Oral Cancer News

Source: www.womansday.com
Author: By Colleen Zenk Pinter, as told to Micki Siegel

The cameras were rolling and I was trying to say my lines, but I knew I sounded like I’d had a stroke. For the last 30 years I’ve been playing Barbara Ryan, a feisty woman who’s never at a loss for words, on As the World Turns. But now I couldn’t get the words out clearly.

Viewers started writing to the show and flooding fan websites, wondering why I sounded so awful. I knew I owed them an explanation, but I just wasn’t ready. I was still digesting the bad news.

On March 5, 2007–my daughter Georgia’s 14th birthday–I found out that I had oral cancer. Stage 2 squamous cell carcinoma, to be exact. I remember leaving the doctor’s office, picking up Georgia’s birthday cake, wrapping some presents and hosting a party as if nothing had happened. I was in shock.

I thought most people who got oral cancer were men who smoked and drank heavily, and I don’t fall into any of those categories. But I learned that I was probably among the fastest-growing group of oral cancer patients, because my illness was most likely caused by HPV-16, a strain of a common sexually transmitted virus that can also cause cervical cancer.

Scary Signs
It started in December 2005, when I noticed that my speech was changing. Suddenly my s’s had a bit of a whistle. My dentist said that because I was in my 50s, my teeth were shifting. Then, in July 2006, I developed a cold sore on my tongue. It went away and came back a few times, but by the end of the year it just stayed there, getting bigger and bigger.

I finally saw an oral surgeon in January 2007; by then, the sore was painful, raw and red, and ugly. The surgeon thought it was a combination of a fungal and a bacterial infection. He even said, “I’ve never seen a cancer that looked like that, so I’m sure that’s not what we’re dealing with.” That was the first time cancer even crossed my mind.

He prescribed a special mouthwash, which made it shrink for a little while. But after six weeks it stopped working. I went back to his office, and that’s when he found a tumor underneath the infection and biopsied it.

I had a follow-up appointment with the surgeon on a Monday. He told me it was cancer. I broke the news to my mother and my husband [actor Mark Pinter], who was in California working on a project. But I didn’t cry–there was no time for that. I went right to my computer to Google everything I could about my diagnosis. Meanwhile, I planned to see at least two specialists in the next few days.

Saving My Speech
My daughter, Kelsey, took me to the first doctor. He told me I needed a partial glossectomy (removal of part of the tongue), as well as a radical neck dissection: The doctor would start at my ear and cut all the way across my throat. He’d remove all the lymph nodes and surrounding tissues, and I’d probably be left with a huge pouch where a skinny neck should be. And a scar. As an actress, all I could think about was how terrible I would look.

When I got home that night, I had a message from my oral surgeon saying that he had been able to get me an appointment with another head and neck cancer specialist, Dr. Clarence Sasaki at Yale–New Haven Hospital.

Mark came home from California, my mom came in from Florida, and we went to Yale to meet Dr. Sasaki. He examined me, then asked me to wait down the hall while he presented my case to a group of doctors called the Tumor Board. Finally, Mark and I were ushered into a room with about 20 doctors. It was like walking into the audition of my life.

The board’s conclusion: Since the cancer was only in my tongue, I’d get a partial glossectomy with reconstruction so my speech would be affected as little as possible. Dr. Sasaki said they would take the right half of my tongue and all the muscle structure underneath. And then they would reconstruct my tongue by cut-ting a flap from the left side and bringing it around to replace the part of my tongue that had been removed. I was so relieved that I didn’t have to have my neck sliced open.

The operation went well, and first thing the following morning, Mark woke me and announced: “The eggs hatched!” (I have several birds as pets, and at that time one of them was a pregnant canary.) I ran down-stairs to the nest and saw this little thing with its mouth wide open. I stood there and watched as two other eggs were hatched. To me this was a sign of rebirth–a sign that I was going to be just fine.

Work Imitates Life
Unfortunately, my treatment wasn’t quite finished. When the pathology report came back, the board decided that I needed radiation. I had brachy-therapy, a process in which 20 minuscule radioactive rods were implanted in my tongue. Afterward, I was in unbelievable pain. Even worse, a few days later my tongue “rejected” many of the rods. That meant I would need another procedure to have them put back in.

I was despondent. I was already in so much pain. Before going back to the hospital, I spent a few days at the studio filming as many scenes as I could. My speech was a little slurred, but the show didn’t address it right then.

When I got to the operating room, I knew I was in trouble when the doctor said, “I am so sorry I have to do this to you.” They put me on a table and strapped me down, since they couldn’t give me any more anesthesia. This was my third major surgery in just six weeks. I’d given birth naturally three times–and this was the worst thing I’d ever felt in my life. Happily, though, this time the radiation rods stayed in place, and in October 2007 I was declared cancer-free.

I was anxious to get back to work, but I also had a new mission: to warn everyone about this disease. Since I’d been on As the World Turns for so long, the writers and producers agreed to “diagnose” my character with oral cancer in early 2008 and weave it in as a storyline.

Still Fighting
Although my doctors said I was healthy, I was always looking over my shoulder. Oral cancer has a very high recurrence rate, and within a year I fell into the unlucky group. The day after Thanksgiving 2008, I went back for further surgery to remove an enlarged lymph node along my jawline. I was scared to death. I ended up having a modified neck dissection–the doctors cut from just below my right ear to halfway across my neck (they stopped at the chin) and removed the lymph nodes.

The good news: 21 of the nodes tested negative. But one was so full of cancer it essentially exploded and was growing into the neck muscle wall. There’s no way of knowing where else the cancer cells might have landed, so I’m in for four and a half weeks of radiation. I haven’t started the radiation as I write this, but doctors tell me there will be severe side effects. I already have a pouchy neck and a 6-inch scar across it.

I don’t know what my future will be, but I hope to get healthy and go back to work soon. Despite the change in my appearance, I know I’ll always be welcome on As the World Turns–the cast is like my family.

The irony is that my cancer could have been found and treated so easily long before it progressed. My doctors say the tumor had been growing for two and a half to four years before we found it. I beg everyone who’s reading this, please, go to your dentist and ask for an oral cancer exam. It takes less than five minutes, and it could save your life.