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Sarcomas aren't diagnosed early enough

The Miami Herald

07-18-12

July 16--Ty Bassett wasn't too worried when, in 2005, he experienced pain and an unusual swelling in the bottom of his right foot. But when he stopped at a podiatry center on a whim, he was given worrisome orders: Get an MRI and rush yourself to a doctor.

Days later Bassett received startling news. He had synovial cell sarcoma, a very rare kind of cancer -- only 600 to 800 cases are diagnosed a year -- and his 2 1/2 -centimeter tumor had wrapped around all his ligaments. He eventually underwent chemotherapy, an amputation below the knee, followed by more chemo.

"I remember thinking, 'I can't die. I have a baby at home,' " he said.

Bassett, 46, of North Bay Village, didn't die, but staying cancer-free has been a struggle. Last year, during a routine follow-up, two tumors were discovered in his left lung. Once again he underwent chemotherapy and surgery to remove the tumors. A recent CAT scan revealed the tumors were gone and he remains optimistic that he has beat sarcoma.

"Until my diagnosis I had no idea what sarcoma was," he said. "Now I know it's called a bad-luck cancer."

There's a good reason for that moniker. Sarcoma, a cancer of the body's connective tissues, can be found anywhere in the body: on muscles, nerves, joints, bone, fat and blood vessels. The most frequent sarcoma sites are the limbs because they're home to most of our connective tissue. But because these tumors are often hidden deep in the body, an early diagnosis is difficult. What's more, sarcomas are sometimes dismissed as an innocuous lump or bump. As a result, the tumor is frequently large and has metastasized by the time it is discovered.

Sarcomas generally are soft tissue sarcomas or osteosarcomas, bone tumors. Sarcomas are rare -- 12,000 to 15,000 new cases are diagnosed each year -- and about 50,000 patients struggle with this cancer at any given time. Sarcomas are also deadly: About half are resistant to any form of treatment, though surgery combined with chemotherapy and/or radiation can result in a cure rate of 50 percent.

Sarcomas account for 15 percent of all cancers in children and young adults and about 1 percent in adults. But because there are 100 different subtypes, only a few hundred of each kind are diagnosed in any given year, making it difficult for the general medical community to properly diagnose.

That's why it's especially important for sarcoma patients to receive treatment in a specialized sarcoma center, says Dr. Jon Trent, director of the Sarcoma Medical Research Program at the Sylvester Cancer Comprehensive Center. The center, part of the University of Miami's Miller School of Medicine, is the only multidisciplinary treatment center for the disease in southeast Florida.

"A community pathologist may see one or two of these," he says, adding that doctors don't immediately suspect sarcoma either. Yet, "if treated properly, you have a good chance to save the patient."

Sarcoma patients also suffer another injustice: The cancer is often forgotten when funds are allocated. "There's not a ton of research being done because pharmaceutical companies want to invest where they will get more results," says Matt Alsante, executive director of the Sarcoma Foundation of America. "That and the fact that there are so many different subtypes makes sarcoma so much more challenging."

The causes of sarcoma are largely unknown, but there are some population groups who have unusually high rates of the cancer. Workers exposed to phenoxyacetic acid in herbicides and chlorophenols in wood preservatives have an increased risk. Others exposed to vinyl chloride, used to manufacture certain plastics, also have high incidence rates. Several disorders, including retinoblastoma and tuberous sclerosis, are considered risk factors, too, and patients who had radiation therapy as children or for certain types of cancer (retinoblastoma, breast cancer, lymphoma and cervical cancer) may also run a greater risk.

Sarcoma experts, however, are quite hopeful that research will deliver promising news in the future. A decade ago, for instance, patients with gastrointestinal stromal tumor (GIST) normally lived nine months. Today, with Gleevec, one of the drugs that treats sarcomas, they can live more than five years.

In fact, researchers believe that, because some sarcomas are caused by something as simple as a translocation in a cell's DNA, advances in sarcoma research might provide an opportunity for treatment developments in more genetically complex solid tumor cancers. Trent says he and his colleagues are using "smart bombs," targeted therapy that focuses on a biological feature of the tumor to eradicate it.

Joan Scheiner of Coral Gables was diagnosed with metastatic mioleiomy sarcoma 15 years ago. The original site of the cancer was the uterus but the cancer, 24 tumors in all, was found in her lungs during a routine X-ray before a scheduled knee operation. Chemotherapy and surgery followed.

Now "I'm on a short leash. Any bump or lump I have removed. I'm seen every six months because the threat of sarcoma is still there," she says.

Scheiner, 60, is chair of the board of governors of UM's Sylvester, her way of giving back for the life-saving treatment she received during her illness. She preaches the gospel of awareness whenever she can and mentors cancer patients and caregivers.

"Don't ignore your lumps and bumps," she says. "If you have anything suspicious, if your doctors says it's nothing but you have a sense that it might be, get yourself checked out at a comprehensive cancer center."

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(c)2012 The Miami Herald

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