Guest post from Dr. Shyamali Singhal, MD
Founder of Hope & Beauty
What Should We Know About The “Forgotten Cancer”
Why do we have a Sarcoma Awareness Month? Simply, sarcoma is still considered to be the “forgotten cancer.” Efforts to encourage research and drug development are made more challenging due to a lack of awareness and understanding. How can we as a community raise funds for vital research if people don’t know that this cancer exists?
Though the Sarcoma Foundation of America works tirelessly every day to raise awareness, during Sarcoma Awareness Month, we, at H&B aim to further highlight the extraordinary challenges that sarcoma patients face and the need for more sarcoma research and better sarcoma therapies.
Sarcomas are a rare group of cancers in which malignant cells form in the bones or soft tissues of the body.
Soft tissue sarcomas form in cartilage, fat, muscle, blood vessels, tendons, nerves, and around joints. Osteosarcomas develop in bone; liposarcomas form in fat; rhabdomyosarcomas form in muscle, and Ewing sarcomas form in bone and soft tissue.
How Frequent Is Bone And Joint Cancer In The U.S.?
Bone and joint cancer is most frequently diagnosed among teenagers, while soft tissue cancers typically affect those 55 years or older.
In 2020, more than 13,000 cases of soft tissue sarcoma and approximately 3,600 cases of bone sarcoma are expected to be diagnosed in the United States, according to data from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program (SEER). Some 5,350 and 1,720 people are expected to die from soft tissue and bone sarcomas, respectively. The five-year survival rate for soft tissue sarcomas is 64.7 percent, while the survival rate is 66.0 percent for bone sarcomas.
Sarcoma Risk Factors
It’s not yet known what exactly causes sarcoma, but there are some known risk factors:
Other people in your family have had sarcoma.
You have a bone disorder called Paget’s disease.
You have a genetic disorder such as neurofibromatosis, Gardner syndrome, retinoblastoma, or Li-Fraumeni syndrome.
You’ve been exposed to radiation, perhaps during treatment for an earlier cancer.
Having certain inherited disorders can increase the risk for soft tissue sarcomas, including retinoblastoma, tuberous sclerosis, Werner syndrome, and nevoid basal cell carcinoma syndrome.
Other risk factors for soft tissue sarcomas include past treatment with radiation therapy for certain cancers; exposure to certain chemicals, such as thorium dioxide, vinyl chloride, or arsenic; and long-term lymphedema in the arms or legs.
Past treatment with radiation can increase the risk of osteosarcoma and other types of bone cancers. Other risk factors for osteosarcoma include treatment with anticancer drugs called alkylating agents, having a certain change in the retinoblastoma gene, and having certain conditions, including Paget disease, Diamond-Blackfan anemia, and Werner syndrome.
Soft tissue sarcomas are hard to spot because they can grow anywhere in the human body. Most often, the first sign is a painless lump. As the lump gets bigger, it might press against nerves or muscles and cause discomfort or trouble breathing, or both. There are no tests that can find these tumors before they cause symptoms that patients notice.
Treatment For Sarcoma
The Sarcoma Foundation of America estimates that about 20 percent of sarcoma cases are curable by surgery, while another 30 percent may be effectively treated with surgery, chemotherapy, or radiation.
In general, treatment for sarcomas depends on the stage of cancer. The stage of the sarcoma is based on the size and grade of the tumor, and whether cancer has spread to the lymph nodes or other parts of the body.
Surgery is the most common treatment for sarcomas. If possible, the doctor may remove cancer and a safe margin of the healthy tissue around it. As much of the tumor is removed as possible, and radiation therapy and/or chemotherapy are given either before the surgery to shrink the tumor or after surgery to kill the remaining cancer cells.
Radiation therapy (treatment with high-dose x-rays) may be used either before surgery to shrink tumors or after surgery to kill any cancer cells that may have been left behind.
Chemotherapy (treatment with anticancer drugs) may be used with radiation therapy either before or after surgery to try to shrink the tumor or kill any remaining cancer cells. If cancer has spread to other areas of the body, chemotherapy may be used to shrink tumors and reduce the pain and discomfort they cause but is unlikely to eradicate the disease. The use of chemotherapy to prevent the spread of sarcomas has not been proven to be effective. Patients with sarcomas usually receive chemotherapy intravenously.
Sarcoma Awareness Month aims to further highlight the extraordinary challenges that sarcoma patients face, and provides information about the need for more sarcoma research and better sarcoma therapies.