photo by: Contributed Photo

Jason and Tellena Randall are pictured with their three children, from left, Hollis, Adynn and Easton, in this family photo from a few years ago.

Jason and Tellena Randall, of Eudora, were expecting their third baby when they were blindsided by a stage 4 colorectal cancer diagnosis.

“I was six months pregnant when he was diagnosed,” Tellena says. “We were really scared. We thought he was dead; we just thought stage 4 meant he was dead.”

Jason’s cancer had started in the colon but metastasized to the liver, the most common site of colorectal metastasis because of its location and function.

The liver has the ability to regenerate: as long as about a third of it remains functional after surgery, it can regrow and repair itself, medical experts say. But with 14 metastatic lesions on his liver, Jason — age 35 at diagnosis — was told the extent of cancer made him a poor candidate for surgery. Jason’s oncologist at the University of Kansas hospital told him chemotherapy for life was really his only option.

“Due to a full blockage via the tumor and the extent of cancer in my liver, I was deemed inoperable,” Jason says.

Jason began chemotherapy at the KU hospital within a week of diagnosis, and a few months later, he left a chemo session to go home to support Tellena as she gave birth to their baby. Sick and irritable from extensive chemo, Jason yearned for other options, but his oncologist was adamantly against surgery.

“She said, ‘We’ve never seen anyone with that extent of disease recovering after surgery. It might hurt you more than it would help you,'” Jason says.

No surgery meant chemotherapy treatments to prolong his life. Jason and Tellena wanted more than that. They wanted to obliterate the disease. Dissatisfied with his options, Jason joined a colon cancer support group on Facebook called Colontown, which is run by colon cancer survivors and family members of those who have lost loved ones to the disease. Colontown led Jason to a surgeon in California who provided a better prognosis.

Dr. Yuman Fong, chair of the Department of Surgery at City of Hope, a National Cancer Institute-designated comprehensive cancer center near Los Angeles, told Jason he was a perfect candidate for liver surgery. And if the liver surgery didn’t cure his cancer, it could greatly extend his life.

“(Cancer patients being told their cancer is inoperable) is not a rare thing,” Fong says. “Less than 10% of patients make it to us. A lot of people are left to die.”

Fong says there is a misconception even in the medical community that metastatic cancer represents death. When cancer has traveled to the liver, versus other organs, the prognosis is not necessarily fatal, because of the liver’s ability to regenerate itself.

“With colon cancer, the reason it appears in the liver so much is the liver’s job is to process food. Whenever someone has cancer in the intestines, if it gets in the blood it will get in the liver,” Fong says. “We thought everyone (with liver cancer) was a goner in the 1980s. But with CT scans we noticed (the cancer) never goes anywhere else if it’s in the liver. … Even if we don’t cure them, if someone has disease in the liver, they can live a lot longer.”

The Randalls felt they didn’t have anything to lose, so they headed to California for the surgery.

“Our oncologist was like ‘No, this is false hope,'” Tellena says. “She was fighting for us against the surgeon, but it was our choice. We did get her blessing in the end so we could do it.”

“Dr. Fong changed the entire prognosis and pretty much saved my life for the second time during this whole cancer thing,” Jason says. “My doctor kept telling me chemo for life, no surgery, no options. That’s why I got a second opinion. Like Fong said, only 10% ever get referred to a surgeon from their oncologists. I took it upon myself to seek that referral. My oncologist is a believer now for my case. I don’t know if she would refer anyone else to Dr. Fong or a similar surgeon, but I would certainly hope she would.”

The liver surgery enabled Jason’s prognosis to shift entirely, but what followed wasn’t an easy journey. Jason has had six surgeries, 34 chemotherapy treatments, 28 radiation treatments and five colonoscopies, plus a chemo leak from a take-home pump that caused chemical burning. He had to have a mass removed — as well as his rectum and tailbone removed. Jason now has to use a colostomy bag. In spite of all this, he is now what is known in the cancer world as NED: No Evidence of Disease.

“I am fortunate enough to have a wife that was there for me and was able to take on a lot of different things when I wasn’t able to,” he says. “I cannot tell you the feelings and emotions that come with going from a situation of not having much hope with a bad prognosis — desperate, scared — and having that flipped completely around and being NED. It has been positively life changing and very emotional at the same time. I have a lot of survivor’s guilt, so I try to cope by providing help to others.”

Jason is very active in the cancer forum that led him to Fong. When doctors tell other eligible patients that surgery isn’t an option, Jason tells them his doctor said the same thing, but now he’s NED.

In the last five years, Fong has gotten a surge of patients who have been referred not by doctors, but by patients like Jason through online support groups like Colontown.

“Patients are getting together and talking about their experience, and educating each other, which is absolutely a wonderful thing,” Fong says.

Jason is part of the leadership cabinet of Colontown now, where he tells his story, steers patients toward funding resources and recommends seeking second opinions. The site describes itself as being composed of “secret” groups, but Jason says that is just a reflection of the value it places on medical privacy.

“(Colontown) is mainly ‘secret’ because of the privacy involved. We see people trying to scam cancer patients all the time. The specific support groups Colontown has within Facebook are set up to not be searchable and people apply online so we can vet them to make sure they are real and have colon cancer,” he says. “Many members don’t tell their family or work people on Facebook (that they have cancer) and want to remain private.”

“People find options they would never have gotten before just staying at their local hospitals,” he says. “These support groups hold a very special place in my heart because of the knowledge I’ve gained from them and I feel it helps me in my own healing by connecting others to resources which may change their prognosis.”

Jason credits the network of patients on Colontown for helping him survive to see big milestones — like his youngest son’s third birthday last week.

“It was very joyful,” Jason says. “At one point I wasn’t sure if I would see him born, and to see him turn 3 made me very happy.”