TCA Advocate Discusses Sarcoma Awareness Month

We had a chance to sit down and have a Q&A with one of Teen Cancer America’s (TCA) Young Ambassadors, Gailon, to discuss Sarcoma Awareness Month.

  1. According the National Foundation For Cancer Research, Sarcoma is often deemed the “forgotten cancer” because of its rarity. Sarcomas are cancers that start in bone, muscle, connective tissue, blood vessels or fat, and can be found anywhere in the body.

  2. Adolescents and Young Adults (AYA) with ‘pediatric sarcomas’ face more than the usual challenge from cancer, making up 11% of all cancer diagnoses in teenagers and young people (15-24 years).

If you would like to learn more about management of sarcomas and survival statistics in AYAs, please visit here.

 

What kind of Sarcoma did you have?

I was diagnosed with small round blue cell undifferentiated sarcoma.

  1. Does telling your story get easier or harder over time?

For me, telling my story has gotten easier over time. Since I am an oncology social worker, I spend most of my day listening to other people tell me their stories. I think that there is something very therapeutic about sharing an experience like young adult cancer. Prior to getting diagnosed, I don’t think my friends and I thought about cancer much at all. Telling my story has helped cancer to feel less like a scary unknown entity and more like something that I can manage.

  1. You were misdiagnosed with “Bursitis” and told to take Aleve and everything would be okay? What made you get a second opinion?

I have a condition called Ehlers Danlos Syndrome, which causes pain in my joints, so bursitis did not seem like that unlikely of a diagnosis to me. I have dealt with chronic pain all my life and had many doctors who told me that this was what I had to learn to live with, so when the doctor at urgent care told me that is what she thought was going on I felt okay just leaving it at that. My mom was the one who encouraged me to get a second opinion because she could tell how severely the pain was affecting me. She asked my primary care doctor to order and MRI for additional imaging. That was the test that finally showed my tumor for the first time and eventually led to my diagnosis.

  1. Has hearing stories from other patients, survivors, or caregivers helped you in your journey?

Hearing stories from other people affected by cancer has been immensely helpful for me. After my diagnosis, I felt like I had gone to a place none of my friends had been to before and no matter how hard I tried to describe it and how willing they were to try to understand, it was still an isolating experience. Meeting other young adult cancer patients and survivors gave me the validation that I am not the only person who has felt the way that I did. There are few things that have brought me as much comfort as hearing someone say “that happened to you too!?”

  1. What was it like being in college and having to go through treatment?

I wasn’t able to attend classes while undergoing treatment, which was probably one of the most difficult things for me to process at that time. I hated knowing that all of my friends lives were moving forward at our college while mine had been put on hold. When I returned, I was welcomed back by my friends but there were still awkward moments, like being the only bald girl in class, that made me feel very separate from everyone. My campus was pretty small and I think word about my situation spread pretty quickly once I returned. All of my friends were extremely supportive of me taking the time that I needed to transition back into college life. They helped me to realize how exciting the milestones I was experiencing, such as getting my first clean scan post-treatment, were. In terms of the support I received from my friends and family, my first semester back at college is one that I look back on very fondly.

However, one aspect that I really struggled with was learning how to talk about my cancer and treatment. When I was getting ready to apply for internships and then jobs in the social work field, I was told by mentors never to tell anyone in my job or internship that I had gone through treatment. Their reasoning was that the employer may think that I was somehow not a good fit for the job because of all that I had gone through and how it could impact my ability to show up for patients while they underwent their own treatment. This caused me to feel a lot of shame about my diagnosis and the person that I had become following treatment. However, in my first year of grad school I did a wonderful internship at a cancer treatment center in Seattle where my supervisor taught me the exact opposite. When I confided in her what I had been told before, she challenged it by asking if I would even want to work at a place where my diagnosis would automatically be thought of as a reason not to employ me.  Out of all my career advice, this is what has stuck with me the most.

Having since graduated and focusing on surrounding myself with people who are proud of me and all that I have accomplished has helped me to not feel ashamed. I think that being able to speak openly and candidly about my experience with my friends and family has been one of the main factors in helping me to no longer feel this shame.

  1. If there was any information that you could share to any AYA going through treatment, what would it be and why?

I recently started listening to a podcast called Terrible, Thanks for Asking which I personally think that everyone should check out. During one of the first episodes the host, Nora McInerny, said, “You are allowed all of your multitudes and all of your feelings.” This is something that I wish I’d heard during treatment.