The Wellness Community (TWC) is so neatly tucked away in a tidy little strip mall on Clark Road that most people only see it on their way into the adjacent Millie’s Restaurant. Those who do enter its doors have been sent there, usually by their doctors, and always after receiving the worst news of their lives. At least that’s how 58-year-old Bradenton resident Dick Metz found it.
Two years ago, the retired New York City police officer was diagnosed with bladder cancer. Surgery took care of that problem, but during a routine follow-up CT scan, a radiologist at Sarasota Memorial Hospital saw a suspicious lesion in his chest. Subsequent tests showed that he had stage 3 lung cancer, and two days before Christmas, Metz had surgery to remove his right lung. That was followed by chemotherapy. By then, Metz realized that he was going to need help, and he was going to have to look outside himself to get it.
"It’s a difficult thing for men-to show your emotions," he says. "But what you don’t need is sympathy. What you don’t need is to be treated like a leper." What he needed, he says, was support, and he found it at The Wellness Community.
The Wellness Community of Southwest Florida is part of the largest network in the country devoted solely to psychological and emotional support for cancer patients like Metz and their families. Harold Benjamin, a California physician, founded it in 1982 after his wife was stricken by breast cancer and they could not find adequate psychological services. Benjamin developed a "patient active" concept of cancer recovery that calls for a partnership between patients and doctors in treating the disease.
Part of TWC’s success can be attributed to interest in complementary and alternative medicine in cancer treatment. But it’s also because cancer treatment is changing, according to Sarasota’s TWC program director and psychologist Dr. John Kleinbaum. "There is more acceptance of the mind-body connection," he says. "There’s a lot more awareness of quality of life, as opposed to quantity of life."
The wellness center in Sarasota is one of 25 locations operating across the country. Since opening in 1996, more than 3,000 people have used its services; and every month, about 300 cancer patients make more than 800 visits to the facility.
This is astonishing when you consider that most wellness communities are located in highly populated metropolitan areas. (The only other location in Florida is Boca Raton, although Miami is currently developing one.) Sarasota has one only because of Cheri Krumholtz, a registered nurse specializing in cancer care, and members of the Sarasota/Manatee National Council of Jewish Women. Krumholtz and her group of volunteers faced an uphill battle convincing TWC’s founder that the area deserved its own center. They eventually swayed Benjamin with their argument that Southwest Florida has as many cancer patients as Boston-that and a promise to raise enough funds to run the operation for two years. In the end, 70 percent of the $290,000 needed to start up Sarasota’s facility came directly from individual donations.
"It took a leap of faith," says executive director Kevin Lindberg. "They had no program, no office, just a concept" of what they wanted to achieve. Today, TWC operates with five full-time staff, five part-timers and some 75 volunteers. It also has a 35-person professional advisory board that includes nearly all the local oncologists (as well as Cheri Krumholtz). "One of the first things they did when they were starting this program was to get the medical community to buy into it," says Lindberg. "Today they’re our biggest source of referrals."
Lindberg says the most important aspect of TWC is its ability to connect people with others who are going through the same experiences. Newcomers are encouraged to attend weekly meetings that are run by professionally trained cancer survivors who have been handpicked by Kleinbaum for their empathy and ability to communicate. More often than not, the receptionist is a cancer survivor. "A lot of people who come to us are in desperate situations," says Lindberg. "It’s really powerful for them to know someone else has been through it themselves."
That’s what drew Metz to the center, although he’s one of the relatively few men who use it. Most participants are between the ages of 40 and 70, and women outnumber men two-to-one. Kleinbaum theorizes that this is because "most of the cancers that affect women require more lengthy and drastic treatment, including chemotherapy." Plus, "Women are more sensitive to the need for support."
All services at TWC are free. Funded entirely by tax-deductible donations, the center offers workshops guided by experts in a variety of topics, from stress reduction to nutrition; lectures from cancer authorities and medical professionals; weekly meetings with licensed psychotherapists; and classes in guided visualization, relaxation, massage and yoga. The center’s "Buddy Book" matches people with similar cancers so they can offer support to each other outside the regular meetings. Its "caregivers group" helps spouses and family members, who can be under as much stress as cancer patients. Metz says it’s been an enormous help to his wife of 13 years, Cathy.
"The people that Kevin has are just superb," says Metz. "They’re really amazing." But he’s also been drained by the emotional impact of some of the relationships he’s formed there. "In the time I’ve been here, I’ve watched 15 people pass on. It’s hard."
It’s hard on the staff, too. Kleinbaum says that not everyone is equipped to deal with the pain involved in caring for cancer patients, especially when they become attached to someone who dies. He requires all staff members to attend weekly meetings to deal with their own feelings. Every employee and volunteer must also complete training to assess whether he or she will be up to the center’s unique challenges. That may be why the center has lost only one facilitator since it opened-and that was due to a relocation.
The Wellness Community offers programs in Venice, Bradenton and Newtown and is trying to expand into Englewood and North Port. In an effort to increase minority participation, they’ve started a support group for African-American men dealing with prostate cancer. TWC is also studying the feasibility of opening sites in Tampa and North Port. Metz remembers a woman who made the trip weekly from her home in Tampa. "She’s gone now, but it meant that much to her," he says.
It’s become more meaningful for Metz as well. Over the past few months, CT scans have detected four more tumors in his left lung. Doctors give him a 15 percent chance of surviving the critical five-year period. "I said that’s just fine, because I’m going to be in that 15 percent. I’m going to fight this thing, all the way." He continues, adamantly, "I’m not going to give up. I’m not going to lie down and die."
That level of optimism is what fuels The Wellness Community. It’s something that Kleinbaum says has gone far beyond his expectations. "I was doubtful that (TWC) would be useful for helping cancer patients and whether it would be able to sustain itself," he says. "I was wrong."
Footnote: We are sad to report that Dick Metz passed away March 10, after this article was published. We send our sincere condolences to his family.
The Wellness Community has a wide range of volunteer opportunities, from the receptionist’s desk to the library, fundraising events and board of directors. It’s not necessary to have a personal background in cancer. Says Dr. Kleinbaum, "You’ll learn all you need to know about cancer from the people you meet here." For more information about The Wellness Community, or to volunteer your services, contact Bets Burrell, outreach coordinator, at (941) 921-5539.
Testing for Cancer
While The Wellness Community fights cancer on the psychosocial front, medical professionals have been making these scientific breakthroughs:
Ovarian cancer. Ovarian cancer is the fourth most prevalent cancer among American women. It’s more common in women over 60 (but can strike much earlier in those with a family history of the disease), and researchers believe that women with two or more first-degree relatives (mother, sister, daughter) or second-degree relatives (grandmother, aunt) who have had ovarian cancer are 50 percent more likely to develop it.
Often, the symptoms-bloating, abdominal swelling, nausea, indigestion and low back pain-are too frequent and indicative of a thousand other ailments to alert patients to its existence. And because the tumors that ultimately distinguish its course often occur only in its latest stages, it kills more women than any other type of gynecological cancer.
Now, researchers at H.Lee Moffitt Cancer Center in Tampa think a blood test may detect ovarian cancer in its earliest stages when the chances for a cure are greatest.
These scientists have found that women with ovarian cancer have higher levels of a substance called lysophosphatidic acid (LPA) in their blood. They’re investigating whether a blood test to detect LPA can be more reliable in ovarian cancer screening than the current CA125 blood test.
Dr. James Fiorica, chief of gynecological oncology at Moffitt, says that as many as 50 to 60 percent of elevated CA125 test results are false positive for cancer (some studies put that figure as high as 90 percent). "That’s because many non-cancerous conditions cause elevation of the CA125 antigen," says Fiorica. He believes an LPA test would be a more predictable screening tool. Results of their 400-patient study should be ready by mid-2003.
Prostate cancer. According to the National Institutes of Health, prostate cancer is the most common cancer in American men. It occurs in 80 percent of men over the age of 65, and last year, nearly 32,000 men died from the disease. It’s especially devastating for African-American men, striking them 40 times more often than Caucasians and killing twice as many of them.
To understand how debilitating it can be, consider that although the prostate-a small, walnut-sized gland located deep in the pelvis-is not necessary for normal sexual or urinary tract function, surgery to treat prostate cancer can cause extensive nerve damage that increases incontinence and greatly diminishes sexual activities.
New surgical techniques are making progress toward eliminating some of those surgical side effects, but the greatest gains may be in genetic research that is occurring right now.
Scientists have known since 1992 that some forms of prostate cancer are inherited. Now, the National Institutes of Health reports that researchers have identified a specific gene-the ribonuclease L, or RNASEL-that contains mutations associated with prostate cancer in some families. (No small feat, considering the human genome contains 3.1 billion sub-units.) This is important because although only nine percent of prostate cancers are hereditary, they cause about 40 percent of the cases in men aged 55 or younger and are the hardest to treat.
Doctors involved with the research say that because all cancers are caused by genetic mutations that allow a cell to grow out of control and become a tumor, this discovery will create numerous research opportunities to study cancers of all types.
Detecting cancers of all types. A new blood test-the antimalignin antibody in serum (AMAS")-can detect the presence of cancer in the human body regardless of type or location, merely by measuring levels of antimalignin (AMA), an antibody that’s found in all humans, but is elevated in patients with malignant cancer.
Because it does not pinpoint specific cancers, the AMAS is currently being used when patients are symptomatic and after cancer surgery to monitor for recurrence. When used in conjunction with traditional screening methods like mammography, colonoscopy and Pap smears, it can tell with 97-percent accuracy whether or not a tumor is malignant before biopsy.
Two things make the AMAS an invaluable diagnostic tool for patients who are at high risk for genetic cancers, but are showing no physical symptoms. The first is its early detection rate-the AMAS has found cancers as early as 19 months before they could be seen in a clinical setting. The other is its virtually non-existent false positive rate.
Even more interesting is that the level of AMA in the body is directly related to the length of survival of cancer patients. Because production of the antibody is an immune response, the greater the antibody concentration, the longer the survival of the patient.
Work is now underway to produce an injectable vaccine that can raise AMA concentration and possibly prevent cancer occurrence.