October 31, 2019
Josh Mullin expected to mark his 40th birthday with the typical trappings: a few friends, cake, a celebratory drink. Instead, he began his 41st year with the worst birthday present anyone can get: a cancer diagnosis.
Josh jokes about it now, cancer-free 2 years after his initial diagnosis of esophageal cancer, yet it was anything but funny at the time. “Turning 40 was a little rough for me,” says the Topeka resident with a chuckle. “It was just a tidal wave of information and activity my birthday week. First, there was shock. Then we put together a game plan.”
From dental checkup to esophageal cancer diagnosis
When asked about his cancer journey, Josh, who works as a golf course superintendent, pauses and then says, “Well, it really all started back in my early 20s.”
Josh first noticed small red spots on his lips. “To tell the truth, I was terrified to get them checked out,” he admits. “So, I ignored it, which you should never do.” However, a few years later, after getting married, Josh’s wife, Jamie, urged him to find out what caused the recurrent spots. Josh began with a dental checkup and asked the hygienist, a friend, what she thought. “She looked some things up and put the picture together and suggested it might be a condition called HHT,” he says.
HHT or hereditary hemorrhagic telangiectasia is a genetic disorder that affects blood vessels, causing them to develop abnormally. These small abnormal vessels can appear as red spots in and around the nose and mouth. The disorder also causes problems with the vessels that line the digestive tract, which sometimes result in stomach or intestinal bleeding.
Considering the possibility of HHT, Josh and Jamie began searching for more information. Josh saw a local dermatologist and had imaging exams, but the doctor did not make a definitive diagnosis, leaving Josh still seeking answers. “Jamie’s the one who said, ‘That’s not good enough – we need to go to The University of Kansas Health System,’” Josh recalls.
After receiving a referral from his primary care physician, Josh saw Anand Rajpara, MD, a dermatologist at The University of Kansas Health System, for further evaluation. Dr. Rajpara also suspected that HHT was possible, and because of the potential effects on the digestive tract, he referred Josh for a gastroenterology evaluation.
Josh subsequently had an upper gastrointestinal endoscopy. Using a thin tube with a light and camera on the end, known as an endoscope, physicians examined Josh’s esophagus, stomach and a portion of his small intestine.
The scope revealed a small mass at the lower end of Josh’s esophagus. “They took a biopsy of the tissue. We hoped it would only be superficial, and they could just remove it, but 2 weeks later, as I was turning 40, I found out it was cancer,” he recalls.
The team takes charge
Esophageal adenocarcinoma is the most common form of esophageal cancer and affects more men than women. Josh had stage IIB, meaning at least 1 lymph node appeared enlarged, but the cancer had not invaded nearby structures, like the stomach.
To develop a treatment plan, a collaborative, multidisciplinary group of physicians, known as a “tumor board,” discussed Josh’s case at The University of Kansas Cancer Center. Working together, tumor board members consider the best, research-based options for treatment, including clinical trials when appropriate.
Anup Kasi, MD, MPH, a medical oncologist who specializes in treating gastrointestinal tumors at the cancer center, explained the plan to Josh. “We reviewed all the studies, scans and pathology and determined that the best course for Josh would involve chemotherapy and radiation followed by surgery,” he says. For 5 weeks Josh had a combination of weekly chemotherapy and daily radiation treatments.
“He tolerated the treatment very well,” Dr. Kasi says. “Josh was still fairly young with no other major organ dysfunctions. He also was very motivated to fight his battle and complete his treatment successfully.”
Whether his youth, his good health, his attitude or a combination of factors are responsible, Josh achieved the best possible outcome: The initial treatments destroyed the cancer, and PET scans found no evidence of active malignancy. “Dr. Kasi is an absolute genius,” Josh enthuses. “During treatment, I felt fatigued but never really sick.” But as Josh soon discovered, that was the easy part.
Creating a new esophagus
With the chemotherapy and radiation complete, Josh faced an even more daunting treatment: surgery. On September 18, 2017, Alykhan Nagji, MD, a cardiothoracic surgeon who specializes in lung cancer, esophageal cancer and other chest malignancies, performed an Ivor Lewis esophagectomy on Josh. This was 2 months after his final chemotherapy treatment.
Surgery involved both an abdominal incision and a chest incision. During the procedure, the stomach is mobilized in the abdomen, while inside the patient's chest cavity the cancerous portion of the esophagus is resected and the stomach is made into a tube. The stomach is then connected to the esophagus. The result is the creation of a neo-esophagus using the stomach as the conduit. The procedure takes about 5 hours to complete.
“I won’t lie; it was scary,” Josh says of the surgery. “That was the time to put my game face on, but I knew I was in good hands and had the very best care. Dr. Nagji is the best – as a surgeon and as a doctor you can talk to.”
Without a complete esophagus and with his new, elongated stomach, Josh only eats about a cup of food at a time. Before the surgery even occurred, Josh talked with dietitians at the cancer center to understand and prepare for his new eating regimen. “I need to make sure I get all my nutrients by eating several small meals each day,” he says. “I’m still adjusting to that.”
However, the adjustment is a small price to pay. Pathology results from Josh’s surgery showed a complete response, meaning there were no cancer cells in evidence. Only about 20% of patients with this type of cancer have a complete response like Josh, and he knows how fortunate he is. “I’m truly a blessed man,” he says.
“Patients who have a complete response are long-term survivors,” Dr. Kasi says. He continues to examine Josh as part of an ongoing surveillance program that ensures any recurrence is identified quickly and addressed. Yet things are looking good for Josh – he remains cancer-free, and his case may help treat others.
Contributing to future treatments
Genetic testing confirmed that Josh has the gene mutation associated with HHT. Could this be responsible for his cancer? It’s hard to say. “Patients who have HHT are at increased risk for some cancers, but we really need more studies on this,” Dr. Kasi says. “Certainly, it could have had a role in Josh’s cancer. It also could have had a role in how well he responded to treatment.”
As a physician at an academic medical center, Dr. Kasi is submitting a paper about Josh’s case to a scientific journal for publication. “We want to add knowledge to the medical community and contribute to the scientific field,” he says. Josh also is contributing to the study by writing up his own patient experience as a supporting document.
Both Josh and his medical team are adamant that early diagnosis is key to the best possible outcome. Individuals with ongoing reflux, difficulty swallowing, unexplained weight loss or sudden loss of appetite should get checked out.
“I wasn’t ever big on going to the doctor, but it was the most important thing I ever did,” Josh says. “I feel good now. I’m back to work, and life is getting back to normal. The cancer center is just a very special place.”