(BPT) – After a summer of healthy eating and exercise, Janice Nicewanner was on the road to better health when she noticed a small lump in her lower left abdomen. She assumed it was scar tissue from a past surgery, but decided to see her doctor six months later after it had grown to the size of a baseball. Shortly after undergoing surgery to remove what her doctors thought was a hernia, Janice found out she had cancer. Specifically, it was a malignant solitary fibrous tumor, a form of soft tissue sarcoma. Janice was 39 years old when she was diagnosed.
‘I had never heard of sarcoma before that day,’ said Janice. ‘The word ‘cancer’ never came up as a possibility in any of my initial conversations with my doctors until I received the diagnosis. I was completely blindsided.’
Sarcoma remains an unknown cancer to many. In fact, it is often known as ‘the forgotten cancer.’ However, July is unofficially recognized as Sarcoma Awareness Month by the thousands of patients and their families impacted by the disease.
What is sarcoma?
Soft tissue sarcoma (STS) is among the most distinct and complex types of cancer. It has more than 50 histologic subtypes that arise from connective tissues of the body, including muscle, tendons, fat, lymph vessels, blood vessels, nerves and tissue around joints. The tumors form most often in the arms, legs, chest or abdomen, though they can be found anywhere in the body.
Sarcoma is considered a rare disease; it comprises approximately 1 percent of all adult cancers diagnosed. An estimated 12,390 new cases of STS will be diagnosed in the U.S. in 2017, and nearly 5,000 people are expected to die of STS this year.
The challenge of diagnosis
Given the rarity and complexity of this cancer, diagnosis can be especially challenging. Sometimes a patient will need to visit several different doctors before the cancer is properly diagnosed. Patients are encouraged to see a sarcoma specialist at a sarcoma-specific treatment center to get care from a team of interdisciplinary specialists.
Based on where the cancer formed, different types of STS may be treated differently. Therapeutic advancements have been challenging, and the 5-year survival rates for STS have not changed much for many years. Treatments include traditional methods like surgery, radiation, chemotherapy and most recently, targeted therapy.
Due to her specific subtype of sarcoma, Janice’s doctors recommended radiation. After seven weeks of treatment and months of recovery, Janice has been in remission since May 2015.
Advocating for change
‘Because sarcoma is so rare and has many subtypes, there is a real gap in statistics and information. It is crucial to be your own medical advocate and seek the best care based on your needs,’ she explained.
Janice is now an advocate for sarcoma patients, survivors, caregivers and family members.
‘It is my mission to use my experience to educate others about sarcoma and help those impacted by the disease. My positivity carried me through my disease journey, and I am dedicated to helping others find that perspective as well.’
Raising awareness of sarcoma symptoms can help lead to earlier diagnosis and better treatment and support for sarcoma patients and their caregivers. A total of 100,000 signatures are needed to officially designate July as Sarcoma Awareness Month. To show your support for sarcoma patients and survivors like Janice, sign the petition by July 28, 2017.
To learn more about STS, and for resources on the disease, visit the Sarcoma Foundation of America (CureSarcoma.org).
* A few weeks before Dustins second birthday, he was diagnosed with a clear cell sarcoma in his kidney, a very rare childhood cancer. His parents were devastated. Today, Dustin is cancer-free. Real People. Real Stories. The Joe DiMaggio Childrens Hospital Experience.
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