Sarcoma is not a well-known cancer. Unlike breast or prostate cancer, many people have never heard of this cancer until they or someone they know is diagnosed. July is Sarcoma Awareness Month, and the following are some facts about this disease.
Sarcoma is rare – it accounts for only 1% of all cancers diagnosed in adults.
Sarcoma is more common in children and young adults, accounting for approximately 15% of cancers seen in children.
Sarcoma commonly occurs in the extremities like the legs and arms, but can also arise in the abdomen and hips.
There are two main types of sarcoma: Bone and soft tissue. Soft tissue is the more common, and it can arise in the muscle, cartilage, fat, tendons and nerves.
Soft tissue sarcomas are named according to the tissue from which they arise. There are approximately 50 sub-types of sarcoma.
Most people that develop sarcoma don’t have a known risk factor, but risk factors include previous radiation therapy, certain genetic syndromes and exposure to dioxins that are used in herbicides and insecticides.
Signs and symptoms include a lump on the body that is usually painless, or abdominal pain that doesn’t go away.
There is no regular screening that is done for sarcoma like there is for breast, prostate or colon cancer.
Dr. Monica Leja with Maire Kent in July at Hudson Mills park.
Their friendship started when Maire’s cancer fight began in November 2012 as doctors linked the young woman’s flu-like symptoms to cardiac sarcoma. She had a decision to make – let the raging tumor in her heart take her life in the next few short weeks, or wage an all-out fight.
Anyone who knew Maire, a United States Army Private First Class, would know that she was going to fight, and fight she did for the next 11 months. Her journey recently came to an end with friends and family saying their final farewells today. Maire was 24.
Dr. Monika Leja with Maire Kent at Sunday’s Stomp out Sarcoma run.
I ran with my hero today! It would be a breeze for most 24-year-olds like my patient Maire Kent to take part in the Stomp Out Sarcoma 5K run and be first at the finish line.
But Maire was diagnosed with a cardiac sarcoma in 2012. Cardiac sarcoma is a rare malignant tumor that grows directly from the heart.
The condition has taken its toll on her and there was no way she would have the stamina to run the three miles even though a few years ago she ran a marathon. So I agreed to cover the distance for both of us, pushing her in a wheelchair decked out in maize and blue.
At one point, Maire had to help push us along the last hill because I was running out of gas in the heat. Together we made it to the finish line. This gives us hope that working together we can overcome this deadly disease!
There are many different types of sarcomas that attack bone, muscle, fat, or cartilage. Most of these patients are young and in the prime of their lives and many are even small children.
I grew up in Michigan, and returned to be part of the University’s new Cardio-Oncology program. More of these programs are starting across the country and cardiologists like me work with cancer specialists to minimize the impact of chemo and radiation on the heart. The U-M’s program is unique in that we also have the expertise to care for those with heart tumors.
During our long work weeks, physicians can get caught up in the daily grind of medical records, rounds, and meetings. Sometimes we forget why we are here: the privilege of taking care and being a part of our patients’ lives and families.
Today I was pushing Maire, but she and the many other patients and families out there, are pushing me to find answers and improve outcomes.
Ironically we finished several paces behind Anne Maxwell, a 25-year-old from Clarkston diagnosed last spring with a sarcoma found in her hip. Anne ran this weekend, not just in Sunday’s Stomp Out Sarcoma 5K, but in a 15K Bastille Day run the day before.
Maire is my hero and she keeps me going with her courage and smile. We finished in just under 38 minutes, amazingly not last!
Monika Leja, M.D., sees patients in the Cardio-Oncology program at the University of Michigan Frankel Cardiovascular Center. She treats cardiac tumors and collaborates with cancer specialists to prevent or minimize heart damage caused by chemotherapy and radiation.
The University of Michigan Samuel and Jean Frankel Cardiovascular Center is the top ranked heart and heart surgery program among Michigan hospitals. To learn more, visit the Heart and Vascular page on UofMHealth.org.
Due to advances in research and collaborative studies, the National Cancer Institute reports that the long-term survival for children with cancer has increased from less than 10% to almost 80% in the past 50 years.
In general, cancer in children and adolescents is rare, with particular cancers occurring more often:
brain and central nervous system tumor
tumors of developing tissues such as neuroblastoma, bone and soft tissue sarcomas
While most cancers in children occur by chance, a small portion can be linked to an inherited genetic syndrome. One study of 1,100 pediatric cancer patients evaluated by genetic specialists confirmed an inherited cancer susceptibility syndrome in 3.9% and a suspected syndrome in another 3.3%*.
Though your child may already be seeing a number of specialists, referral to a geneticist or a genetic counselor can be another important piece which may provide a better understanding of why your child developed cancer and what this diagnosis means for siblings and other family members.
If other family members have been diagnosed with cancers, this could indicate an inherited syndrome that increases risks for cancer. Some of the pediatric cancers that may suggest an inherited predisposition to cancer and warrant a referral to a genetics clinic include:
medullary thyroid cancer
adrenal cortical carcinoma
Physicians and genetic counselors in the Cancer Genetics Clinic at the University of Michigan meet with patients and families to review your family history and determine if genetic testing may help clarify risks for additional cancers in the family. Targeted screenings and other risk reduction efforts can be taken in an effort to prevent cancer in the future. The Cancer Genetics Clinic welcomes patients of all ages who may have questions about the risk of a genetic predisposition in their family.
A new diagnosis of cancer, especially a rare cancer, can raise more questions than answers, even after meeting with many specialists. Often patients diagnosed with a rare cancer wonder “Why did I get this cancer?” “Does this mean my family members, my children, brothers or sisters are at risk for cancer too?” “What can I do? What can they do?”
Sarcomas, cancers of the bone or soft tissue (including muscle), are one of these rare cancers that many people may not be aware of until a friend or loved one is diagnosed. For most patients diagnosed with sarcoma, the cause is not known. There are some known risk factors that increase risk for sarcoma. Excessive exposure to chemicals or radiation has been linked to an increased risk of developing sarcoma. Certain genetic, or inherited, conditions can also be associated with sarcomas.
If you, a friend or family member has been diagnosed with sarcoma, it may be helpful to ask some questions about your family history. Sit down with your family members, and ask:
Have any other family members had cancer? Relatives with sarcoma, breast cancer, colon cancer, leukemia or lymphoma are especially important.
How old were relatives when they were diagnosed with cancer?
Have any children in the family had cancer?
As you gather this information, share it with your oncologist or primary care physician, and talk with him or her about whether a referral for genetic counseling and genetic testing may be helpful. Genetic counselors and physicians in our Cancer Genetics Clinic can review your family history and help to determine if genetic testing may be needed. They can also talk with you about possible results of genetic testing, and how this information would be used. If the cancer risk in your family is inherited, special screening may be recommended to help with early detection and prevention.
Sarcoma is a term used to describe a whole family of cancers that arise in the body’s connective tissues, which include fat, muscle, blood vessels, deep skin tissues, nerves, bones and cartilage. Drug-related side effects for sarcoma often include nausea, mouth sores and lack of appetite that hinder one’s ability to consume adequate food and/or beverages.
Proper nutrition can help you tolerate treatments better, minimize complications and maintain a better quality of life. Even if you are overweight, weight loss is not usually recommended during treatment. It boils down to being able to consume enough calories, protein and fluid to maintain your usual weight and muscle strength.
How can one continue to eat and drink sufficiently when appetite is poor or it is painful? Continue reading →
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