Hugo Chavez and rhabdomyosarcoma

By Joan Darling and Suzie Siegel

Venezuelan President Hugo Chavez may have been the most famous and most powerful person to ever have rhabdomyosarcoma.

If the disease was indeed rhabdomyosarcoma, it was very unfortunate that he chose not to make this fact public. Regardless of what one might think of his politics, Chavez was a prominent and influential figure, and his openness could have resulted in publicizing the plight of thousands of current and future rhabdomyosarcoma sufferers, especially older adults for whom there is practically no effective treatment.

Publicity brings awareness, and awareness brings demands for more and better treatments. By announcing the type of cancer he had, the family of Chavez, so proud of bringing political change to their own country, could have a positive impact on the lives of people throughout the world.

Before his death March 5, Chavez had undergone treatment for cancer in his pelvis for two years. He never specified what kind of cancer he had, but there was widespread speculation that he had soft-tissue sarcoma, specifically rhabdomyosarcoma, as journalist Dan Rather reported last year. After his death, Reuters and other news agencies said the sarcoma began in his psoas muscle.

Chavez and his vice president suggested his enemies might have injected him with cancer. But a healthy person's immune system would fight off such an injection.

Rhabdomyosarcoma is a rare cancer of the voluntary, or striated, muscles. About 350 children, adolescents and young adults are diagnosed with it each year in the United States, along with a small number of older adults.

Children and teenagers are treated extremely aggressively to beat what is an extremely aggressive cancer. They typically receive numerous rounds of multi-agent chemotherapy and radiation, as well as surgery, if feasible. Side effects of treatment can be debilitating and are often life-threatening.

If the cancer hasn't spread by the time they are diagnosed, young people have about a 70 percent chance of surviving. In contrast, older adults have less than a 5 percent survival rate.

Adults often have a different subtype of rhabdomyosarcoma that appears less responsive to treatment. Also, the oncologists who treat adults are not as familiar with this disease or the latest treatments as are the pediatric oncologists who treat children. Finally, just by being older, adults may not be able to withstand the rigors of the extended and intense treatment, which can take more than a year to complete.

Given political expediency, it is not surprising that a diagnosis of rhabdomyosarcoma would be hushed up, particularly as Chavez was up for re-election in 2012. It would have been very discouraging for his supportive constituency, and likely devastating to his political allies, to find out that he was facing an extremely bleak future.