Cancer of unknown primary (CUP) survivor grateful for UT MD Anderson

When John Clark III was diagnosed with cancer of unknown primary (CUP) in April 2023, he was shocked and scared. CUP is a rare cancer that spreads from another part of the body, but the original cancer site is not known.

“It’s usually not good to have a rare cancer, but it worked out OK for me,” says John, who was diagnosed at age 65. “I was very blessed to get connected with some really good people at UT MD Anderson.”

Getting a second opinion at UT MD Anderson

CUP can be complex to diagnose and treat. The type of CUP John had was poorly differentiated carcinoma with squamous features involving one right inguinal lymph node. After getting his diagnosis, John had surgery close to home in Killeen, Texas, to remove the cancerous lymph node in his right groin.

Friends and family encouraged him to get a second opinion at UT MD Anderson. John’s from Houston originally, so he knew of UT MD Anderson’s reputation for cancer care. With a rare cancer like CUP, he knew he needed to seek treatment at a specialized center.

“I’d been assigned to a wonderful doctor in Killeen, but I was afraid to tell her I was going to get a second opinion somewhere else. I thought she might get mad, or it would hurt her feelings,” he recalls. “Instead, she told me that she expected me to get a second opinion. I learned then how important it was to educate yourself and be your own advocate.”

When he first got to UT MD Anderson, he had scans and bloodwork. A few days later, colon and rectal surgeon Craig Messick, M.D., performed an anoscopy to see if the primary tumor was anal squamous cell carcinoma. 

The results of the anoscopy were normal with no suspicious findings. He also underwent molecular profiling of the tumor and a blood test to detect microscopic cancer cells. John’s bloodwork and scans didn’t show any evidence of disease. He met with Kanwal Raghav, M.D., a gastrointestinal medical oncologist who specializes in treating CUP. Based on the results, Raghav recommended that John continue on close surveillance and come back to UT MD Anderson in three months.

“I told him, ‘That sounds good to me,’” says John. Then, he went home.

Treatment for cancer recurrence    

In December 2023, a follow-up PET scan at UT MD Anderson revealed that the cancer had come back. The scan lit up in a lymph node close to where the other cancer was found. His blood test was also positive.

“A guy told me long ago to listen to my gut because the gut never lies,” says John. “Somehow, my gut told me before that appointment that something was going to come up. So, I wasn’t surprised.”

Raghav recommended that John complete two rounds of chemotherapy – carboplatin and paclitaxel – to treat the recurrence. He would receive chemotherapy near his home under Raghav’s guidance.

“As I was talking to the chemo nurse back home, I was very upset, so she got a social work counselor to speak with me,” recalls John. “I told her that I believe in positivity and not manifesting negative things, but chemotherapy seemed like the beginning of the end.”

His side effects included fatigue and nausea, but he says his anti-nausea pills helped.

“I mostly just felt sick and tired for a few weeks,” he says.

John completed chemo on Feb. 6, 2024.

His first scans after chemo yielded some good news: he’d had a complete response to chemotherapy, and there was no evidence of cancer. His blood test was also negative.

“It was a major relief,” says John. “I’d been keeping a daily journal since I was diagnosed to sort through my thoughts. But after six months, I got tired of writing about cancer every day, so I stopped. But once I got that good news, I picked my journal back up and kept writing.”

Advice for others facing rare cancer diagnoses

John’s scans have remained clear, and he is on surveillance. He has follow-ups at UT MD Anderson every six months.

“A cancer diagnosis really makes you aware of your own mortality,” says John. “I’m grateful that my treatment was successful.”

He stresses the importance of connecting with other cancer patients who know what you’re going through. He was able to do that through a local support group. 

These days, John enjoys golfing and writing. He also hasn’t ruled out pole vaulting, a sport he competed in before his diagnosis.

“I encourage anyone facing a rare cancer diagnosis to do a lot of research and educate themself about the disease. This will help them make informed decisions,” he says.

He’s glad he chose to come to UT MD Anderson, where even the rarest of cancers are not rare to us.

“Back in the day, people used to think cancer was a death sentence,” he says. “But now there are so many treatment advances. You just have to have faith and believe that you’re going to be OK.”

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