Marianne Moore, keynote speaker at the cancer conference "There is Hope in Washington County" held at the Lee Pellon Center in Machias on October 3, began with the negative: "The most dreaded sentence in the English language is, 'You have cancer.' Everything changes immediately." But the Calais city councillor and manager of Curves was there to state the concepts by which people survive cancer. "There is hope. It's all about attitude. I'm living with cancer, but I'm not making cancer my life."

Dr. Bill Horner summed things up on the physicians' panel later in the day. "We know cancer is higher in Maine than in the U.S., and Washington, Hancock and Penobscot are higher than Maine." The real shock came when he asked, "How many have cancers in more than one generation?" Of the over 100 people assembled, 47 of whom were cancer survivors, about 90% raised their hands. Organizer Tami Dinsmore said later, "I was sitting next to Dr. Abrams. We were horrified! Very few people in the room did not have their hands up."

It was that kind of experience that motivated this forum, suggested by the cancer survivors group that meets monthly in Lubec. According to Dinsmore, case management coordinator at the Regional Medical Center at Lubec, one person asked, "How come Augusta and other places have these and we don't?" Dinsmore said when she inquired, she was told, "They have one in Ellsworth." She said she replied, "I want one in Washington County." The Maine Cancer Foundation came up with the funding. The survivors group, along with Barbara Barnett, director of the Down East Hospice, and Michael Reisman, executive director of the Beth C. Wright Cancer Resource Center, put the forum together.

During the day, over 140 people visited the conference. The ratio of women to men was 38 to 7. Everyone who spoke that day had a story to tell about cancer, not the least of whom was lead-off speaker (via computer hookup), former Governor Angus King, who was operated on for malignant melanoma when he was 29 years old.

Beyond the stories, this was a day-long sharing of how to deal with the enemy, how to be a friend and caregiver, and what those who live in Washington County need to do to improve the lives of those who have cancer. The remoteness of the county and its poor and rural nature all combine in these days of huge insurance companies and major city medical supercenters to make treatment less accessible and less affordable. Increasingly, cancer survivors and their caregivers have come to depend on each other for seeing their way beyond initial diagnosis and medical treatment. As Heinz Milenkovic of Eastport put it about his wife's fight with pancreatic cancer, "Since her diagnosis, I've learned about extending my love and emotions beyond any point I could have imagined."

Services for standard treatments such as chemotherapy and radiation require county residents to travel to Bangor or beyond. As Marianne Moore noted, "We need more volunteer drivers to relieve family members. There are only two of us in Calais."

"They used to have more facilities here," said Anne Moody of Pembroke. "When I was being treated, you could get radiation here. They had more services here in 1991 than they have now."

The theme of the day was coping. As Angus King advised, "If you hear about somebody who has just got the diagnosis of cancer, call them up. I needed to hear that other people had been through what I was going through."

Fone Friends is an attempt to connect people in the cancer family, especially those who survived with those who are being treated. Access to this network is through Tami Dinsmore at the Lubec Regional Medical Center at 733-1090 extension 2214.

The second half of the morning program was a patient panel. The first speaker was Tina Bridgham, another organizer of the forum. Her story involved metastasized lung cancer. She had not smoked for 25 years and remarked, "Do not be lulled into believing just because you do not smoke this can't happen to you. Lung cancer is epidemic among young women who never smoked."

Linda Milenkovic, the second patient panel speaker, was diagnosed with pancreatic cancer on the eve of moving from Illinois to Maine. Her treatments at the Northwestern University Hospital required 10 months of chemotherapy and radiation, then surgery. She finally told them, "I'm going to Maine and I'm not taking my nurses with me and I'm not taking my doctors with me." But, she added, "It took two months to get arrangements in Calais to drain my chest."

Linda's husband Heinz filled the caregiver's slot on the patient panel. He began with what caregivers have in common. "Our partner, parent, child or friend comes home with a horrendous diagnosis. We didn't get a vote on this happening. This is a dangerous, life-threatening emergency! Most of us haven't ever been in this situation before. Never before, not this close, not this much in our face. We can't control what is happening, or where it leads to. And we can't change the outcome. That is our common thread."

Like Angus King, Heinz Milenkovic had a strong list of advice. These are some examples:

On first diagnosis organize a family function.

Be smart about treatment. Ask questions. Go on-line.

Befriend a member of the medical team.

Get a case manager at the insurance company.

Look for clinical trials. Anything in the protocol of a clinical trial approved by the National Institute of Health must be covered by your HMO or insurance company.

Be there for the milestones such as first radiation or chemotherapy.

Take care of yourself and don't apologize for it.

Following lunch, the physicians' panel presented. Dr. Robert Abrams of the Regional Medical Center at Lubec spoke on "The Role of Family Physicians in Treating Cancer Patients." After moving quickly through the list of pre- and post-specialized treatments, Dr. Abrams noted that primary care physicians "are the medical home. The health insurance we have now does not really pay for family care."

Earlier in the day, Angus King had been asked about the future of health care in Maine. He replied, "The same as in the country. It's a mess. We need a national solution. Cut the insurance companies out of the system. We need something like everybody covered by something like Medicare."

Dr. Karen Giordano, an oncologist at the Cancer Center of Maine, spoke about the challenges she faces, including the patient's fear and related communication problems. She said, "My biggest nemesis is time. A power above me dictates how much time I can spend: 60 minutes for a new patient, 20 minutes for a return." She suggested that patients write down questions beforehand and bring someone along. Although she noted "the Internet can be a two-edged sword," she recommended websites of the Sloan-Kettering Cancer Institute, the Mayo Clinic and the National Cancer Institute.

Dr. Giordano suggested, "Consider clinical trials. You will always get the standard treatment and hopefully something better."

The third physician to speak was Dr. Bill Horner, a retired surgeon, on the topic "What You as a Patient Might Expect of Your Doctor." Three years ago, Dr. Horner was diagnosed with prostate cancer. He said that patients should expect doctors to use plain language. The physicians should be truthful, but not harsh. He listed some reasonable time expectations for tests, for example, 24 to 48 hours for biopsy results. Patients should be accompanied by family members or significant others to be there for office visits and bring a notepad or, better yet, a tape recorder. He estimated that in the first visit "you probably won't retain more than 40 or 50 percent of what you hear."

After Dr. Horner's presentation, a question was raised about the distance Washington County residents need to travel. There was talk about television consulting, where "visits" could be held via video, and this may be coming soon.

Another questioner asked about the likelihood "of bringing an oncologist to the Machias area." Dr. Giordano said, "That won't be feasible in the near future. There are challenges getting people to come to Maine, and there is no state program to help." She recognized that Down East Community Hospital has been trying for some time to recruit an oncologist, but it is more likely one will be visiting monthly. Dr. Horner added, "Cancer is a complex system, and treatment is a complex system."

"I'll tell you what the basis of hope is for me," Dr. Horner said. "We're on the verge of one of the greatest periods of medicine in history. We're beginning to understand how genes communicate with cells. As time goes by, eventually researchers will come together and begin to understand how cancer cells communicate with each other." He cited a new building at Eastern Maine Medical Center in Bangor that will allow for an offshoot cancer research center in Brewer, with a third floor devoted to human genetics and health.

When the talking ended, there was a candle-lighting ceremony in memory of those gone on before. Each participant who wished to picked up a lighted candle and called a name or two. Then all stood quietly in a circle that nearly encompassed the room while Tina Bridgham's daughter, Sara Banks, sang "Go Light Your World." A number of door prizes were given out, and the event ended.

The next cancer support and resource meeting, will be on Friday, October 10, from 1 to 2:30 p.m. at the Regional Medical Center at Lubec. If you have had a cancer diagnosis or are currently providing help and emotional support for someone with a cancer diagnosis, you are invited to come to this meeting to get support and learn about cancer resources available in the community. Michael Reisman of the Beth C. Wright Center and Barbara Barnett from Down East Hospice volunteer services of Washington County will lead this meeting. Light refreshments will be provided. For more information, call Reisman at 664-0339 or Barnett at 726-5087.

On Friday, October 17, from 1 to 2:30 p.m., a cancer support and resource meeting will be held at St. Aidan's Episcopal Church, Machias.

The American Cancer Society's second annual Downeast Living with Cancer Conference, titled "Survivorship: Integrated Approaches to Hope and Healing," will take place at the Holiday Inn in Ellsworth on Friday, November 7, from 8 a.m. to 3:30 p.m. For more information on that conference, call 1-800-227-2345 or visit <www.cancer.org>.