According to the National Foundation for Cancer Research, because of its rarity, sarcoma has been deemed the “forgotten cancer”.
“Sarcomas are rare in adults and make up approximately 1% of all adult cancer diagnoses. They are relatively more common among children. Between 1,500 and 1,700 children are diagnosed with a bone or soft tissue sarcoma in the U.S. each year. This makes up about 15% of cancers in children under the age of 20.”
Because of its rarity, the fact that it can develop almost anywhere in the body, and due to its difficulty to diagnose, it’s recommended that if you are diagnosed with sarcoma, you seek a second opinion.
Sarcoma Facts, Signs & Symptoms
If you have any of the symptoms listed above and are concerned, book an appointment to speak with your physician as soon as possible.
Stories from Sarcoma Patients
Many sarcoma patients and survivors have shared their stories in order to spread awareness of this type of cancer, the symptoms that led to their diagnosis, their treatment experience, and life post-cancer. Here are some of those stories. These stories can also help those diagnosed with sarcoma.
An Unexpected Life After Cancer & Tools To Help Manage It
Cancer is a whirlwind.
In one day, I went from being a healthy 27-year-old woman, to a rare sarcoma patient in need of aggressive chemotherapy. My life went from a place of normalcy to a chaotic rush of doctor’s appointments, chemo treatments, and unrelenting nausea. Through my disorientation, I had one singular focus: survive. Daily, I would countdown my treatments as I looked toward “normalcy”. “Just 17 more treatments, until I can go back to normal”. It was a rude awakening to reach the end of chemo and realize my “normal” no longer existed.
Overcoming the Unexpected: Sarcoma Survivor Tells His Story
Carl Granum was a college athlete in Iowa when he was diagnosed with a desmoplastic small round cell tumor, a type of sarcoma that typically begins in the abdomen or pelvis. In general, sarcomas are cancers in bones, muscles, and connective tissue throughout the body. Here, he tells the story of his diagnosis and treatment.
In 2014, Ryan Kennington was like any other high school senior with a passion for soccer — active and full of life. Like most kids his age, he was preparing for graduation and the excitement of heading off to college.
A few months before Ryan’s 18th birthday, he started to feel pain in his right hip while playing soccer with his family. Having had a prior injury to the hip, he started physical therapy to relieve the pain. Despite this, the pain worsened. Eventually, Ryan was unable to walk without using crutches due to the severity of his pain.
Maxi’s Journey (Osteosarcoma Survivor)
This is the incredible story of Maxwell’s (Maxi) sarcoma journey told by his mum, Julie.
Numbers behind Maxi’s journey will astound you, and you cannot but feel so proud of him for being so brave and strong. All these by the age of 2.
- Over 90 appointments
- Over 90 tests and scans
- Over 60 leg and Hickman line dressing changes
- Over 40 finger pricks
- Presented to the emergency department 27 times (admitted 23 times)
- Received chemo 23 times
- 13 cannula or other injections
- Received 7 blood and platelet transfusions
- Underwent 4 surgeries (longest duration was nearly 9 hours)
Sarcoma Treatment | Nora’s Story
Nora Murray was diagnosed with a sarcoma at 44 and visited Johns Hopkins to find hope. Sarcomas are rare, large, complex tumors that only a few centers in the country are experienced in treating. Nora walks us through her battle with sarcoma, how she overcame it and how her quality of life has improved.
I’ll probably never know when exactly I boarded this involuntary roller coaster. It was a series of minor circumstances and events that unfortunately, or fortunately, led me to where I am today.
In late 2018 and 2019 I was complaining of fatigue and shortness of breath. Many would have attributed it to the fact I was out of shape, and needed to lose some weight. However, Dr. Janet Noy, my family physician who cares for 4 generations of my family, insisted we get some answers.