July 5th, 2017
| Caregiver: Soft Tissue Sarcoma
The phone rang. The doctors finally determined what type of cancer my husband had: Mesenchymal Chondrosarcoma. We couldn't even say it, let alone spell it. His oncologist knew little to nothing about the disease. We turned to the internet, thinking surely someone must understand this diagnosis.
The first few articles confirmed our fears: it’s rare and it’s deadly. As we continued our search, we found something infinitely more valuable that we didn’t know we needed: a supportive social media community. We met patients with knowledge and resources. We met survivors with strength and hope. We met families with empathy and compassion. We found friends we could turn to with our questions, fears, concerns, celebrations, and disappointments. We were welcomed into a new family.
For Sarcoma Awareness Month, I turned to this community of friends to ask what they want people to know about sarcoma. Their responses, while coming from diverse backgrounds, had a lot in common. Here's what they want you to know:
1. Sarcoma is cancer.
It seems obvious to those who have been affected by it, but until you've had reason to understand the word, you probably don't. "Sarcoma" comes from a Greek word for "fleshy growth," and it's a cancer of the connective tissues.
2. Sarcoma can affect any body part.
Pick any section of your body from your head to your toes, and someone's had a sarcoma tumor there. It can originate from fat, nerves, muscles, bone, cartilage, joints, tendons, or blood vessels. There are over 50 subtypes. The symptoms vary, but often include lumps, bumps, swelling, or pain.
3. Sarcoma can affect anyone.
There is no screening, no prevention, no lifestyle factors, and very rarely a hereditary link. Sarcoma does not discriminate. It can affect people of any age from 0 to 100, but it affects young people in particularly high proportions.
4. Sarcoma is sneaky.
My husband's seemingly innocent back pain at age 28 turned into a devastating cancer diagnosis. Our friend's weird bump on his toe suddenly became life-threatening. Sarcoma can come when you least expect it, or you may have to push and prod until doctors believe something is wrong. Incorrect and late diagnoses are common. After diagnosis, sarcoma often continues its sneaky ways by metastasizing at times and in places you didn't expect. Even after successful treatment, sarcoma requires many years of follow-up, because it can recur long after you think it should be gone.
5. Sarcoma requires intense and specialized treatment.
Because sarcoma is aggressive, the treatment must be aggressive also. Patients, survivors, and families urge one another to seek care from a dedicated team of sarcoma specialists who will customize the best plan for an individual. Treatment often involves disfiguring surgeries including amputations, bone removal, significant tissue excision, and complicated reconstructions. You can find sarcoma survivors with scars across their chest, on their face, down their back, and up their arms and legs.
High doses of intense chemotherapy drugs are often used. Radiation, immunotherapy, or other treatments may be recommended depending on the situation. Sometimes the effects of sarcoma are visually obvious, and other times survivors look perfectly healthy and well.
6. Sarcoma research is underfunded.
Because sarcoma is one of the rarer types of cancer, it seldom gets much attention. Unfortunately, this translates to less scientific understanding and fewer treatment options than what is needed. Children, parents, spouses, siblings, and friends are dying of sarcoma across the world. It needs to stop. We need research, we need answers, and we need a cure.
7. We are stronger than sarcoma.
What sarcoma survivors lack in arms, legs, toes, ribs, shoulders, and hips, they make up for in heart. The sarcoma community is one of the most welcoming, compassionate, and strongest groups I have ever seen. When someone is feeling weak, countless friends are there to lift and strengthen. They support each other, check in on each other, and build lasting friendships. They laugh, cry, celebrate, and mourn together. No matter who you are, where you are from, or what your story is, they will invite you into their hearts and love you. They may not always have successful medical outcomes, but they beat sarcoma time and again with their kindness and strength.
Sarcoma is a devastating disease that affects far too many people worldwide. My family has been unfortunate to be in this group. However, we have been so fortunate to find resources, support, understanding, and friendship by connecting with other sarcoma survivors and their families. I am forever grateful for the help they've provided in writing this article, but even more so for the help they've provided in being our friends.
How do you plan on spreading awareness of sarcoma? Share your ideas in the comments below.
Photo courtesy of the author.
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Julieann is a 26-year-old chemist and mom living in Salt Lake City. Her husband, Ken, was diagnosed with mesenchymal chondrosarcoma in early 2016. Her blog, contemplatingcancer.com, examines life through the lens of an aggressive cancer diagnosis.