When I was diagnosed with stage II cutaneous T-cell lymphoma in November 1998, I thought I was going to die. The reason? I did exactly the wrong thing and looked up my diagnosis online. One of the first articles I found there said that this type of non-Hodgkin lymphoma had an excellent survival rate: five years.
I still had a child in college at the time. So, I remember thinking, “Wait a minute. Just five years? That doesn’t sound very ‘excellent’ to me.”
Fortunately, I sought lymphoma treatment at MD Anderson. Its doctors reassured me that while my disease wasn’t curable, it was definitely treatable. Almost 30 years later, MD Anderson is still giving me peace of mind.
My cutaneous T-cell lymphoma diagnosis
At the time of my initial cancer diagnosis, I’d been getting treatment for years from a local dermatologist for chronic psoriasis. So, he’d already done many biopsies on me. But when an area of red skin also puffed up and started peeling, he performed another. That one showed a condition called mycosis fungoides, a type of skin cancer. I had a form called cutaneous T-cell lymphoma.
The dermatologist wasn’t certain about the results, though. He wanted to send me to MD Anderson. He knew they were the cancer experts because he’d completed a fellowship there. I got an appointment with lymphoma specialist Dr. Madeleine Duvic (now retired). She did her own tests to confirm it. But when she saw the affected skin, she said she knew immediately that it was cutaneous T-cell lymphoma.
My cutaneous T-cell lymphoma treatment
My care team explained that cutaneous T-cell lymphoma was an indolent, or very slow-growing, type of cancer, and that my symptoms would likely come and go. I might enjoy long periods without any at all, then suddenly have a flare-up. But they emphasized that the condition was controllable, and I could expect to live a very normal lifespan despite it. That was such a relief to hear.
Mostly, my treatment since then has consisted of various ointments. One was a topical chemotherapy agent called mechlorethamine, also known as “nitrogen mustard.” I also use three different steroid creams, and I get UV light treatments occasionally, too.
Today, I consider this cancer to be both a blessing and a curse. It’s a blessing because I can actually see it happening. But it’s a curse because I can feel it, too.
Most people with this disease just feel itchy. For me, it burns like somebody’s stubbing out a cigarette on my skin. Still, it’s been 27 years now since my initial diagnosis, and I only return to MD Anderson for checkups with dermatologist Dr. Auris Huen every two years. I feel like that’s a pretty small price to pay.
My pancreatic cyst diagnosis
MD Anderson brought me peace of mind again this year when I woke up one morning in August 2024 and started passing a lot of blood. I’d been experiencing other symptoms, too, such as constant indigestion and abdominal pain. I remember thinking, “This is not good.” My doctor told me to go to an urgent care facility for a CT scan.
The scan didn’t reveal any kidney stones, but it showed a bunch of cysts in my spleen. The attending physician seemed very concerned. He told me to follow up with my regular doctor ASAP and to get an MRI for a closer look. I followed his orders. But the MRI scan just showed a bunch of cysts in my spleen and my pancreas.
By then, I was really worried. I knew that people could live without a spleen, but I didn’t realize yet that pancreatic cancer could be survivable. If that’s what these cysts turned out to be, I feared I was in deep trouble.
Putting my mind at ease again
Once again, MD Anderson came to the rescue. I went to their website and found an article about pancreatic cysts featuring Dr. Michael Kim. I was so impressed that he was a specialist who worked in a clinic dedicated exclusively to pancreatic cysts. I remember thinking, “That’s where I need to go.” I made an appointment.
Dr. Kim turned out to be so nice. After completing his own assessment, he explained that my cysts were a type that has a very low probability of turning into cancer. They’d need to be watched, of course, in case they got larger or started blocking any ducts. But he believed that my most bothersome symptoms were due to other common GI conditions that could be treated with conventional therapies. It turned out he was right.
Upper and lower endoscopies revealed a lot of irritation in my GI tract. My local gastroenterologist diagnosed me with Barrett’s esophagus and irritable bowel syndrome. He also put me on an acid reducer and another drug called dicyclomine, which relaxes the smooth muscles of the GI tract and decreases spasming.
Today, I still have abdominal pains occasionally, but my quality of life is so much better. I have a lot of health stuff going on, but with MD Anderson watching out for me, I know that I don’t have to worry about it.
After my consultation with Dr. Kim, I feel like I have a future again. So, I’m just savoring retirement now and enjoying my great grandbabies.
Request an appointment at MD Anderson online or call 1-877-632-6789.