• 2/27/2007
  • Norfolk, VA
  • Nancy Young
  • HamptonRoads.com

Freddie Cano had cancer. He doesn’t anymore.

In 1998, he noticed a lump on his neck. It turned out to be a tumor at the base of his tongue that wrapped all the way around his left carotid artery.

Surgery, chemotherapy, radiation and success followed. The cancer was killed.

But the treatment that vanquished the cancer also destroyed Cano’s salivary glands, so he constantly drinks water to keep his mouth from getting dry. It takes longer to eat, because of scar tissue in his throat that must periodically be thinned. For a time after the treatment, one foot “dropped” when he walked. “The chemo was short-circuiting the brain waves to my feet.”

The dream, Cano said, is “the treatments end and everything is fine again. It doesn’t happen.”

Like many cancer survivors, he’s not complaining about the side effects. The Norfolk resident is just happy about the main effect: He’s alive and making the most of it. He recently celebrated his 60th birthday by getting his first tattoo, a Navy anchor, on his left biceps.

But whether they complain or not, there’s growing concern that cancer survivors are not getting the care they need to live the fullest lives possible. In the past few years, national organizations including the Institute of Medicine and the Lance Armstrong Foundation have called for more systematic long-term follow-up for adult cancer survivors.

In the United States, men have a nearly 50-50 chance of developing cancer in their lifetimes, while for women it’s 1 in 3.

However, as preventive screenings catch the disease earlier and treatments have become more effective, a cancer diagnosis is no longer a likely death sentence.

The ranks of survivors have grown from about 3 million in the early 1970s to more than 10 million today. Last month, health officials announced the number of U.S. cancer deaths dropped in 2004, the most recent year for which statistics are available. That was the second straight year deaths declined, and it was hailed as the best sign yet that the tide has turned in the fight against the disease.

Having cancer can be a life-changing experience for the better, survivors say.

“Some people go a little bit crazy, the second chance of life,” Cano said. “I had a 30 percent chance to survive the next five years, and I’m eight years out.”

But survival comes at a cost. Surgery, powerful doses of chemotherapy and radiation can take a toll years or even decades later, resulting in problems such as secondary cancers, structural changes in the brain, infertility and diabetes.

“The cancer looks like it’s gone,” said Dr. Daniel Karak-la, a head and neck surgeon at Eastern Virginia Medical School who specializes in oncology. “That’s just the beginning of the story.”

And there’s more than just physiological side effects. Survivors also can experience long-lasting emotional problems and a perpetual sense of being lost. Where to find help is not as clear as it was during their active treatment – when there’s a systematic plan, protocols to follow and a team of medical professionals overseeing them.

“What I’m thinking now is we’re supposed to be doing the happy dance,” Carolyn Lawson of Morgans Corner, N.C., said at a support group at Chesapeake General Hospital earlier this month.

Lawson, 56, is nearing the end of her treatment for breast cancer. Her husband completed treatment for esophageal cancer last year. But the battles have left them scarred.

“Honey, even if you’re doing well, you can still feel sad,” Molly Feanny told Lawson. A 35 -year-old Chesapeake resident, Feanny has been fighting advanced non-Hodgkins lymphoma for four years. “There’s still a loss…. Life is never going to be the same after this.”

Cano, who is retired from the Navy, has found new life after the cancer by helping others. He volunteers with Lee’s Friends, a local group that helps cancer patients with many needs, including transportation to medical appointments. His connections have kept him up-to-date on treatments. For example, he’ll tell you there’s now medicine that can prevent the destruction of the salivary glands from radiation therapy.

“Every year they come up with more stuff,” Cano said. “It just keeps getting better and better.”

Cancer specialists are increasingly thinking about long-term side effects before treatment begins.

When patients in their 30s come in for the first time, “I think, ‘What can I do so that in their 70s they can have as good a life as possible?’ ” said Dr. Mark Sinesi, chairman of the Radiation Oncology and Biophysics Department at EVMS. “We need to be as hard as we can on the cancer but as easy as we can on the person.”

Sinesi said the evolution of cancer care has given doctors the ability to mix and match treatments for a “superadditive” effect – one that kills cancer but minimizes the long-term side effects.

Some cancer treatments have well-known negative effects. For example, in testicular cancer, the radiation will almost certainly permanently destroy sperm production.

“We talk about that on the first visit so that they can bank sperm” if patient s want to have children later in life, said Dr. Paul Conkling, a medical oncologist at Virginia Oncology Associates in Norfolk.

Just how treatments will play out is often far from clear, however. New therapies are constantly being developed, and even those in use for some time have effects that aren’t immediately evident. Tamoxifen, a drug that can be effective in preventing recurrences of breast cancer, carries with it an increased risk of uterine cancer.

“We weren’t aware of that until it had been around for 15 years,” Conkling said. “It took a long time just to have enough data.”

Keeping up is challenging enough for oncologists. It’s even more difficult for primary care doctors, generalists who typically inherit the treatment of cancer survivors.

The relationship with a family doctor is crucial, said Dr. Cynthia Romero, a primary care physician in Virginia Beach.

Romero said that after her patients go for cancer treatment, often they call to see what she thinks or to ask questions they didn’t think about asking their oncologists.

“It hits you two hours later when you’re home lying in bed. I t hits you a week later,” Romero said. “We let them talk, then give them the resources they need to go beyond that discussion.”

When the cancer treatment is done, Romero said, her approach is, “Let’s get you back on track and get your whole health back together.”

A team approach involving specialists such as nutritionists and social workers, in addition to oncologists and family physicians, is key, Karakla said.

How long should cancer survivors get follow-up care?

“Forever,” Sinesi said. He said he gives his patients his cell phone number so they can call anytime with questions.

Too often, though, cancer patients get lost.

Ray and Wilhelmina Pearson had beaten cancer once, when Ray had his prostate removed in 1994.

“The way it was presented, once they took it, you were done with it,” Wilhelmina said. The Virginia Beach couple, who retired from teaching last year, went about their lives.

In 2005, they discovered the cancer had returned and had spread throughout his body.

At the low point of his second bout with cancer, Ray told his wife of 43 years to “just let me go.”

Though his condition has improved, the experience taught the Pearsons the importance of being more active in their care and finding doctors with whom they communicate well.

After his prostate surgery, Ray said, he wasn’t vigilant enough about scheduling follow-up tests and didn’t keep track of what they showed.

Long-term survivors at the late-effects cancer clinic at Children’s Hospital of The King’s Daughters in Norfolk don’t have to worry about those details. They know exactly what treatments they had, in what doses, and what to watch out for over the long haul. On their annual visits, they’re given a treatment summary they can share with all their doctors.

Only a few places in the country do for adult survivors of cancer what CHKD does for survivors of childhood cancers.

But Dr. Rebecca Byrd, who directs the late-effects clinic, is scheduled in March to give a lecture to physicians at EVMS. In it, she hopes to plant the seeds that could lead to CHKD’s patients getting the kind of attention as adults that they become accustomed to as children.

In Congress, some lawmakers are thinking along the same lines. Earlier this month, U.S. Rep. Tom Davis, R-Va., co-sponsored bipartisan legislation that would require Medicare to pay for the development of treatment plans for cancer survivors.

Such a treatment summary was at the center of 19-year-old Joe Buterbaugh’s annual checkup at CHKD’s clinic in January.

Buterbaugh, of Elizabeth City, N.C., was 6 when he was diagnosed and successfully treated for a rare cancer, known as Ewing’s sarcoma, in his leg.

Buterbaugh’s mother, Jenny Buterbaugh, said she gets anxious before the checkups, dreading bad news. But without the clinic, “it would get hard because it’s like, ‘Where do we go now?’ We wouldn’t know what to do.”

The news wa s good for Joe Buterbaugh – no return of the cancer. He’s generally healthy, though he’s on medicine for his heart and kidneys, which were damaged during his cancer treatment.

“The ifosfamide is probably what you can thank for your kidney problems,” said nurse Ellen Vasser, referring to one of the chemo drugs that helped save Buterbaugh’s life.

Vasser, the nurse coordinator of the CHKD clinic, went over Buterbaugh ‘s treatment summary. The document will be especially helpful to him when he reaches age 21 and no longer qualifies for the CHKD program.

Buterbaugh noted that one leg is noticeably smaller than the other. “Is there anything that can be done about that?”

Vasser said his legs will probably never be equal – and that, because of the increased risk of fracture, he should avoid lifting heavy weights. B ut he could try strengthening his legs with elastic bands used in Pilates and other exercise classes, she said.

The clinic also focuses on the non medical aspects of being a cancer survivor. Karen McKinley, an oncology social worker, asked how Buterbaugh is doing in school. She warned that, as a long-term effect of his treatment, he might have trouble concentrating.

He looks so healthy that teachers may not think about the cancer. “They think about it when you’re bald,” because of losing hair during chemo, “but then they forget,” McKinley said.

Buterbaugh said he still feels “frustrated” mostly, and his little problems get amplified by the “big things.”

“You’re going to have bumps in the road because of the treatment,” McKinley said. “You want to work on them right away so they don’t become overwhelming.”

She asked Buterbaugh to give her three wishes. If he could have anything in the world, what would it be?

His first wish was to have never had cancer, to go back “to the past, maybe when I was 6 years old,” he said. “Yeah, that’d be one of them.”

The second wish came quickly: “And a cure for it.”

Buterbaugh was stumped on the third. McKinley gave him the option of telling her next year when they’ll do it all again.

“I’ll probably save the last wish,” he said.