“Having a Voice is Such a Powerful Thing”
From childhood cancer survivor to cancer researcher:
Our conversation with Brittany Avin
“They told me I was yelling too much in my basketball games,” Brittany Avin says of her doctor and parents. It turns out the loquacious teenager’s problem was far more serious – thyroid cancer that had paralyzed her vocal cord.
Having regained her voice, Brittany is very serious about using it – both as a childhood cancer survivor and now as a cancer researcher at Johns Hopkins University studying the cancer she once had.
Brittany took some time to share her story with ACS CAN and challenge all of us to appreciate the power of our voice.
Tell me about your story.
I was 13 years old and lost my voice completely for about six months. When I first saw a doctor for my issue, they told me I was yelling too much in my basketball games and to rest my voice. When my voice did not get better, the doctors spent months trying to figure out the cause – allergies, laryngitis, and other diagnoses.
Finally, they referred me to a specialist who scoped me and saw one of my vocal cords was paralyzed. The paralysis was due to a tumor that had spread to the nerve feeding my vocal cord. It was papillary thyroid cancer. I had surgery a month later that removed my thyroid plus numerous lymph nodes, with over twenty-five nodes being cancerous.
By then, the nerve feeding the vocal cord was not able to be salvaged due to the tumor growth, and I woke up from my first surgery to find out the paralysis was permanent. I’ve had two surgeries since for an implant that allows me to speak normally.
What was your treatment like?
I was living in North Carolina and originally treated there, but the doctors back home didn’t have enough experience with someone so young with thyroid cancer, so they sent me to New York City to a pediatric specialist. My parents and I had to temporarily stay in New York City so I could be seen at Sloan Kettering.
I also went through radioactive iodine treatment to get rid of the rest of the cancer in my body. You’re literally radioactive, so I had to be kept in isolation for two weeks. The process was very hard emotionally and mentally for my parents and me.
This must have been very hard for your parents.
They were my greatest support system. Through the process, I couldn’t talk so they acted as my translators. I’m an only child, and I can’t imagine what it was like for them to go through that. They both had to take time off work. From a financial, physical and emotional perspective, it was very draining for them.
It’s pretty remarkable that you’re now conducting medical research on the type of cancer that you once had. Talk about the research work you do now.
I’m in a thyroid cancer lab at Johns Hopkins University in Baltimore. We are looking at biomarkers for thyroid cancer. My project is trying to understand how cancer cells hijack the normal system. We want patients to not just receive broad-based chemotherapy, but to receive more targeted treatment.
What I hope to accomplish in my research is to help patients live longer and have a better quality of life. Having been a patient, I understand we don’t want to extend a life if it’s a quality of life the patient won’t feel is worth living.
You said that cancer is part of your identity now. How so?
Basically, it’s in every single thing I do. It’s guided the trajectory of my career – pursuing a PhD at Johns Hopkins, working in a thyroid cancer lab, wanting to help more, and getting involved with ACS CAN. I do a lot around advocacy, education and awareness.
When did you decide that cancer would always be part of your identity?
Going through cancer as a middle schooler, I didn’t know anyone else going through it. It can be isolating. You can feel like the ‘cancer girl’ sometimes. I tried getting away from that, getting into sports at school to escape that label.
Then, I realized I’m not just a statistic. I accepted that I can be a ‘cancer girl.’ In high school, people were genuinely interested in what I went through. I got involved in support groups and shared my stories with others. I was seeing that there was a benefit to my story and began taking on that role.
Why is advocacy important?
For me, having a voice is such a powerful thing. It is so vital that if you have a voice to make sure it’s used.
As constituents, we have a duty to make our voices heard – to tell our representatives what we care about and be sure they don’t lose sight of that. Advocacy allows me to share what’s important to me that’s also so important to so many others around the world. It’s a duty I feel is necessary to make sure our survivor group is heard, and that the government enacts change to better the lives of cancer survivors and patients.
And at ACS CAN and the American Cancer Society, I can’t speak enough about how much their resources and materials have helped me. Being part of that community makes me feel like I’m not alone. I see that the issues that I think are important are also important to others too.
What needs to improve in treating childhood cancers?
We’re such an enigma. There’s no standard sense of care. As a patient at Sloan Kettering, I was in the pediatric cancer unit. We’re still lumped as one – in totality. Yet, pediatric cancers are different.
We need better measures of determining if the cancer is going to spread – if it’s indolent vs. metastatic. Right now, everyone receives the same type of treatment that assumes the cancer is going to metastasize. So, they’re going through more intensive surgery and aggressive treatment that they might not have needed.
We also need an openness and access to clinical trials for children. A lot of trials aren’t open to all ages. And we need to be conducting long-term follow-up of those with pediatric cancer. We don’t know what the long-term side effects are going to be. The doctors don’t have any idea what that’s going to look like for me when I’m 50 or 60.
As a survivor and a researcher, what are your hopes for the battle against childhood cancer?
An overall greater awareness as a society. Most people are aware that October is Breast Cancer Awareness Month. Most people don’t know last month was Childhood Cancer Awareness Month.
All cancers are not the same, especially for pediatric cancer. There won’t be an end-all be-all cure for everything. There will be small steps.
From a governmental standpoint, I want them to be more aware, but also caring and more compassionate. If I can use my passion to infuse that passion in them – even a little – that’s a success.