Finding the Right Care After an Anal Cancer Diagnosis

On his 75th birthday, when most people would be celebrating, William Scimone received some of the worst news of his life: he had anal cancer.

It was a devastating blow, but having watched his mother battle lung cancer years earlier, Scimone knew three things: he needed the best care available, he needed the support of his family and that he couldn’t give up.

“I’m not the strongest person in the world,” said Scimone, now 77 and a semi-retired New Hampshire psychologist. “But I had a role model in my mother. If you don’t have something to hold on to, believe in, or value, it’s easy to slide into oblivion or worse.”

His mother, who died from the disease, continued to be a positive force in his life even as she fought for hers. It’s the same attitude he wanted to show his family.

“I feel you can beat these things if you keep your head down, move forward and have good people around you,” said Scimone, an avid slalom skier and stone sculptor.

Scimone sought care at Dana-Farber, where he was treated by Nadine Jackson, MD, MPH, a gastrointestinal medical oncologist who specializes in caring for older adults with gastrointestinal cancers.

Recognizing the symptoms

Jackson sees about 11 new cases of anal cancer every year. It’s a very rare cancer, but it is considered highly treatable. In fact, more than two-thirds of people diagnosed with the disease don’t require surgery.

Although anal cancer can happen to anyone, it is most commonly diagnosed in adults between the ages of 55 and 64.

Public awareness of anal cancer and HPV increased after actress Farrah Fawcett, of “Charlie’s Angels” fame, died of the disease in 2009 at age 62.

The majority of anal squamous cancers, the most common form of anal cancer, are caused by a human papillomavirus (HPV) infection. Symptoms can include bleeding, painful bowel movements, itching, and the presence of small lumps around or in the anus.

Scimone, who is married with two adult children and three grandchildren, with a fourth on the way, knew something was wrong when he began to experience bouts of intense pain and other gastrointestinal issues.

Finding the right care

He tried to make several appointments to see a specialist in New Hampshire, but was told by one that it could take months.

For  Scimone, waiting was not an option. His wife, Joan Tulk, who has a nursing degree and a master’s degree in public health, suggested Dana-Farber.

“It was very scary, but to be honest with you, having chased this problem, which was very painful for over a year, I had mixed feelings of fear and uncertainty that this wasn’t in my mind. The anxiety was unbelievable.”

His son, Mark, vividly recalls when the family found out about his father’s diagnosis. The family had gathered at Mark’s house for Scimone’s birthday celebration.

“His timing was interesting,” said Mark Scimone. “We had to pretend and pull ourselves together,” he said. “It was a strange dichotomy of celebrating his birthday and telling us he had cancer.”

“My dad is a very determined person,” he continued. “He’s kind of stubborn at times. Our instincts were to ask questions: how much he knew and what were the next steps?”

Scimone has always been in good health and exercised regularly. Radiation and chemotherapy took their toll. Scimone lost 35 pounds from his 5’8” frame, and at times he had to be hospitalized.

As a psychologist, Scimone recognized the benefit of managing stress levels decades ago. He asked his son’s former guitar teacher to make a CD of what Scimone calls “swoopie” music. It was a “perfect distraction.”

Looking ahead

Today, it’s two years post-treatment. Scimone’s daughter, Allison Keddie, a professional photographer and special education teacher, was pregnant with her second child when her father broke the news. It was hard, she said, to think he might not be around to welcome his newest grandchild, but her father always had a positive attitude.

“Your perspective is everything,” she remembers him teaching her and her brother, Mark. “If you can’t change your situation, you can try to look at it in a different way and find the positives. You can end up having a better outcome.”

Jackson said there is no radiological evidence of cancer based on lab results. “You’re cancer free,” he said. “That phrase is such a wonderful thing to hear.”

He still returns for follow-up visits, but he said everything looks good. He credits Dana-Farber and Jackson, along with the rest of his care team, for getting him this far.

“The positive attitude of the employees there is just so important as I went from one to another,” he recalled. “A positive face makes a world of difference.”

He is back in the gym, working to regain his strength. He’s back up to 150 pounds, still less than when he was first diagnosed. “It was pretty debilitating that first year,” said Scimone. “I was at home and not yet able to go water skiing.”

He also has other plans. He is writing a book with the working title of “Staying Focused for the Rest of Your Life,” and is continuing with what he calls his “Michelangelo project,” carving a life-size statue in marble of a mother gorilla with a baby on her lap, that he’s worked on and off for decades.

“I’m looking forward to getting back on the water this summer.”

He feels a lot stronger than he did last year.

“I’m convinced that I’ll be able to pop right out of the water like a cork,” he said. And when he does, his family will be there to celebrate.

Scimone probably won’t want to make a big deal of it, said Keddie.

But in many ways, it will be.

“After overcoming this obstacle, this will be a full circle,” she said.