynch syndrome or HNPCC, according to the American Cancer Society, you are at HIGH risk and should be screened at age 20-25 or 10 years before the youngest case in your immediate family, you should be screened every 1-2 years and have genetic counseling.
I’m so sad because I know better than anyone what the next 6 months are going to be like for him. I know the chemo he’ll have to endure. I know how hard it is to adjust to the new ‘normal’ of life after cancer. I know what reoccurrence looks like. I didn’t want that for him. I’m sad for his wife and son too because I know that cancer happens to families. I’m sad for my parents who have to watch another child suffer through this horrible disease.
When talking about his diagnosis, my sister-in-law posted this on Facebook “How do people with no faith in a healing and redeeming Savior manage to get through these challenges in life?” I agree. I will continue to pray for my bother but it didn’t have to be this way. This all could’ve been avoided if he’d had a colonoscopy. I understand it’s hard when you can’t afford it. I understand he would’ve had to pay for it. When the colonoscopy costs $1000 and your deductible is $1500, YOU HAVE TO PAY FOR IT! The colonoscopy is so much cheaper than surgery and chemo. I will continue to pray that somehow beauty comes from this pain. I’m praying this brings my brother closer to Christ. Closer his family. And he learns to live a better, healthier life with his head out of the sand.
I told my brother to look on the bright side, he doesn’t have to worry about losing his hair to chemo (see picture) and Pennsylvania just passed medical marijuana for cancer patients. That got a little chuckle out of him. At 45, he shouldn’t be looking for the bright side of cancer treatment, he should be enjoying his life and watching his son grow up. Please…please…please get screened NOW if you have a family history of colon cancer.
And to all my cousins who still haven’t had a colonoscopy…I’m coming for you. No more heads in the sand. I love you too much.