Help for sarcoma cancer is available locally and in state
Katherine Coleman Jones and Shannon Jones found each other through a Sarcoma Warriors Facebook group after Katherine posted a comment about how she was just diagnosed with sarcoma cancer and did not really understand how to think or feel.
She was angry and continually questioned why she had this disease. Shannon was the first to reach out to Katherine, and the two instantly became friends. They could talk for hours on the phone, and many times cried together.
“We were the same age – 29,” Katherine said. “We were both pharmacy technicians, and it was just nice to have someone my age who was going through the exact same thing.”
On July 3, Shannon passed away from sarcoma, leaving her husband and 8-year-old daughter Kayleigh.
At the end of July, Katherine and her family remembered and honored those battling sarcoma, including Shannon. A portion of proceeds from a trunk show that will be held on Tuesday at Vinya’s clothing store downtown will be donated and sent to Sarcoma Warriors, an organization created by Dr. Scott Porter, an orthopedic oncologist out of Greenville who specializes in cutting out sarcomas. He created the organization to help those going through this rare cancer afford all that goes along with it.
Half of all men and one-third of all women in the U.S. will develop cancer during their lifetimes, according to the American Cancer Society. However sarcoma cancer, a rare type of cancer found in 1 percent of all adult cancers and found in 15 percent of all childhood cancers, includes many different subtypes.
Subtypes may include masses in blood vessels, bones, joints, muscles and nerves. It affects any age, any race and any social economic status, according to Porter.
Sarcoma is a mass that hides within the body and generally only gets diagnosed when it becomes large and easy to see. The only way to be diagnosed with sarcoma is to get a surgical biopsy. While it can be cured by surgery, usually patients must seek chemotherapy and radiation treatment.
The cancer affects tissue in the body, which holds parts of the body together. It can be cancer of the fat and muscles, arteries and bones.
The treatment is strenuous and very intense. Due to the longevity of the treatment, many patients find themselves unable to pay the bills because they can’t always work.
Sarcoma is a family of about 50 different kinds of cancer, some of which are the most lethal to human, Porter said.
He began the organization after a patient from Greenwood passed away from sarcoma.
“He died without dignity because he could not afford to get back and forth to Greenville or Charleston for treatment,” Porter said. “I thought ‘never again,’ so Sarcoma Warriors was born.”
Sarcoma Warriors, divided into two parts, provides a virtual support group for patients, as well as financial help.
The support group includes a Facebook page, which Porter asks all patients to join, as a way to connect with others going through the same treatment and disease.
Financially, cancer becomes very expensive due to intense chemotherapy appointments and driving to cancer centers. As of the past two weeks, Sarcoma Warriors was able to pay off seven months of rent for patients.
According to Porter, the surgeries are radical and usually result too often into amputations or losses of major parts of one’s skeletal system. The group does not do research nor do they fund research.
In Greenville, Porter has a full team specializing in sarcoma, which, according to Porter, is very attractive to physicians in South Carolina who are trying to refer their patients to someone close by without having them to leave the state.
“We have been very blessed and have touched so many people,” Porter said. “It’s just a blessing I’ve had this opportunity.”
Although a trip to Greenville is only a few hours away, the Savannah River Cancer Foundation provides help closer to home in Aiken, Barnwell, Edgefield and Allendale counties.
“To see that you have a cancer diagnosis years ago was a death sentence,” said Jamie Turner, executive director of the foundation. “But the most important thing to do if someone is diagnosed with sarcoma – narrow down your sources because it can get overwhelming.”
People are bombarded with information when they are first diagnosed with cancer, according to Turner.
Turner has had two cancer scares herself and understands the importance of finding where to go for help and for hope.
One of the sites Turner recommends is CureSarcoma.org, which outlines resources and recommendations for those in all stages of cancer.
The foundation helps those with cancer financially with transportation costs or cancer medication coverage.
Many who suffer can’t afford cancer medication; many are barely able to make rent and grocery payments for life-saving medication, according to Turner.
“This disease decimates a family’s income,” Turner said. “We’re here because 10 years ago a volunteer was helping take someone to and from treatment, and she was in pain and couldn’t afford cancer medication. We were formed for that purpose.”
Although she does not see many cases of sarcoma through the foundation, Turner said, everyone needs to be educated.
“It is hard to break that once you hear, but that is why I advocate support groups. If nothing, just listen or talk about your experience because you don’t know who could benefit from what you say.”
Chaplain Cathy Cole, who runs a support group through Savannah River Cancer Foundation, said the group is there for whatever someone needs or wants to talk about – from treatment options to how he or she is coping.
“They basically share their story and ask questions from other members,” Cole said. “Some have different variety and stages of cancer, and some are family members of those with cancer. It’s driven by them and what they want to talk about.”
Cole is a 20-year cancer survivor.
“I have a heart for people who are fighting this battle,” Cole said. “I’ve also had family members fight it, so I try to support and help them get through it.”
For more information, visit SarcomaWarriors.org, CureSarcoma.org or SavannahRiverCancerFoundation.org.
Maayan Schechter is the city beat reporter and has been with the paper since July.
Trunk show information
The trunk show at Vinya’s on Laurens Street will be held July 30 from 1 to 7 p.m. Shoppers can purchase LissaMar women’s apparel and Senn Designs jewelry. A portion from all proceeds will go to help Sarcoma Warriors. T-shirts in yellow, the color of Sarcoma Month, reading, “Katherine’s Warriors: No one fights alone,” will be for sale for $10. Refreshments will be served.
Vinya’s is located at 118 Laurens St. S.W.