Riley
“I am grateful to know that the genetic mutation for Lynch Syndrome stopped with me!”
Riley
What were you doing when you were 24 years old? Were you finishing a degree? Getting married? Having a child? Or were you learning you were diagnosed with a terrifying disease?
I was 24 years old and 17 weeks pregnant when a doctor I had just met told me I had colon cancer. He had no answers—he didn’t even know the stage. He described my diagnosis at my young age while pregnant as “like being struck by lightening and bitten by a snake at the same time.” I had been experiencing pain since the beginning of my pregnancy, and when I underwent exploratory surgery, the surgeon expected to find a twisted ovary. The colon cancer discovery was totally unexpected. So was my newly placed colostomy bag.
After healing from my surgery, I was sent to a bigger hospital, in a bigger town, in a bigger state—Texas. During my 5-day stay at the new hospital, I had a new team consisting of high-risk OBs, a top oncologist, and ostomy nurses. They determined that my cancer was Stage 4—the worst-case scenario—and suggested I go to M.D. Anderson—an even bigger hospital—for another opinion.
I spent many days at M.D. Anderson undergoing tests, blood draws, ultrasounds, and meetings with physicians and counselors, including a genetic counselor. The genetic counselor advised me there was a possibility a genetic mutation led to my colon cancer at such a young age—which was oddly comforting to me. I agreed to genetic testing—hoping to learn why I had this “old man’s disease” at age 24.
While awaiting the genetic testing results, my oncologist met with me to discuss what moving forward with chemotherapy looked like while I was pregnant. The plan was for me to start chemo ASAP at home and then go back to M.D. Anderson after I had my baby. After returning home, I finally received the phone call I had been waiting on for weeks. The results of my genetic testing showed that I DO in fact have a genetic disorder called Lynch Syndrome. Lynch Syndrome causes an increased risk of developing certain types of cancer, including colon and rectal cancer, as well as cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, skin, and prostate. Women with Lynch Syndrome also have a high risk of developing uterine cancer (also called endometrial cancer) and ovarian cancer. Although learning I had Lynch Syndrome could have been overwhelming—for me it was great news because I had an answer! Armed with the new information provided by genetic testing, my medical team was able to choose the best chemo for me—even while pregnant.
“Learning through genetic testing that I had Lynch Syndrome was life changing for me.”
I had 4 chemo cycles while pregnant, with 2 more scheduled, when on the night of June 10, 2015 and into the next day I was sick to my stomach and vomiting. When I then started feeling “funny” and began to lose my eyesight, I was taken to the E.R. where I had 2 seizures. They sent me to another local hospital, which in turn careflighted me to the hospital where I had been diagnosed with Stage 4 cancer. There I delivered my daughter naturally, and she was perfectly fine and healthy.
After my daughter was born, I returned to M.D. Anderson where I was finally able to have my first CT scan and get a clearer picture of what we were working against. While there, my oncologist ordered a stronger, more toxic chemo that has shown a quicker response rate to shrinking tumors caused by Lynch Syndrome. After 9 rounds of that chemo, I became a candidate for the HIPEC procedure—which is what put me in remission. Today I am almost 6 years from diagnosis and 5 years in remission!
As a social worker, I’m always advocating for others—it’s what I do. But now I also advocate for young adults with colon cancer, because there are far too many of us. Learning through genetic testing that I had Lynch Syndrome was life changing for me. It led my doctors to the treatment which put me in remission. Because I needed to know how to prepare for my daughter’s future, I made the decision to have her undergo genetic testing for the same mutation. Imagine my relief when I learned she tested negative for the Lynch Syndrome mutation. She will still need to be screened with a colonoscopy when she is 10 years younger than I was when I was diagnosed—out of an abundance of caution. But I am grateful to know that the genetic mutation for Lynch Syndrome stopped with me! Genetic testing definitely made a difference in my life!
“I am grateful to know that the genetic mutation for Lynch Syndrome stopped with me!”
Riley
What were you doing when you were 24 years old? Were you finishing a degree? Getting married? Having a child? Or were you learning you were diagnosed with a terrifying disease?
I was 24 years old and 17 weeks pregnant when a doctor I had just met told me I had colon cancer. He had no answers—he didn’t even know the stage. He described my diagnosis at my young age while pregnant as “like being struck by lightening and bitten by a snake at the same time.” I had been experiencing pain since the beginning of my pregnancy, and when I underwent exploratory surgery, the surgeon expected to find a twisted ovary. The colon cancer discovery was totally unexpected. So was my newly placed colostomy bag.
After healing from my surgery, I was sent to a bigger hospital, in a bigger town, in a bigger state—Texas. During my 5-day stay at the new hospital, I had a new team consisting of high-risk OBs, a top oncologist, and ostomy nurses. They determined that my cancer was Stage 4—the worst-case scenario—and suggested I go to M.D. Anderson—an even bigger hospital—for another opinion.
I spent many days at M.D. Anderson undergoing tests, blood draws, ultrasounds, and meetings with physicians and counselors, including a genetic counselor. The genetic counselor advised me there was a possibility a genetic mutation led to my colon cancer at such a young age—which was oddly comforting to me. I agreed to genetic testing—hoping to learn why I had this “old man’s disease” at age 24.
While awaiting the genetic testing results, my oncologist met with me to discuss what moving forward with chemotherapy looked like while I was pregnant. The plan was for me to start chemo ASAP at home and then go back to M.D. Anderson after I had my baby. After returning home, I finally received the phone call I had been waiting on for weeks. The results of my genetic testing showed that I DO in fact have a genetic disorder called Lynch Syndrome. Lynch Syndrome causes an increased risk of developing certain types of cancer, including colon and rectal cancer, as well as cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, skin, and prostate. Women with Lynch Syndrome also have a high risk of developing uterine cancer (also called endometrial cancer) and ovarian cancer. Although learning I had Lynch Syndrome could have been overwhelming—for me it was great news because I had an answer! Armed with the new information provided by genetic testing, my medical team was able to choose the best chemo for me—even while pregnant.
“Learning through genetic testing that I had Lynch Syndrome was life changing for me.”
I had 4 chemo cycles while pregnant, with 2 more scheduled, when on the night of June 10, 2015 and into the next day I was sick to my stomach and vomiting. When I then started feeling “funny” and began to lose my eyesight, I was taken to the E.R. where I had 2 seizures. They sent me to another local hospital, which in turn careflighted me to the hospital where I had been diagnosed with Stage 4 cancer. There I delivered my daughter naturally, and she was perfectly fine and healthy.
After my daughter was born, I returned to M.D. Anderson where I was finally able to have my first CT scan and get a clearer picture of what we were working against. While there, my oncologist ordered a stronger, more toxic chemo that has shown a quicker response rate to shrinking tumors caused by Lynch Syndrome. After 9 rounds of that chemo, I became a candidate for the HIPEC procedure—which is what put me in remission. Today I am almost 6 years from diagnosis and 5 years in remission!
As a social worker, I’m always advocating for others—it’s what I do. But now I also advocate for young adults with colon cancer, because there are far too many of us. Learning through genetic testing that I had Lynch Syndrome was life changing for me. It led my doctors to the treatment which put me in remission. Because I needed to know how to prepare for my daughter’s future, I made the decision to have her undergo genetic testing for the same mutation. Imagine my relief when I learned she tested negative for the Lynch Syndrome mutation. She will still need to be screened with a colonoscopy when she is 10 years younger than I was when I was diagnosed—out of an abundance of caution. But I am grateful to know that the genetic mutation for Lynch Syndrome stopped with me! Genetic testing definitely made a difference in my life!