Why We Need Greater Education Around Sarcoma

What is sarcoma and why is it sometimes called the “forgotten cancer?"

The National Cancer Institute defines sarcoma as “a type of cancer that begins in bone or in the soft tissues of the body, including cartilage, fat, muscle, blood vessels, fibrous tissue, or other connective or supportive tissues.” Sarcomas are rare and most commonly affect children and young adults. Divided into two main groups – bone sarcomas and soft tissue sarcomas – they are further divided into subtypes “based on the type of presumed cell of origin found in the tumor.” With over 50 different subtypes, sarcomas are most commonly found in the legs, hands, arms, head, neck, chest, shoulders, abdomen, and hips.

The majority of soft-tissue sarcomas are found in extremities and can appear as “a painless lump under the skin, often on an arm or a leg.” According to the American Cancer Society, there will be 13,040 new cases of soft tissue sarcomas diagnosed in 2018.

I’m a survivor of soft tissue sarcoma – liposarcoma, specifically.

This July is the first July that I knew sarcoma awareness month existed. Facing a cancer diagnosis is hard enough without the fact that none of your family members or friends have ever heard about it. The purpose of sarcoma awareness month is to encourage research, drug development, awareness, understanding, support, and education to improve the lives of those impacted by sarcoma.

Sarcoma doesn’t have to be the “forgotten cancer.” Through greater understanding and education, patients and survivors don’t have to feel left behind or underrepresented. Through improved awareness, cancer patients, family members, friends, and loved ones will not have to embark on a diagnostic odyssey that leads to a misdiagnosis or a diagnosis that comes too late.

At the Cancer Support Community, we offer support for people whose lives have been impacted by not only sarcoma, but by all types of cancer. By calling our toll-free Cancer Support Helpline  (available Monday through Friday from 9:00 a.m. to 9:00 p.m. EST) at 1-888-793-9355, you can speak to a licensed mental health professional. Through MyLifeLine, you can create a personal webpage and update family and friends on how you’re doing. Through the “Helping Calendar” feature on MyLifeLine, you can let family and friends know when your next follow-up MRI or CT scan is scheduled. The “Learning Links” feature of MyLifeLine can help you learn more about your specific type of cancer. 

Also through MyLifeLine, you can take part in discussion boards moderated by a licensed professional. These discussion boards are available 24/7 and they will allow you to connect with other cancer patients and survivors and talk about the issues that are important to you. The “Living With Cancer” tab on our website connects you to a variety of topics that may be helpful when facing a sarcoma diagnosis, such as “Managing Stress from Cancer,” “Beyond Treatment,” and “Side Effects.” As a sarcoma patient or survivor, you can participate in our Cancer Experience Registry and share your experience, identify issues that are important to you, and provide further representation for those impacted by sarcoma – an already underrepresented group within the cancer community.

By joining the Grassroots Advocacy Network, you can receive monthly newsletters and stay up-to-date on the issues facing patients with cancer and their loved ones. You will also be part of a network that interacts with Capitol Hill and policy makers, helping to make a difference on both the state and federal levels for sarcoma patients and survivors.

I can tell you that being a survivor of a “forgotten cancer” isn’t very comforting. That’s why I’m doing everything in my power to educate people on what sarcoma is, to remind people why it’s important to recognize how “forgotten” it is, and to advocate for sarcoma awareness.