Cancer survivors gather to share stories and hope

The second annual cancer survivors program, held Friday, October 2, at the Lee Pellon Center in Machias, was attended by over 70 people. The welcome was by Susan Rowan of the Maine Cancer Foundation, which promotes research and education with startup funding. Rowan joined the MCF, because she looked for "an organization dedicated to putting 100% to cancer patients. We provide starter funds." She added, "In the past year the foundation raised over $900,000 and gave it all away."

This annual event, titled "Cancer C There is Hope Here in Washington County," has been funded by the MCF, but in keeping with its policy of startup, the foundation will not sponsor the program next year. Program organizer Tami Dinsmore asserted, "We'll find a way to keep it going."

Included in Rowan's opening was an illustration of startup research sponsored by the foundation. Dr. Kevin Mills of the Jackson Lab in Bar Harbor spoke on "Walking a Dangerous Tightrope: DNA Damage, Chromosomes, and Cancer." Mills showed how his research, supported by two small grants from the foundation, led to a much larger grant from the National Institute of Health. One result of his work, Mills noted, was a geneticist's view of treatment: "We need to treat the patient and not the disease because cancer is a complex trait, and many genes interact to define individual cases."

Keynote speaker and cancer survivor Debbie Violette said, "They gave me two years to live. That was 12 years ago. It became my personal cause." Violette contacted the Lung Cancer Alliance in Washington, D.C., and became their chair in Maine. Her recent activities include research review for the alliance and patient advocacy for the Dana Farber clinic in Boston. In 2007 she planted memorial white tulips in Augusta, and she promotes candlelight vigils, including Shine A Light, which will take place Thursday, November 5, in Augusta.

"Can you get lung cancer from second-hand smoke?" a participant asked. Violette replied, "Sixty percent of new lung cancers are found in people who never smoked or who gave up smoking long ago." The work of her organization may be found at <www.freetobreathe.org>.

Counselor Mary T. White and her client Star Sweeney gave a joint presentation on the value of counseling for those with cancer. White began, "I'm a Downeaster, and we don't talk to people we don't know." Sweeney said, "I need counseling on how to live with people around me now that I am losing ground." Both talked about the difficulty of managing pre-mourners.

The panel of cancer survivors telling their stories made an impact. Bion McFadden spoke of the ups and downs of treatment for prostate cancer and the value of clinical trials. In the question session after the panel, McFadden said, "The reason I am alive today is because I have good insurance. I just hope this country can get something for everybody."

Lucille Larue had no family history of cancer and had mammograms every year since she was 30. Her breast cancer was detected early, but she detailed the struggle to get treated while working to maintain health insurance that covered no more than 80% of the costs. A new calendar year occurred during her treatment, and she had to start paying a new $3,500 deductible. Larue received an endowment from Eastern Maine Medical Services that paid her 2008 bills in full. She also joined the cancer support group at St. Aidan's in Machias. "It was good; I just belonged in that group." Larue smiled with pride and the audience laughed when she announced, "I just got my Medicare card."

The third panelist, Linda Milenkovic of Eastport, told her story of struggling with pancreatic cancer and how a clinical trial created a narrow window for surgery. She is the only survivor of 87 people in a nationwide trial group. Regarding support groups, Milenkovic said, "The minute somebody says cancer, you're part of this family."

An after-lunch panel of three health-care professionals spoke about local facilities and their future possibilities. Cheryl Zwingman-Bagley of the Calais Regional Hospital noted how they moved their Rose Room closer to the front door so patients do not have so far to go inside the hospital. According to Zwingman-Bagley the room "offers anything you can get as an outpatient." Future plans for the hospital include digital mammography, a palliative care team and telemedicine.

Lori Yenson, RN, of the Down East Community Hospital, spoke about "the bigger question of what we don't offer and why. An oncologist needs to be on staff and in 2010 actually in the room during treatment." She added that the American Medical Association is fighting this, and she said, "We've been working hard to change this because we think this is ridiculous."

Nadine Bullion of Eastern Maine Medical Services said, "How we can get the care as close as possible to the patient?" She showed photos of the new cancer center that will open in Brewer on December 14.

All three of the professional panelists spoke about the need for more physicians.

Thomas Key, director of Maine Telemedicine Services, gave a PowerPoint presentation on using technology "to provide a live clinical presentation." A questioner in the audience noted, "My oncologist insists they need a hands-on presence."

Key replied, "No matter how good the technology, you must have the cooperation of the professionals. The clinician drives the telemedicine team."

The day ended with door prizes and a candle-lighting ceremony "for those who have gone before."