#BraveLikeShannon
Name: Shannon Savoia
Diagnosis: Adenoid Cystic Carcinoma - Right Submandibular Salivary Gland
Years of Survivorship: No evidence of disease as of August 2021, receive scans every 3-6 months
Location: Wilmington, Illinois
Follow Shannon on Instagram.
Published on May 16th, 2025
“I was pregnant with my son when I found my tumor. I was misdiagnosed for a year because doctors thought I had an infected lymph node. We advocated for more testing, changed doctors, and got the correct diagnosis. I was diagnosed with ACC when he was a few months old.”
After three rounds of antibiotics to treat what they thought was a swollen lymph node, Shannon knew that it was something else. She changed her doctor and got a biopsy of the lump on her jaw. Sitting in a recliner with her 5 month old baby Luca on her chest, Shannon received a call from her ENT doctor with the biopsy results. The lump was in fact cancer and it was an extremely rare kind, Adenoid Cystic Carcinoma (ACC).
These results came when things were still partially shut down from COVID and as a new mom, Shannon felt isolated. She began a treatment plan to surgically remove the tumor and undergo high beam proton radiation.
Shannon doesn’t sugarcoat her experience. “Why is it so hard for me?“ she remembers wondering, as other patients at the treatment center seemed to bounce back faster from radiation. The radiation left her mouth covered in sores with partial facial paralysis. She had to receive a feeding tube and IV infusions because she became so malnourished and dehydrated. After 9 months of treatment, she received news that there was no evidence of disease.
Shannon’s story is marked with resilience. While bravery might have not meant that she was super positive and giving inspirational speeches throughout her experience, Shannon was brave in other ways. Getting out of bed to brush her teeth. Being a present mom for her new baby Luca. Finding other ACC survivors to attend conferences with. Shannon was brave in the way she showed up for herself and her loved ones.
Today, Shannon is training to run the Gary Bjorklund Half Marathon during Grandma’s Marathon Weekend on June 21, 2025. She’s been a runner for a long time, but she says this era of running post-cancer is the strongest she’s ever felt. She is fundraising for the Brave Like Gabe Foundation to raise money for rare cancer research and in honor of Gabe Grunewald whose story she discovered when researching her diagnosis.
How has running or staying physically active affected your journey?
“Before my diagnosis and getting sick in treatment, I ran and lifted. I was too weak during treatment/surgeries to run and not having an outlet during such a dark time was difficult. But knowing that someday I would be able to run gave me something to look forward to. It was the light at the end of the tunnel.
I am so thankful for movement and my health now. Being a cancer patient does not end once treatment is completed. Running helps to keep me mentally healthy. When I run, I am more aware of my body and building up that strength helps me to feel like I've got some part of my life back and in order.”
What advice do you have for people on staying fit throughout their recovery?
“Stay active in any way you can. You don't have to run or lift weights-you can walk, swim, yoga. A body in motion stays in motion. Movement is medicine. Those quotes are true.”
What are some of your proudest accomplishments as a cancer survivor?
“I have been a team leader for Head and Neck Cancer Alliance's Move-a-Thon the last 2 years, I attend Adenoid Cystic Internationals Survivor Symposium, I've networked with other patients/survivors/doctors. Mainly, I'm proud of myself for not letting cancer be something that happened to me, but something for me. I have not been a passive ACC patient, instead I learn what I can, advocate for others, and raise awareness/funds for rare cancer research.”
How has Gabe's story impacted you or changed the way you view life as a cancer survivor?
“Gabe's story helped me to feel seen. Someone who I viewed as an important person—not just an ordinary person like myself—had this rare disease. She also helped me to feel validated in not settling for the doctors saying, ‘ACC is rare, so we don't have a lot of information on it.’ Gabe fought, and now I feel like I'm carrying the torch for her by raising awareness and funds for rare cancer research.”
“Someone will say to me, ‘You’re so brave, I don’t know how you do it.’ Well the truth is that I am either brave or I die because the only other choice is not getting treatment. ”
What does it mean to be #BraveLikeShANNON?
“My first instinct was to start typing something…But honestly I have not thought about this in the way the BLG Foundation has. People would call me brave during treatment, but I had no choice and I didn't actually feel like I was brave. I was just doing the next step. If I wanted someone to model their journey after me, I'd want them to just keep going. Every day I woke up and did the next step (whether that was radiation, getting my feeding tube, going to speech therapy, going to physical therapy, the next surgery). I did not have a smile on my face, I was not happy, but I kept going. I'm pretty proud of that.”
WHAt Are you looking forward to in the near future?
“I am really excited for race weekend because this will be my first race since my diagnosis and treatment. Now that treatment and (some) side effects are resolved, I'm frequently looking forward to eating good food.”
