New findings show colon cancer is striking more and more young people than ever before. Carole Motycka is one of them. Not long after celebrating her fortieth birthday with her husband and four children she was diagnosed with Stage 4 colon cancer and given only months to live.
But thanks to an experimental liver transplant at the world-renowned Cleveland Clinic Carole has a new lease on life. She also owes her survival to a fellow church member who donated his liver to Carole after reading about her in the church bulletin.
To look at her, Carole Motycka appeared the very picture of health. She ate right and regularly exercised. In fact, after a particularly strenuous hike with her husband, the mother of four experienced a little pain and went to the doctor.
Expecting him to say she probably worked-out a bit too hard, she was stunned to hear him tell her she likely didn't have long to live.
"He said, 'I believe you have a large tumor in your colon and I believe cancer from your colon has gone into your liver,' and he said, 'This is probably the worst-case scenario," she recalled.
Reeling from the terminal diagnosis, Carole began treatment right away. The good news is surgeons were able to remove the diseased portion of her colon.
However, doctors couldn't operate on her live liver because the cancer was too widespread in the organ. Cleveland Clinic's director of liver transplantation Dr. Cristiano Quintini explained why.
"In order to perform successful liver surgery for patients with cancer, you need to be able to preserve at least 25, 30 percent of the native liver," he said, "Otherwise the patient will not be able to recover. Often when we discover cancer has metastasized to the liver and more than 75 or 80 percent of the liver is involved, surgery would be very dangerous, in fact impossible."
With that in mind, Carole's doctors explained chemotherapy alone was the standard treatment recommendation. They said the average survival rate for patients like Carole was just two years. At that moment all she could think about was her family.
"My kids, certainly," she said, "You know, we always think that tomorrow is there. And we always look long-term. So they instantly came to my head. Am I going to see them grow up?
Then a glimmer of hope-doctors at the Cleveland Clinic told her although surgery is usually not an option for people with her diagnosis, there was something new on the horizon. She was eligible for an experimental liver transplant that would require a donation from a live person.
"Basically it consists of removing 60-percent of the liver from a healthy donor and transplanting that part to a person that is in need," explained Dr. Quintini, "The liver is an amazing organ. You can remove about 70, 75-percent of somebody's healthy liver and expect regeneration between four and six weeks."
An Unlikely Donor
Carole agreed to the experimental surgery and started looking for a donor. Her pastor at St. Mark's Lutheran Church in Van Wert, Ohio, where she served as a youth director, wrote about Carole's need in the Sunday bulletin.
"The very second I saw that and started reading it, I just had this feeling come over me that, 'This is going to be you. You need to do this,'" recalled Jason Stechschulte, "It was so strong that the rest of the service I don't remember anything. I don't think I paid any attention to anything anyone said."
Jason's wife wholeheartedly approved of her husband's desire to help a fellow Christian in need, even though it would place a good deal of stress on their family of four. Next step: Cleveland Clinic for testing.
Jason learned he was a perfect match but before committing to the procedure, was warned by doctors that giving-up two-thirds of his liver, which he was told would grow back in a couple of months, would be hard.
"They have to be willing to undergo a major operation and a recovery that sometimes is quite involved," said Dr. Quintini, "One other complication of a living donor is about four to six patients in a thousand will die as a result of living donations."
Despite the risks, Jason agreed to the transplant, even though he barely knew Carole, who described finding out she had a donor.
"It was a blessing to me. I think I cried for a week," she said, "Jason is cool as a cucumber. He called me, actually Facebook-messaged me and said, 'Hey I'm going to be your liver donor,' and I was like, 'What?'"
Back to Normal Life
The difficult surgery was a complete success. Carole and Jason, who are now good friends, both recovered beautifully and feel great. Now Carole relishes every moment of life, especially those with her husband and sons.
"It's given me the chance to see my John, he's graduated now. And my Joseph is going to graduate. And my Nick is at Dartmouth. And I didn't know that I would get to see Drew graduate from high school," she smiled, "But I get that opportunity now because of what Jason has given to me."
Jason embodies humility.
"So many people have come up and said, 'It's so great what you did,' and, 'It's amazing. You're such a great person,'" he said, "And I always have to step back and say, 'No, it's not. You don't understand. I was called to do this.'"
Thanks to the transplant, doctors estimate Carole's chance of survival increased from 10-percent to 60-percent after five years. This is great news for Carole and others like her with colon cancer that has spread to the liver.
Dr. Frederico Aucejo, surgical director of the Cleveland Clinic liver cancer program said, "Here in the United States we have been the first health care place that incepted a protocol to apply liver transplantation for patients with unresectable colorectal cancer liver metastases."
A Genetic Breakthrough
In addition to performing surgery on Carole, doctors at Cleveland Clinic also tested her DNA. They found what they believe led to her colon cancer at such as young age and likely the cause of others'.
Doctors now know mutations in either the BMPR1A and SMAD4 genes can cause precancerous polyps to form in the colons of teenagers. If left untreated, these polyps can develop into colon cancer, which can spread to the liver.
Since these genetic mutations are usually inherited, Carole's children underwent genetic testing to see if they, too, have the problem genes. Turns out, two of them did.
Because of that, both of them underwent colonoscopies, at which time doctors discovered trouble. However, because the problems were detected so early, they were successfully removed before becoming life-threatening.
"Jonathan had several polyps removed. Joseph, who was 20 years old, had three pre-cancerous polyps," Carole said, "And so, through my diagnosis, what greater gift could I give, as a mom, besides teaching my kids to love Jesus and to be compassionate young men? I was able to give them life again. They will never have to deal with this. They will never have to go through what I've had to do."
Spreading the Word
Carole is using her story as a way to raise awareness about early detection. She hopes all young adults will ask their relatives if there's a history of colon cancer in their family and if so, will undergo genetic testing to possibly discover and treat the early stages of the disease.
"I can be a vessel there with teaching and using my voice to advocate for genetic testing and for earlier colorectal screenings," she said.
However, for those like Carole, who aren't diagnosed with colon cancer until it has spread to the liver, they too have new hope with the groundbreaking liver transplant she had.