Learning about Sarcomas
- Alison O’Neill was diagnosed with a rare and aggressive type of sarcoma called angiosarcoma after she noticed a small mark growing on her cheek for years. Now in remission after surgery and radiation, she wants her story to serve as a reminder for others to advocate for their health.
- The term sarcoma is used to describe an array of more than 70 rare cancers that begin in the bones and the soft tissues. This diverse group of diseases accounts for only about one percent of tumors in adults and just over 10 percent of tumors in children.
- Angiosarcoma is a rare cancer that develops in the inner lining of blood vessels and lymph vessels. It can occur anywhere in the body but is most often found in the skin, breast, liver and spleen.
- Tackling a rare disease can be difficult, so you might want to consider seeking more specialized care from academic centers and comprehensive care centers. Clinical trials can also be a good option for some people with rare diseases, but it’s important to remember that clinical trials aren’t for everybody and going into a study does not necessarily mean you’ll receive better care than the standard treatment.
O’Neil, who lives in Arizona, first noticed a change to her health when a small mark appeared on her cheek in 2017.Read More
Her dermatologist thought it was a clogged oil gland, but the spot only continued to grow over the years. She finally decided to have it removed in the spring of 2020.
“At that point, I was just thinking cosmetic. I just thought I’d like it removed because it was pretty prominent on my right cheek, but small,” she said. “Never in my wildest dreams did I think it was going to be anything dangerous.”
O’Neill had the spot removed for “cosmetic” reasons, but testing after the operation revealed the true nature of her mark: a type of cancer called angiosarcoma. Needless to say, O’Neill was in “absolute shock.”
“We’re walking through life, living your life, busy, and then you get a phone call that turns it upside down,” she said. “When I got that phone call, the first thought I had was I’m 47 years of age and I’m going to die.”
Angiosarcoma is a rare, fast-growing cancer, according to the National Cancer Institute. For every million people, one will be diagnosed with angiosarcoma per year in the United States.
Treatment for angiosarcoma tends to be aggressive given the nature of the disease. O’Neill’s course began with surgery to remove the rest of her tumor – a process that required a large area to be taken out from her cheek. Then, she underwent radiation followed by more surgery for facial reconstruction. This operation meant taking skin from others areas of her face and neck and lifting her face up with an incision that ran from underneath her eye to her collarbone. She needed 100 stitches in total. Doctors have also made use of lasers and broadband light therapy to restore O’Neill’s skin back to its natural color following reconstruction.
“The devastation and destruction that you see happening to your face is counterintuitive to everything we know about taking care of ourselves,” O’Neill said. “It’s hard to come to term with allowing that to happen.”
Now in remission, O’Neill is determined to share her story so that others will know when to advocate for their health.
“You have to advocate for yourself when going through any medical journey,” she said. “I describe the last two years as being like crawling through mud. It is incredibly difficult to regain your health and you have to work really, really hard at it.”
The term sarcoma is used to describe an array of more than 70 rare cancers that begin in the bones and the soft tissues, such as muscles. This diverse group of diseases accounts for only about one percent of tumors in adults and just over 10 percent of tumors in children.
The main symptom of sarcomas is generally a slow-growing, painless mass, but symptoms can be hard to detect as soft tissue sarcomas are typically painless and bone sarcomas can be mistakenly diagnosed as orthopedic injuries.
“Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancers,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, tells SurvivorNet. “A mass the size of a golf ball or larger and growing should be evaluated as a potential sarcoma. It’s important that patients who do have symptoms are not dismissive of them.”
Types of Sarcoma Cancers
The word sarcoma refers to a large array of bone and soft tissue cancers, and individual cancers within that set go by unique names. Some of the types of sarcomas include:
- Ewing’s sarcoma is a cancer that typically occurs in and around the bones, often in the arms or legs, or the bones of the pelvis. It most commonly occurs in children and young adults.
- Kaposi sarcoma is a very rare type of cancer that causes lesions on the skin, in lymph nodes, organs, and the mucous membranes of the mouth, nose, and throat. It typically affects people with compromised immune systems, such as those with HIV.
- Epithelioid sarcoma is a type of soft tissue cancer that grows slowly. It is likely to begin under the skin of areas like the finger, hand, forearm, lower part of the leg, or foot.
- Synovial sarcoma, also called malignant synovioma, is a cancer that can form in the soft tissues such as muscle or ligaments, commonly close to joints or in areas like the arm, leg, or foot.
- Osteogenic sarcoma, also called osteosarcoma, is the most common type of cancer that starts in the bones.
- Spindle cell sarcoma is very rare, comprising as little as 2 percent of all primary bone cancer cases. It can start in the bone, often in the arms, legs, and pelvis, and usually occurs in people over 40.
- Angiosarcoma is a rare cancer that develops in the inner lining of blood vessels and lymph vessels. It can occur anywhere in the body but is most often found in the skin, breast, liver and spleen. This was the type of cancer Alison O’Neill had.
Seeking Care for a Rare Disease
For some cancer warriors, community oncology provides great treatment options. But for people with rare cancers, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services—and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board—a group to go through all the details of your case… so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinical trials are also an option to consider when dealing with a rare disease. These research studies compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can play an important role for some patients’ treatment, but they also serve a larger purpose.
“Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said. “We need everyone to be partners with us if we’re ever going to truly cure cancer or prevent people from having to die from cancer.”
That being said, it’s important to remember that clinical trials aren’t for everybody. And going into a study does not necessarily mean you’ll receive better care than the standard treatment.
If you want to search for clinical trials on a user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
Contributing: Joe Kerwin