Desmoid tumor survivor: Why I fly 3,000 miles to get quarterly check-ups at MD Anderson

When I was diagnosed with early-stage breast cancer about 12 years ago, I sought treatment for it in Anchorage, the biggest city near my home in rural Alaska.

But when I was diagnosed with desmoid tumors earlier this year — an aggressive type of growth that develops in the connective tissues — I went straight to MD Anderson.

Why? Because my local surgeon said that in his 17 years of practice, he’d never even seen one before. And if I went to MD Anderson, I’d be treated by doctors who’d seen dozens of them.

My desmoid tumor symptoms 

My first desmoid tumor symptom was an intense stomachache. It came and went weekly for a little over a month. The pain would start right above my belly button and would be so bad sometimes that my husband kept trying to convince me to go to the emergency room. 

We both lead busy lives, though. So, I’d stick to a liquid diet for a few days, and that always seemed to calm things down. When the pain returned for the fifth time one Friday night after my grandson’s hockey season wrapped up, I finally agreed to see a doctor.

My desmoid tumor diagnosis

The first two doctors I saw thought I was constipated. When I finally went to an emergency room, the doctors there did some scans. When they came back, they said I had a baseball-sized tumor in my abdomen. It was almost completely blocking my small intestine.

I was admitted to the hospital on the spot and had surgery to remove the tumor the next morning. Afterward, the surgeon told me he’d found and removed two smaller desmoid tumors, too, as well as parts of my colon, stomach and small intestines.

When I asked if he’d gotten all of the tumor tissue out, he said no, because mine had attached itself to the blood supply of my intestines. If he’d accidentally nicked that during the surgery while trying to get clear margins, I could’ve bled to death.

Fortunately, desmoid tumors don’t spread the same way a lot of cancers do. They don’t travel through the lymphatic system. Their tendrils just kind of reach out and grab whatever’s nearby. So, even though two of the adjacent lymph nodes my surgeon removed contained tumor tissue, it wasn’t necessarily cause for alarm. 

My desmoid tumor treatment

Still, I wanted to be certain there was nothing else I should be doing. So, we called MD Anderson. I grew up in Texas, and I knew about its reputation.

Once my incision healed, we flew down to Houston to meet with Dr. Shreyaskumar Patel, a sarcoma specialist. He confirmed my diagnosis of desmoid tumors, which are also known as aggressive fibromatosis. Then, he did another CT scan and blood test to make sure there weren’t any others that the surgeon had missed. 

He explained that normally, desmoid tumors are treated conservatively, with options ranging from careful surveillance to surgery or drug therapy. But since I’d had almost a total blockage, I likely would’ve needed surgery anyway.

He also said that while desmoid tumors can recur, it could be two years or 20 years before mine ever did. Either way, he wasn’t going to throw medicine at something that wasn’t there yet. So, he recommended watching and waiting for now.

Why I want the experts monitoring me

That plan sounded just fine to me because I wasn’t eager for any additional treatment. And, even though it’s more than 3,000 miles away, I’m happy to keep returning to MD Anderson every three months for my check-ups.

MD Anderson doctors have knowledge and skills that nobody else has. Dr. Patel has seen other desmoid tumors, so he knows how they behave. And, I only want the experts performing and reading my scans. So, I’m going to the best. 

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