Amazing Things: Sandy Kyrkostas
When this hockey dad was diagnosed at 47 with stage 4 colon cancer, doctors gave him little hope – until he met Dr. Manish Shah.
Sandy Kyrkostas isn’t the kind of guy who lets life’s little challenges get in his way.
So in late 2013, when he noticed he was having diarrhea, coughing a bit, and occasionally feeling dizzy, he went to the drugstore to get some meds. He also made an appointment to see his doctor in a few weeks and went on with his busy, bicoastal life as a film and TV producer and father of two avid hockey players, a son and daughter, then ages 12 and 11.
But he could no longer ignore his symptoms as he sat in an ice rink in Massachusetts that December, watching his son play in a tournament.
“I couldn’t stop shaking, even when I went back to the hotel and got under the covers. I thought I was getting the flu,” says Sandy, now 53.
He called his doctor, who advised him to go to a local emergency room. But Sandy preferred to be closer to home and that day headed back to Long Island. When he got to the local ER, an emergency colonoscopy revealed that he had two large tumors in his colon, which necessitated surgery to remove part of his colon.
“When I woke up, the only thing I wanted to know is if I’d need a colostomy bag,” Sandy recalls.
The doctors told him he didn’t — which was the last bit of good news he received for a long while. He had colon cancer, and it had metastasized, or spread, to his liver.
“They told me it was stage 4. I didn’t even know what that meant,” Sandy recalls. “When you hear the word cancer, you just think, ‘I’m dead.’”
A Dire Diagnosis
Sandy’s prognosis wasn’t promising. His first oncologist told him that the remaining cancer in his liver was inoperable and that, at best, chemotherapy might keep him alive for six months to a year.
Not willing to give up, Sandy and his wife, Michelle, saw an oncologist at another cancer center, where doctors told him to get his affairs in order.
“It’s hard to explain what it feels like to be told you’re dying,” Sandy says. “I felt numb. I felt hopeless.”
But in January 2014, a determined Sandy and Michelle made the journey to Manhattan to meet Dr. Manish Shah, chief of the solid tumor oncology service at NewYork-Presbyterian/Weill Cornell Medical Center and director of the gastrointestinal oncology program at Weill Cornell Medicine.
Suddenly, there was reason to have hope again.
At that very first meeting, Dr. Shah sprang into action, telling Sandy that he wanted him to get more scans and that he should get ready to have a port put in for chemotherapy, starting the following week.
“I told him I lived 50 miles away and asked if we could do everything that day,” Sandy recalls. “Dr. Shah started making phone calls and he got me in for a brain scan, a liver scan — he got me in everywhere. He stayed until 7 p.m. that night.”
It turns out Sandy’s desire to tackle his tests that day may have averted a tragedy.
While reviewing his scans that evening, Dr. Shah noticed blood clots next to Sandy’s portal vein and wrote a prescription for self-injecting blood thinners. On his ride home, Sandy received a call from Dr. Shah’s office, telling him to start the medication ASAP.
“They were on it,” says Sandy. “Dr. Shah was amazing from the very beginning.”
Getting a New Chance at Life
In addition to the blood clots, Sandy’s scans showed his colon cancer had spread to multiple parts of his liver. Dr. Shah’s approach was to treat the cancer aggressively, knowing that if the remaining disease was limited to Sandy’s liver, there was a chance to eradicate it. Dr. Shah’s next step was to take his case to the hospital’s tumor board, where doctors from a variety of disciplines meet weekly to review difficult cases.
“In tumor board meetings, we push each other to see what the best options are to help patients,” says Dr. Shah, who was determined to do everything he could to help Sandy.
Dr. Shah shared Sandy’s scan with the board, and together, the team decided to take a multipronged approach to try to eradicate Sandy’s cancer — starting with chemotherapy followed by directed treatment of the liver metastases, which would include surgery and interventional radiology.
“I told Sandy, ‘Before we talk about getting your affairs in order, let’s focus on the treatment,’” Dr. Shah recalls. “We work in an environment where people have the expertise to do liver resections, to give state-of-the-art chemotherapy, and to do really novel interventional radiology treatments. We use our entire arsenal against the cancer. My approach, and that of many of the doctors here, is that it’s hard to know what’s going to happen until you start the best treatment possible.”
“We are in this together,” Dr. Shah told Sandy.
Once Sandy heard the plan, his spirits were immediately lifted.
“Dr. Shah was the quarterback — he got the surgeons, he got the radiologists,” Sandy says. “At that moment, instead of feeling defeated, I felt hope.”
A Collaborative Approach
Sandy had 12 courses of chemotherapy — first in the hospital, then taking the rest of the infusion home in a fanny pack. And while he couldn’t yet go back to work, he was active as ever.
“Sometimes, my wife and I would cry at night, but during the day, I was still running around with the kids and picking them up at school. I wanted to make things normal for them,” he says. “I had my chemo bag, but we were moving and shaking and going to hockey games. People asked me what I was doing, and I told them, ‘I’m living.’”
“We tried to keep everything as normal as we could,” adds Sandy’s wife, Michelle. “I was hopeful but still nervous.”
Within the first few months of Sandy’s treatment, the chemotherapy shrank his tumors by one-third to one-half their original size. Importantly, cancer wasn’t found anywhere other than the liver, making treatment to Sandy’s liver a reasonable option.
Then, in April 2014, Sandy had his first surgery at NewYork-Presbyterian/Weill Cornell, a resection to remove part of his liver that had multiple tumors.
Since many of Sandy’s lesions couldn’t be safely removed — they were too close to a major vein — an interventional radiologist additionally performed microwave ablation, which used heat generated by microwave energy to destroy the remaining lesions in the liver. Dr. Shah then administered another course of chemotherapy, and by the end of 2014, Sandy was — for the foreseeable future — finished with treatment. Based on scans, he was rendered free of cancer, something he could not have imagined a year earlier.
“I had my chemo bag, but we were moving and shaking and going to hockey games. People asked me what I was doing, and I told them, ‘I’m living.'”
— Sandy Kyrkostas
But the cancer came back in the spring of the following year. Once again, Dr. Shah didn’t give up — and nor did Sandy and Michelle. Instead, Sandy went in for another ablation, and another when the lesions returned several months afterward.
Then, in 2016, when Sandy had yet another recurrence, Dr. Shah began working with Dr. Karim J. Halazun, a liver transplant and hepatobiliary surgeon with the Liver Transplantation and Hepatobiliary Surgery program at NewYork-Presbyterian/Weill Cornell Medical Center, who had recently joined the staff.
Colorectal cancer is the fourth most common cancer diagnosed among adults in the U.S., and “about half of patients with colon cancer end up having metastases to the liver,” Dr. Halazun says. “And though chemotherapy is getting better, surgery is the only curative option.”
“We push the limits and take on cases that others might not take on,” Dr. Halazun adds. “Sometimes their cancers are just simply not operable. But when we can, we try our best to remove them.”
Sandy’s case proved to be difficult. The doctors had told him that his surgery would take five or six hours. It ended up taking several more, in part because scar tissue from Sandy’s previous surgeries made it more complicated to lift out his liver.
“His liver was very, very stuck to his diaphragm,” says Dr. Halazun. “It took two to three hours to free it up.”
Once Dr. Halazun had isolated the liver and could see it clearly, he realized that the entire right lobe needed to be removed.
“He had four large tumors on that side, many around the major veins, and an additional tumor on the left side that also needed to be removed,” Dr. Halazun says. He ended up removing 60 percent of the organ.
“Depending on the patient, it’s possible to remove 65 to 70 percent of a person’s liver and still have it regenerate,” explains Dr. Halazun. “Within six weeks, in a normal liver, the volume of the remaining liver doubles.”
With the right lobe removed, another surgeon came in and reconstructed Sandy’s abdominal wall to repair a gigantic hernia.
“It was an amazing feat,” Dr. Shah says of the daylong surgery. “For many, a liver resection can be completed within a few hours. When Dr. Halazun operated on Sandy, it took him several hours just to get to the liver. Then, he performed intra-operative imaging to figure out how much disease remained. At that point, Dr. Halazun began operating on Sandy’s liver. Sandy has an incredible will to fight.”
Michelle grew anxious when the surgery took longer than expected, but “when they came out, the surgical team was really optimistic,” she says. “Just knowing that the cancer was out of his body made me feel good.”
Sandy spent 12 days recovering in the hospital. All told, he had undergone a dozen major procedures, surgeries, and ablations. Once he returned home he was so weak that he had to learn to walk again.
Getting Screened Early
For two years after his major surgery, Sandy lived in remission, tending to his new garden of beets, spinach, and kale that he juices, and traveling all over the country for his kids’ hockey games. “I really felt I had beat it,” he says.
But in October 2018, when blood appeared in his urine, tests showed that the colon cancer was back; this time, it had spread to his bladder. “I was in a dark place,” Sandy says. He then took on his new challenge with gusto. “I will get past this,” he said at the time. “Just add this to my résumé.”
Sandy underwent surgery again. Dr. Douglas Scherr, an attending urologist at NewYork-Presbyterian/Weill Cornell Medical Center and professor of urology and clinical director of urologic oncology at Weill Cornell Medicine, removed the tumor from Sandy’s bladder wall using a robotic procedure.
Since then, Sandy has been disease-free. “His risk of recurrence still remains high,” Dr. Shah says, “so we’ll continue to monitor him, but he’s doing quite well.”
These days, Sandy is happy to go in for his screenings, and he has become an advocate for people getting screened for colon cancer at age 45. The American Cancer Society last year lowered the age recommendation from 50 to 45 for people at average risk.
“People are scared of a colonoscopy, but I tell them it’s the best 30-minute sleep of my life,” he says with a laugh.
Colorectal cancer rates in young adults have been rising sharply, Dr. Shah explains. One recent study found that adults born in 1990 have double the risk of colon cancer and four times the risk of rectal cancer, compared to people born around 1950.
“If Sandy had gotten screened at 45, the cancer might have been found before it spread to his liver,” he says.
“I told Sandy, ‘Before we talk about getting your affairs in order, let’s focus on the treatment.’ We use our entire arsenal against the cancer.”
— Dr. Manish Shah
Living With Purpose
Sandy’s life, meanwhile, has taken on a greater purpose. “I want to talk to patients and give them hope,” he says.
Indeed, the day after his bladder surgery, Sandy sat propped up in his hospital bed, speaking on the phone with a man diagnosed with colon cancer. Since then, Sandy has spoken to dozens of colon cancer patients on the phone and in hospitals, many through an organization that connects patients with survivors, and he has launched a “Cancer with Sandy” Facebook support group.
“I’ve been living with this disease for five years,” Sandy says. “I’m probably going to live with it for the rest of my life, so it’s part of my life.” Yet he adds, “I feel like I’ve been going through this because this is my calling. I want to help people, I want to give them hope. If I can help one person, I feel like I’ve done a good job.”
“It feels so good to tell my story,” he adds, “because Dr. Shah gave me hope that day when he told me that surgery was possible.”
Sandy is grateful to be able to see his son and daughter being recruited to play hockey when they go off to college. “I wake up every day and thank God that I’m alive.”
And he is thankful to Drs. Shah, Halazun, and Scherr and the rest of his healthcare providers for not giving up on him.
The way the doctors cared for Sandy, he says, “I felt like they loved me.”
“The whole team was awesome,” he adds. “I was so lucky to have found them. These days, even when things are stressful, I don’t let it bother me. I have a beautiful wife and two healthy children … it seems impossible that I’m still living, but I feel like a damn lucky guy.”