The words no one wants to hear: Cancer on Nantucket
BY MARY LANCASTER
To many here, it seems as though word of someone being diagnosed with cancer is heard more and more often in recent years, leading to concern that the incidence of disease on the island is increasing.

Though statistics specific to Nantucket's cancer rate, new or otherwise, are difficult to find, island health experts who have worked in the community for decades say a surge in cancer cases is more of a perception than a reality for a number of reasons.

Those reasons include improved diagnostic techniques and greater patient access to screenings leading to early detection and treatment, the fact that cancers often do not manifest until after a certain time and islanders within an age span know of one another's circumstances, and that people with cancer now openly seek available support groups and do not keep their condition a dark secret as occurred in the past.

Since data on the county's cancer rates is obscure, and most of what is available is outdated and inconclusive, The Independent sought out Nantucket's health care veterans and the head of the town's Health Department to provide the most realistic and current profile of how our population fares with regard to environmental issues, known cancers and whether the incidence rate has changed.

"I think it's more apparent than real," Dr. Timothy Lepore, who has had a longstanding medical practice for decades and is the island's medical examiner, said of the perceived jump in the local cancer rate. "There are a lot of factors playing in - improved screening so things are picked up more often and sooner and access to screening. There may be increased incidences of skin cancer, but that may be because we're in an area of sun worship. Kids getting sunburns now may be diagnosed with skin cancer in 15 to 20 years."

Lepore named the most common cancers on Nantucket as including breast cancer, being found at earlier stages than in past years because of better and a more widespread testing, colon cancer, which is likely to be thwarted through colonoscopies identifying polyps that are removed before becoming cancerous, prostate cancer, found far more frequently when treatable than 20 years ago, lymphoma, ovarian cancer, which still lacks effective diagnostic measures and lung cancer, which he said has not increased substantially.

Russell Leshne, with the Yale Cancer center and Partnership Program Manager for the National Cancer Institute's Cancer Information Service, New England region, said statistics specific to Nantucket County are challenging to find. He did locate data showing that between 1999 and 2003, Nantucket had the highest mortality rate for lung cancer than any other county in the state.

That particular figure for both genders and all ages, based on a population of 100,000, translated to an average of six deaths annually during the period, a statistic that was categorized as stable from 1979 to 2003 but one Leshne feels could be important given the island's small population. That may mean more smoking cessation programs should be introduced to the community to bring the numbers down, he suggested.

According to a chart of observed and expected case counts for cancers in Nantucket from 1999 to 2003 found on the Massachusetts Cancer Registry Web site, the totals for the five-years were equal for men and women at 128 observed cases per gender encompassing all types of the disease. The highest incidence was for prostate cancer, detected in 56 men during this time frame. The next highest numbers came in for breast cancer in 46 females, followed by lung and bronchus cancers in 14 women and 13 men. There were 13 cases of colon/rectum cancer in women and detected in 12 males, followed by 12 cases of melanoma in females and 10 for men. Bladder and urinary cancers were found in 11 men and five women. All other cancers stood at four or fewer over the period.

Leshne noted that Nantucket appears to fare respectively well in terms of overall cancer mortality, with an average of 17 deaths from cancer during the study, including all races, ages and both genders.

"The incidence of breast, colon and prostate cancer goes up with age, and breast and colon cancer can be hereditary," Lepore explained. "Some of what we see is from better screening, some is statistical abberation and we need to look at our rates for an ageadjusted population."

Charlene Thurston, Nantucket's Hospice Director, concurs with Lepore that people of a certain age bracket are likely to be hearing about cancer cases or even being diagnosed with the disease, noting that Nantucket has a high rate of senior citizens. She also pointed out that as the island population grows the reports of can- cer cases grow, but that does not mean actual totals are disproportionate to the number of residents.

"As far as we can see, the overall rate is not going up," said Thurston. "Right now a lot of people are well-known in the community, so it seems it is popping up all over. Some have breast cancer but others have varied types, so it is not likely coming from environmental sources, and the Baby Boomers and younger people are more apt to talk about their cancers than in years past.

"I think that's a big factor," she continued. "It's a real generational thing and might give a perception that there is a lot more going on. Most of the time cancer develops over years. From my standpoint, I'm not seeing a lot more than in 1988, but I am seeing people being more open about it and seeking support services from us earlier than they used to. More people are realizing they can access Hospice for support early in the course of their illness even if the outcome is hopefully cure, whereas previously people only thought they could use Hospice if they were terminally ill."

Donnie Johnston did not seek out support groups, but is among those willing to publicly discuss his cancers. He was diagnosed with two different types within three years. At 59, he learned in 2003 through a routine exam that he had prostate cancer. Because it was detected early, surgery fixed the problem.

Then at 61, he was diagnosed with melanoma, the deadliest of skin cancers. His lesion was on his leg at the sock line but was removed at Massachusetts General Hospital before it spread. The worst part of the experience was Interferon injections, he said. The chemical, made from melanoma cells to boost the immune system, was given five days a week for four weeks at Cottage Hospital, then three times a week at home and did not bother him immensely until the drug was stopped. He became very sick for a month, lost more than 20 pounds and had little appetite for a year.

Johnston recalls being sunburned to "a crisp" on a few occasions as a child and how in the 50s and 60s no one seemed to use sunscreen. But though he has been hearing of local cancer cases more often, he does not view the news as alarming.

"I think when you get it, it opens you up to talking about it with other people," he said.

Two island women who have been through cancer treatments know of and recommend the Hospice programs. Lucille Jordan was surprised to learn last year that she was among a small population of people with tonsil cancer, with it being an even more unusual case since the majority of those stricken are men.

Jordan was 57 when diagnosed after she realized one of her neck lymph glands was swollen, even though the area was not sensitive. Though many "Boomers" had their tonsils removed in childhood, Jordan's were not and that option did not exist after diagnosis showed the cancer had metastasized to her lymph node.

"Tim Lepore was very helpful and made things happen very quickly," said Jordan, who underwent 36 radiation treatments five days a week for nearly eight weeks at Massachusetts General Hospital as well as five chemotherapy sessions. Now cancer free, Jordan is healing slowly from the intense program which caused her to require a feeding tube from the end of June through mid-December.

"Hospice has been extremely helpful," said Jordan. "People should be aware that they have assistance for people who are sick, and caregivers, too. They are fabulous. I think it's really important to have someone who has trodden the path to be supportive. It helps to lighten the fear. We are hearing more about [cancer] - people are more open about it and we are getting older."

Cindy Kosciuk, cancer-free for more than seven years, was 48 when she got the awful news that she had breast cancer. She had two surgeries, chemotherapy for nine months and radiation treatments in Boston that were arranged through a relative's references.

"It seems like every time you turn around it's someone else," she said of the presumption of increasing cancer on the island. "But people are more open about it. It was hidden years ago."

Kosciuk attended cancer support group meetings at Beth Israel Hospital but definitely suggests that community members who are diagnosed seek out the Hospice programs. "I think it's always good to know you are not alone and have an outlet," she said.

Data limited to breast cancer from an article in the International Journal of Health Geographics dated for the period between 1988 and 1997 but not published online until August 2004, spotlights Nantucket, part of the Vineyard and a portion of the Cape as being in one of the highest incidence rate areas of the state for that particular disease.

The study, identifying locations with invasive breast cancer either higher or lower than expected, included risk factors such as socioeconomic status or urban/rural status, and was also adjusted for age. At the conclusion of the study, it was recommended that the area including Nantucket should be investigated for factors outside those known that may be elevating the risk component for breast cancer.

More recent information not including Nantucket but providing numbers for the state and nation for 2006 comes from the National Cancer Institute, which creates this documentation on an annual basis. According to Marisa Connolly, Director of Communications for NCI, last year on a statewide basis there were 4,680 new breast cancer cases; 3,420 colon cancers; 4,070 lung cancer diagnoses; and 1,570 cases of melanoma.

Nationally, estimated new cancer cases for both genders totaled 1.4 million, with just over 700,000 being male patients. The breakdown was 212,920 breast cancer diagnoses; approximately 100,000 colon cancers; approximately 175,000 lung cancer cases; and 62,000 discoveries of melanoma. Connolly said since the American Cancer Society began recording statistics in 1952, the beginning of 2006 showed the first decline in cancer deaths based on the number of deaths provided by the National Center for Health Statistics.

The NCI information includes environmental factors that may be causing greater cancer risk in certain areas, but the island does not appear to be experiencing any such issues that could affect its cancer rate.

"If there were environmental problems identified by the state they would notify any department responsible for notification and eradication and require that we institute remediation efforts," said local Health Inspector Richard Ray.

"There has been no contact by any federal or state agency to this office regarding an increase in cancer rates," he went on. "A lot of people are out there with misinformation, and this office has never withheld any pertinent information. The state tracks cancer clusters [in areas] and if there is an increased number over time

they look into it. Nobody has contacted us." I