“They were like, ‘No, it’s a brand-new primary cancer. It’s not metastasized breast cancer.’ But I was pretty sure there must be some kind of connection between the two cancers. Two primary cancers in your 40s – that is very odd.”
Carrie had surgery to remove part of her colon. During that procedure, the surgeon noticed that the nearby lymph nodes were hard and inflamed, which he said indicated that the cancer had almost certainly metastasized. The ensuing tests revealed that the cancer had not, in fact, metastasized, and that the inflamed lymph nodes had been the cause of Carrie’s New Year’s pain.
“Those lymph nodes maybe saved my life,” Carrie says.
After the surgery, Carrie was declared cancer-free for the second time. She didn’t need any chemo or radiation, but her oncologist wasn’t ready to let her go.
“I think at that point, he and my husband and I were all on the same page. This was just too coincidental. I remember having that discussion and [my oncologist] put us in touch with the genetic counselors at the University of Wisconsin.”
Carrie met with a genetic counselor who explained the tests and every possible outcome. She went through the short test procedure when the results came back, they showed that she carried a mutation in the MLH1 gene, indicating that she did, in fact, have Lynch Syndrome.
“And…I felt very overwhelmed,” Carrie says. “I felt mad, I felt despondent…I felt like my body was betraying me.”
“I was used to thinking of cancer as this mass that has invaded my body,” Carrie wrote in her blog. “The reality is that every cell in my body is mutated and unable to catch the genetic typos that most of the population does with ease. If my cells were an English term paper, I would get a D.”
After her diagnosis, Carrie worked with the genetic counselor to spread the word to the rest of her family. Carrie has eleven first cousins on her mother’s side, and according to her pedigree, all of them were at risk of also carrying Lynch Syndrome. The genetic counselors provided a detailed letter to send to the family, and Carrie drafted her own personal note.
“Dear Mom, Sisters & Cousins,” she wrote, “Enclosed please find a letter that I send to you with a heavy heart […] As such, there is a 50% chance that you also have a mutated MLH1 gene and are at a greater risk for certain kinds of cancer.”
“My greatest hope is that each of you tests negative for Lynch Syndrome. You are in my heart and thoughts,” the letter concluded.