Cancer of the unknown primary survivor: Why I joined a clinical trial at MD Anderson 

In March 2015, I was diagnosed with cancer of the unknown primary (CUP). That means the original cancer site could not be identified.

I still don’t know where my cancer originated. But when two years of radiation therapy and chemotherapy didn’t get rid of it, I knew I needed a new plan.

There is very little information online about cancer of the unknown primary, and my local doctors couldn’t find any new treatments to offer me. It wasn’t until I searched for the No. 1 cancer hospital that I discovered MD Anderson. Here, I finally found the clinical trial I’d been hoping for.

Seven years after my diagnosis, I show no evidence of disease.

My cancer of the unknown primary symptoms 

In the winter of my diagnosis, I was exercising a lot. One day, I stood up after a rowing machine session and realized my right butt cheek felt like it had fallen asleep. I thought maybe I’d been sitting crooked and tried to shake it off. The numbness went away, but my right leg looked much fatter than the left.

I joked around with my husband about it. But when my leg was still swollen the next morning, I went to our local health clinic. In rural Alaska, we only have a small medical facility. It doesn’t have an ultrasound technician. But that day, a visiting technician was examining a pregnant patient. So, she checked out my leg, too.

The scan showed enlarged lymph nodes in the crease of my thigh. The blood flow there appeared to be reduced, too. Blood clots were a strong possibility, so the technician advised me to go to Juneau for additional testing. I followed her advice, but my tissue samples got misplaced. By the time I repeated the tests a month later in Seattle, my lymph nodes had doubled in size. There was also a questionable area in my hip.

My initial treatment plan for cancer of the unknown

The Seattle biopsy results showed I had a type of cancer called undifferentiated squamous cell carcinoma.

Squamous cell carcinoma usually develops in the anus, esophagus, skin or reproductive organs. The human papillomavirus (HPV), which I’d had 25 years earlier, can also cause some of these cancers. Unfortunately, not enough tissue was left to determine the source of mine.

Because the cancer’s origins were still unclear, my local doctors were initially unsure about how to treat it. Eventually, a urologist, hematologist and gynecologist all weighed in: I’d have chemotherapy to shrink the lymph nodes and radiation therapy applied to my hip and torso. Doctors at a second hospital agreed with this treatment plan, so we moved forward. 

The treatment shrank my enlarged lymph nodes a little, but my right leg stayed swollen. I couldn’t ride a bike or drive a car for almost two years. Sometimes, I could barely walk. The doctor installed several stents to help with drainage and circulation. Eventually, the swelling started to go down, and I felt like things were looking up.

With the cancer shrinking, I was feeling pretty good, except for being a little hoarse. Then I went in for a scheduled scan, and learned that the cancer had spread to my chest. Nodules there were pressing on my vocal cords.

How I came to MD Anderson

I called my older sister to talk things over. She is a cancer counselor in the Chicago area and a four-time breast cancer survivor herself. She’d just attended a conference and asked one of the panelists what I should do. The panelist recommended seeking care outside of Washington State.

Until then, I’d thought it was a good thing that the two different hospital systems I’d sought opinions from were on the same page. The expert said that since my doctors knew each other, were about the same age and had gone to the same medical schools, they’d essentially been trained to think alike.

If I went somewhere else, she said, I’d have a fresh set of eyes assessing my case. I felt like my providers had done well by me, but I started looking around.

Why I joined a clinical trial at MD Anderson 

Due to my history of HPV, I met first with gynecologic cancer surgeon Dr. Anil Sood at MD Anderson. After reviewing my records and examining me, though, he didn’t think I belonged in his clinic. He encouraged me to see a colleague of his who might have a clinical trial available.

Less than an hour later, I was meeting with Dr. Aung Naing, who specializes in early-stage clinical trials. After that, all of the pieces fell into place.

An immunotherapy clinical trial for rare cancers 

Dr. Naing and his nurses explained how clinical trials work. They couldn’t guarantee a positive result, but they thought I’d be a really good candidate for a Phase II clinical trial for patients with rare cancers like mine. If I enrolled, I’d get an intravenous infusion of an immunotherapy drug called pembrolizumab every three weeks for two years. I’d also need scans every nine weeks, and I’d have to come back to Houston for every single infusion and scan.

The care team realized this was a big commitment since I live in Alaska. They said I could take some time to think about it, but I looked up and said, “No. I’m good. I’m ready to sign.”

I don’t think Dr. Naing or his nurses expected me to say “yes” that fast, but it felt right. It also didn’t hurt that at that same moment, my sister, husband and niece were all saying, “Sign it!” simultaneously. Tears sprang to my eyes. How much more support could I have asked for?

Why I still fly more than 3,000 miles twice a year for checkups 

Once I joined the clinical trial, I breathed a big sigh of relief. I also felt some apprehension. Had I finally found the people and place that could save me?

Today, I know the answer. I finished the two-year clinical trial on schedule, then had a few extra months of treatment, for good measure. I’ve shown no evidence of disease since 2019.

I only have a bit of neuropathy now in my feet from the chemo, some stiffness in my right leg likely due to scar tissue and a paralyzed vocal cord. Other than that, I don’t have any side effects. My life is pretty great. I can drive a car and ride a bike again, and I play pickleball three times a week.

I still return to MD Anderson every six months for checkups with Dr. Kanwal Raghav, a gastrointestinal oncologist who specializes in cancer of the unknown primary. I also get my routine mammograms, Pap tests, skin checks and colonoscopies there.

I know I could get all that done closer to home now, but Dr. Naing and MD Anderson saved my life. So, if anything unusual ever shows up again, I’ll feel better if they catch it. 

Request an appointment at MD Anderson online or by calling 1-877-632-6789.