"By Adele Slaughter, Spotlight Health, with medical adviser Stephen A. Shoop, M.D.
As a healthcare attorney, Ted Kennedy, Jr. is a passionate advocate for cancer patients and people with disabilities. Kennedy is particularly dedicated to this work because he knows the anguish of surviving cancer intimately — 30 years ago he lost his leg to a type of bone cancer called osteogenic sarcoma.
"I remember the emotional isolation I experienced, losing my hair, and dealing with that as a seventh grader," says Kennedy. "No one ever asked me how I was doing, or thought that my mental attitude would have an impact on how I approached the challenges I faced. Even though my parents found the best, most brilliant doctors that existed at the time to treat the cancer in my body, no one really ever addressed how I was doing emotionally."
With Kennedy's help, The Wellness Community (TWC) launched Virtual Wellness Community, sponsored by Amgen. VWC is a place on the internet where cancer patients can join professionally moderated support groups. Kennedy remains passionate about the message that no one has to face cancer and the process of recovery without emotional support.
"I didn't know any other kids that had this kind of cancer," says Kennedy, who serves on the board of TWC. "It was a rare type of bone cancer. What I found helpful at the time was my parents identified a ski camp for kids who had lost a leg. I wanted to learn how to ski on one ski. I said to myself 'If they can do it, I can do it too.' A lot of times it's not what people say, it is simply that they show up, sit in a seat, are a source of strength, and provide the power of example."
Recently, TWC celebrated 20 years of providing free emotional support, education, and hope for people with cancer and their families.
"We're having a luncheon to celebrate the 20th year of The Wellness Community," says Kennedy. "It's interesting because I am right across the street from where I was diagnosed with cancer and lost my leg in 1973 — just a stone's throw away."
"Osteogenic sarcoma or osteosarcoma, is the primary tumor of bone cells, it arises from the cells that form bone," explains Stuart E. Siegel, Director of the Children's Center for Cancer and Blood Diseases, Children's Hospital Los Angeles. "The other tumor that commonly occurs in children is Ewing's sarcoma. About 7% of childhood cancers are bone cancers. Of those, Ewing's comprises 2.3% while 4.6% is osteosarcoma."
Approximately 12,500 children from birth to 21 years-old are diagnosed with cancer in the US every year. About 600 youngsters will develop osteosarcoma.
"It can occur in any bone and most commonly occurs in long bones and is in the legs and arms, but any bone can develop the tumor," says Siegel, who is also a professor of pediatrics at the University of Southern California's Keck School of Medicine. "The usual symptoms that bring tumors to the attention of doctors are pain, a lump, or abnormality in the bone. Some patients actually present with a fracture and an x-ray is taken. Generally, the break is through the tumor which is discovered through the x-ray."
"I was 12 years old and noticed a pain in my leg and insisted that I have it looked at," says Kennedy. "The first doctor that I saw told me to soak my leg in Epsom salt and come back in a month."
"Obviously the pain didn't go away, and I came back and they did a quick biopsy and determined it was cancer," adds Kennedy. "I lost my leg the very next day and went through two years of chemotherapy."
Once diagnosed, the principles of treatment for children with bone cancer are similar.
"Today, treatment begins with chemotherapy since the cancer often gets into the muscles and the bone. We want to de-bulk the tumor before we take it out," says Siegel. "Once the tumor shrinks down in about two to three weeks we remove it. Then after about 12 weeks of chemotherapy we perform a 'limb salvage' procedure. We are able to remove the parts of the bone involved in the tumor and place advanced metal prostheses or cadaver bones to preserve the leg or the arm and its function. After surgery, additional chemotherapy is required for about nine to 18 months."
The vast majority of patients, about 80%, experience remission. Today, almost 70% of patients with osteosarcoma are long-term survivors and appear to be cured of the disease.
"There are 8.5 million cancer survivors in the US today," says Mitch Golant psychologist and vice-president of research and development of TWC. "With the new treatments available, there will be more and more survivors and the need for support will increase dramatically."
Addressing the growing population of people living with cancer as a chronic disease, TWC has 22 facilities in the United States and two Wellness Communities overseas. Last year they served over 25,000 people living with cancer.
"Because of my personal experience," says Kennedy. "I know that patients who are more involved and have their questions answered feel more positively about their course of treatment and are less likely to get stressed out or depressed. It is so important for patients to ask a lot of questions and educate themselves about the different treatment options."
"We were founded on the Patient Active concept," says Kim Thiboldeaux, president and CEO of TWC. "This concept says that patients who participate in their recovery and are empowered by working with their physician will improve the quality of their life. The data show that the three most common things people with cancer face are a loss of control, isolation, and a loss of hope. Our programs combat those things."
In a study conducted by TWC, University of California San Francisco, and Stanford, 65 women were recruited to look at the efficacy of online support groups. The women were suffering from breast cancer and two-thirds were from rural areas. These women showed a decrease in depression and anxiety, and an increase in their knowledge about the disease and zest for life. Using the results of that study, TCW launched an online community last February.
In addition to professionally moderated, online groups in a secure site, patients can download information about the following:
mind / body programs
educational and research information
With communities like TWC and advocates like Kennedy, there is critical support for those living with cancer.
"Cancer had an enormous impact on how I approach my everyday life," says Kennedy. "It sensitized me to a lot of issues for people facing cancer and not just the psychosocial issues but the legal issues as well. That is why I'm a health advocate. I also learned to pay attention to my body, not in a hypochondriac way, but to listen to what my body tells me. I think anyone who has faced a life-threatening disease really has a chance to reflect on his or her life. For me, I am incredibly grateful for everything today.""