Sarcoma Awareness Month is in July

Sarcoma Awareness Month: Shining Light on the ‘Forgotten Cancer’

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When you mention the word “cancer,” most people think of more common cancers like breast, lung and prostate cancer. However, July is designated as Sarcoma Awareness Month. It’s an opportunity to help raise awareness about a disease that’s often considered the “forgotten cancer.”

Sarcoma is a cancer of the body’s connective tissues. It begins in bone or soft tissues like fat, cartilage or muscle, and can affect both children and adults. Sarcoma Awareness Month raises awareness of a disease that’s relatively rare. This helps advocacy groups, who are often hindered by the fact that many people don’t even know this type of cancer exists. The public’s lack of awareness and understanding of sarcoma makes it much more challenging to secure funding for research and treatment development.

In this article, we’ll help you develop a better understanding of what sarcoma is, why we have Sarcoma Awareness Month, how you can help the cause, and how proton therapy can help treat sarcoma patients.

What is Sarcoma?

Sarcoma is a broad term for a cancer formed in connective tissues – the cells that hold the body together. It can begin in a variety of cell types, including bone, fat, muscle, cartilage, tendons, blood vessels or other supportive tissue.

Sarcomas are frequently found in a person’s arms or legs, since this is where most of our body’s connective tissue lives. However, since sarcomas can form anywhere in the body, there are hundreds of different subtypes of the disease.

These are broken up into two main categories:

As their name would suggest, soft tissue sarcomas start in soft tissues like muscle, fat, nerves and tendons. Specific types of soft tissue sarcoma include rhabdomyosarcoma, vascular tumors and Kaposi sarcoma.

Non-soft tissue sarcomas form in the bone. The most common bone cancer is osteosarcoma, which usually occurs in the large bones of the arm or leg. Other types include Ewing sarcoma, malignant fibrous histiocytoma and chondrosarcoma.

Signs of Sarcoma

Symptoms of sarcoma do not always appear in the early stages of the cancer. However, signs of soft tissue sarcoma can include a lump or swelling, often appearing as a painless lump under the skin of your arm or leg. As the sarcoma gets bigger, it may begin to press on nearby organs, nerves or muscles, which can result in pain or trouble breathing.

Pain is the most common symptom of bone cancer, but not all bone cancers cause pain. Other symptoms include a lump that may feel soft and warm, an unexplained fever, or a bone that breaks for seemingly no reason.

If your doctor suspects you may have sarcoma, they will most likely perform a physical examination or imaging tests (x-ray, CT scan, ultrasound, MRI or PET) to help diagnose it. They may also choose to perform a biopsy and/or blood tests to confirm the diagnosis and determine the severity of the cancer.

Sarcoma Treatment Options

Because there are so many different types and stages of sarcoma, there are many different treatment options. The type, size, location and stage of the cancer all factor into the treatment plan, as do the patient’s age and overall health.

Standard sarcoma treatment plans include surgery, chemotherapy, radiation therapy, cryosurgery, targeted therapy, or a combination of these. It’s important to be your own health advocate by understanding all of your treatment options, and the possible side effects of each.

Treating sarcoma with proton therapy

Since radiation therapy is often part of the treatment plan for sarcoma patients, it’s important to understand the different types of radiation, and the possible side effects of each. Proton therapy is an advanced form of radiation therapy that reduces your risk of treatment-related side effects compared to traditional x-ray radiation.

Traditional radiation therapy uses x-rays (or photons). Because of the physical nature of photons, much of the healthy tissue and nearby organs that surround the tumor are exposed to unnecessary radiation. On the other hand, proton therapy uses relatively heavy particles (protons) that can be precisely controlled to release most of their energy at the tumor site. This avoids unnecessary radiation to the surrounding heathy tissue and vital organs. As a result, the patient’s risk of short-term and long-term side effects is significantly reduced.

Why do we have Sarcoma Awareness Month?

Sarcoma is a very rare cancer in adults, accounting for just 1% of all adult cancers. While it is slightly more common for children (about 20% of pediatric cancers), there is still a relatively small number of people diagnosed with sarcoma each year, compared to some of the more prevalent cancers.

Because of its scarcity, sarcoma is often referred to as the “forgotten cancer.” This can make it difficult for advocacy groups to raise money for research and treatment development, since many people aren’t even aware of sarcoma’s existence.

Throughout the month of July, the sarcoma community bands together to help advocate for the needs of sarcoma patients, survivors and their families. Through social media, educational conferences and fundraisers, Sarcoma Awareness Month helps highlight the need for more research and better treatments.

How you can get involved in Sarcoma Awareness Month

There are plenty of ways you can help contribute to the cause. Sharing photos, videos and infographics on social media is a great start. The Sarcoma Foundation of America (SFA) has even created shareable graphics to help make it even easier for you.

You can also get involved by contacting your congressional leaders or local media. Tag them in your social posts using the hashtag #SarcomaAwareness.

The annual Race to Cure Sarcoma is a fundraiser spearheaded by the SFA. This year, the national race will be held virtually on July 25, 2020. There are also regional races scheduled in several cities across the country. Due to COVID-19 restrictions, the events happening during Sarcoma Awareness Month will be virtual races, but those scheduled for later in the year may still happen in person.

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As part of the Provision CARES Cancer Network, Provision CARES Proton Therapy has locations in Knoxville and Nashville, Tenn. If you or someone you know has cancer, we encourage you to call a Provision treatment center near you. One of our Cancer Care Experts can speak to you about your specific diagnosis and help determine if proton therapy is right for you.

 

 

What is a Sarcoma?

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Content provided by Rebecca Bergeron – Director, Clinical Services at Provision CARES Proton Therapy – Knoxville.

 

What are sarcomas and why should we be concerned about them?

A few years ago, my son asked me “how do you keep up with all the medical names in your job and what they mean?”  Well, in the medical field, and especially in oncology, we learn the origin and meaning of the different parts of diseases, drugs, and procedures to more easily identify and recall them.
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Sarcoma rare but responsive to proton therapy

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Sarcoma represents just 1 percent of cancer cases. Bob Sisson is among the 1 percent.

“There isn’t a buddy check for sarcoma,” he says. “I don’t know how you give yourself any self-exams. It’s just bad luck.”

A cancer of the body’s connective tissue, there are approximately 14,000 cases of sarcoma diagnosed each year in the United States and represent approximately 15 percent of cancer found in children, according to the Sarcoma Alliance. About 11,300 of those cases soft tissue sarcoma, which can be found in muscles, fat, blood vessels, tendons and other tissues. Just 2,890 cases are bone sarcomas. Sisson was diagnosed with a soft tissue sarcoma known as spindle cell last October.

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“I started feeling a lump on my left hip—the left hip started getting a little larger than the right hip,” he says. That was last summer. By fall, he started to feel pain in his hip bone, and he visited his primary care physician who ordered a CT scan. There was a large tumor that had already metastasized into Sisson’s lungs.

“Maybe if I’d gone in 3 months sooner…,” he wonders.

Because the tumor was so close to key organs including the bowel and kidneys, he was not a candidate for surgery. He started chemotherapy at the recommendation of his oncologist in hopes of shrinking the tumors. But Sisson had also noticed the Provision ads on television featuring ice skating champion Scott Hamilton. He did some research about proton therapy and made a “cold call” to the Knoxville treatment center.

“I thought the proton therapy sounded good for me,” he says. “I have a background in nuclear engineering, so I’m not unfamiliar with the (concept)…. I talked to my doctor, and he said he didn’t think it would be a bad route.”

Sisson and his wife spent three hours at the initial consultation, talking with Dr. Tamara Vern-Gross and her nurse Julie Goodfellow.

“They brought in a lot of their staff people to meet with us and talk with us,” he says. “It was so great to be able to have that interaction, that they would take the time to sit there and talk to you about this.”

Because protons deposit their energy at a specific target, there is less collateral damage to surrounding, healthy tissues and organs, making it a good treatment for many cancers, including sarcoma. Vern-Gross also advised on a shorter regimen of traditional radiation therapy, completed at Provision Radiation Therapy, for the smaller tumors in Sisson’s lungs.

The tumor on Sisson’s hip responded well to the treatment, drastically reducing the size of the sarcoma. He continues chemotherapy treatment for the lung nodules.

“The facility was just first-class. Just walking into the facility you think you’re in a clubhouse. It gives you a healthy perspective, a positive perspective,” Sisson says. “I would give (Provision) the highest marks on care. I would give it the highest marks on medical (expertise) because it’s state of the art. Dr. Tamara is great, absolutely fantastic. The world is a better place to have people like her.”

As for his cancer, Sisson says he has continued to stay active—caring for his wife who suffered from a stroke four years ago, driving himself to chemotherapy, keeping up the house and yard. While he knows the odds for beating stage 4 cancer aren’t in his favor, and although his Blue Cross Blue Shield insurance would not pay for the proton therapy treatments, he does not regret the investment.

“It resolved the issue that it was supposed to,” he says, referring to the tumor on his hip. “It’s your life you’re talking about.”

Proton therapy showcased on Ellen

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Julie Kramer, famous for her appearance on The Ellen DeGeneres Show last year after being diagnosed with stage 4 synovial sarcoma, returned to the show this week. There she announced she was cancer free following proton therapy treatment. Proton therapy is an ideal treatment option for sarcoma because, when using traditional radiation, the location of these cancers often results in undesirable side effects to important organs such as brain, heart and lungs. Provision Center for Proton Therapy offers proton therapy treatments for both adults and children.