FIGHTING CHANCE: Hope at a Day About Cancer Treatment

On one of the last temperate, sunny Saturdays of the year, some 300 people took time to sit in the darkened semi-circle of the Bay Street Theatre this week to participate in a program dedicated to cancer.

Although the event might sound depressing on its surface, it was a day devoted to hope. And about 200 of those people who either had survived cancer, were being treated for cancer, or were recently diagnosed, were offered a measure of help and encouragement in their struggles.

Fighting Chance, a nonprofit Sag Harbor organization that provides information and access to resources for East End cancer patients, organized the symposium with Southampton Hospital.

Duncan Darrow, the chairman of Fighting Chance, said he was gratified with the turnout and the assessment forms that 100 of the attendees filled out, which rated the day on content and worthiness on a sliding scale from one to five. "Almost everyone gave it a five, with only some fours, nothing lower," he said. "That's 100 people with cancer," he added.

"I feel as though we accurately perceived a community need and have done something useful to address it."

Mr. Darrow guessed that about 70 percent of the group were recently diagnosed with cancer, and the other 30 percent were survivors and caregivers.

Not only will Fighting Chance sponsor such conferences in the future, but it plans to make them longer and include more doctors as well as interns and residents. Mr. Darrow said that the interaction between doctors and patients in a nonclinical setting revealed a need for communication in a more open, relaxed forum.

A morning session was devoted to medical issues with Larry Norton, a renowned breast cancer oncologist, and Nasser Altorki, a professor of surgery specializing in the chest and heart and the removal of lung cancer. Both offered encouraging news about research and treatment.

Dr. Norton described how advances in treatment, many of them in recent years, have brought doctors closer to eradicating the disease. Dr. Altorki said that early detection techniques were allowing lung cancer patients a better chance at surgery and ultimate survival. Breast cancer and lung cancer are two of the most common cancers in the country and lung cancer is one of the deadliest.

After the doctors' presentations, a panel of local doctors, Louis Avvento, Renu Hausen, and Marilyn McLaughlin, joined them to answer the audience's questions about treatment advances, drug trials, the role of politics in getting money for research, the role of the environment as a cause of cancer, and how to deal with treatment complications.

Dr. Norton was frank in his assessment of the politics of cancer. "We have decided as a society that cancer is not something we want to stop," he said, comparing the $4.5 billion National Cancer Institute budget to the $12 billion he said the tobacco industry spends on advertising and to the amount of money spent annually on professional sports.

Dr. Norton discussed the reluctance of drug companies to pursue research on cures that would only affect tens of thousands of people because it is not financially feasible.

"There is a light at the end of the tunnel if as a society we decide we can, we will do it," Dr. Norton concluded.

Audience members were also curious about their legal rights and asked a number of questions of Susan Slavin, a lawyer whose practice is focused on advocacy for breast cancer patients.

Ms. Slavin said her early practice was devoted to righting the most egregious wrongs of worker discrimination and insurance denials. Today, most of those battles have been won. "It's a joy to be here in 2005," she said. There are other battles, but they are subtler and "not as disgusting."

Although there is no such thing as "cancer law," she told the audience that discrimination based on illness is the same as any other issue under the Americans With Disabilities Act. The workplace has to have more than 15 employees, however, to qualify. Under the act, any "reasonable accommodation" should be made for an ill employee.

Patients and their caregivers now have the benefit of the Family and Medical Leave Act of 1993 as well, which allows up to 12 weeks of unpaid leave.

Ms. Slavin said the Health Insurance Portability and Accountability Act also ensures "seamless" coverage without pre-existing condition exclusions. The patient must have maintained coverage without more than a 60-day gap, however, before joining the new policy. Employer insurance policies still have pre-existing exclusions, but they apply to those who were uninsured before qualifying for the company's coverage.

Providing an intimate look at the process of treatment and the issues involved were a group of five cancer survivors. Karrie Zampini Robinson, an oncological social worker who is the director of clinical programs at Fighting Chance and served as the conference's moderator, called the experience of cancer "a series of crises" from diagnosis to treatment. "No one can help you more than people who have been there," she observed.

Jeremy Samuelson, Jan Moran, Chuck Hitchcock, Harry Heller, and Susie Roden offered perspectives from the point of view of the young, old, afflicted, recovered, relapsed, and caregiver.

According to Mr. Darrow, out of 62 counties in New York State, Suffolk is ranked seventh in number of people diagnosed with cancer.

To address the growing need, Mr. Darrow said Fighting Chance will try to offer smaller workshops over the course of the year on specific cancers in addition to larger conferences. More information on the topics presented at the conference can be found at the Web site fightingchance.org. A copy of the free book "Coping with Cancer on the East End" can be ordered there.