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Sarcoma Awareness Month - Risks, Symptoms and History

Sarcoma patients

This date is an important reminder of the disease risk factors and the most common symptoms, so that we are able to recognize it as early as possible. It is also an important month to remind ourselves a little of the history of our fight against cancer. The battle against sarcoma, especially Kaposi's Sarcoma, embodies a truth that runs through all our battles against cancer: in the course of fighting it, we had to defeat our internal enemies first. 

What is a Sarcoma and what are known risk factors?

It is difficult to speak of sarcoma as a single entity, as the definition includes more than 70 different types of cancer. Sarcoma is the general term for a large group of cancers that arise in the bones or soft tissues (muscles, fat, blood vessels, nerves, tendons, and synovium).

This year, an estimated 17,100 people in the United States will be diagnosed with sarcoma. Although it is one of the rarest cancers in adults, less than 1% of the total, it is considered one of the deadliest rare cancers. Therefore, it is important to know the risk factors and symptoms because, as with any other cancer, the earlier it is diagnosed, the better the prognosis.

Here are some known risk factors that increase the likelihood of the disease:

  • If someone in your family has had sarcoma;

  • You have a disease called Paget's disease;

  • You have a genetic disorder such as neurofibromatosis, Gardner syndrome, retinoblastoma or Li-Fraumeni syndrome;

  • You have been exposed to radiation, perhaps during treatment for a previous cancer;

What are the common symptoms of Sarcoma?

There are some things you can keep an eye out for in terms of common symptoms. Soft tissue sarcomas are difficult to spot, they can grow anywhere in your body. Most of the time, the first sign is a painless lump. As the lump grows, it may press on nerves or muscles and cause discomfort and/or breathing difficulties. There are no tests that can detect these tumors before they cause symptoms that you notice.

Osteosarcoma may show obvious early symptoms, such as on-and-off pain in the affected bone that may worsen at night, stitching that often starts weeks after the pain, and a limp if the sarcoma is in your leg. Treatment is usually surgical, combined with chemotherapy and radiotherapy. However, recent research is getting closer and closer to new treatment methods. One of the greatest innovations of recent decades, immunotherapy to fight cancer, could soon be available for sarcomas.

The link between HIV and Kaposi’s Sarcoma

On July 3, 1981, a New York Times article was headlined, “Rare Cancer Seen in 41 Homosexuals”. In the early 1980s, the medical community, particularly in New York and Los Angeles, noted a sudden increase in the incidence of a very rare form of sarcoma called Kaposi’s Sarcoma. The rise of several cases of cancer among gay men led to increasing stigmatization, to the point that the disease came to be known as “gay cancer”. No one knew what was causing that sudden increase and the fact that it was contained in that particular population certainly delayed actual research. 

One thing that made it possible to overcome the stigma was that cancer at that time was seen as the nation’s number one health problem and funding for research was highly available. The fact that the sarcoma only occurred in one particular community, suggested that it might have an identifiable cause that, if uncovered, could potentially lead to a universal cancer cure. This outcome did not materialize. However, the cancer research, largely funded by the Cancer Research Institute (CRI), paved the way for us to understand what was truly causing the increased incidence: the soaring HIV epidemic. Without the cancer's importance at the time, scientists probably would not have recognized the cause of AIDS so quickly.

History books refer to Kaposi’s sarcoma as the disease that unveiled the HIV epidemic, which to this day has killed over 40 million people. This disease showed that we can sometimes be our own worst enemies.

Sarcoma is rare, but you can make a difference.

Last but not least, because sarcoma is a rare disease, the financial incentives for research and development of new treatments are low. But you can do your bit to change this reality. For example, by donating to institutions like the Sarcoma Foundation of America that support medical research to find a cure for sarcoma. By doing that, you can make the sarcoma awareness month a hopeful moment for those who are going through that difficult challenge. 

Written by Luis Guilherme


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