Stef Gayhart - Resident Blogger
Recently, I asked some members of the online support group of which I’m a member, The Young Tongues, to describe their experiences with diagnosis and breaking the news to their loved ones.
My own experience closely shadowed the typical 5 stages of grief as described by Elizabeth Kübler-Ross. Initially, I think I was in denial. I understood everything that was happening, but it didn’t seem real. It was almost like I was watching it happen to someone else. I remember when I called my parents to tell them the doctor had confirmed his suspicion with the biopsy results, my mom and dad both started sobbing. I had no idea how to handle that. So I left work to go comfort them. I gratefully accepted gifts and cards and calls and visits throughout it all, but it never felt real until I came home from the hospital after my surgery. That’s when all the other stages of grief -- anger, depression, bargaining, and eventually acceptance – finally let loose and I realized oh my god this is my life now.

When Susan was diagnosed after a year of symptoms and seeking care from multiple specialists, she states “Emotions including shock, self-pity, anger, and fear were felt first...emotions I still struggle with today post-surgery and treatment.” She adds that she’s now added gratitude to the list but admits it’s still a daily struggle to replace the negative emotions with joy.
Ben, who was newly married when diagnosed in October 2017, described feeling nothing and everything all at once. He said he sat calmly through the diagnosis discussion and plans for surgery to remove over three-quarters of his tongue because his mind was still reeling from the news, while his wife was tearing up. It wasn’t until later that he became worried about what this all meant for his future and then angry that this was happening to him: “I tune in to hear a lying politician [and think] hold on why the hell does he get to keep his lying tongue but I lose mine. Tears in my eyes I look at the tumor in the mirror ‘fuck you, you cowardly bastard.’” 
Jamie was diagnosed in March of 2020 so also had the pandemic to deal with. She went through surgery and treatment alone and said she was embarrassed to tell many people because she had no idea why or how this happened to her. It seems many of us in the young adult community go through the struggle of trying to explain there isn’t always a “cause” like we’ve been conditioned to think. Sometimes our bodies just do weird stuff!
Barbara, who was 31 at diagnosis and engaged to be married, says she heard the diagnosis and looked at her fiancé across the room who looked absolutely crushed. She, on the other hand, started asking about how long she would be out after surgery and if she could go on a planned business trip. It wasn’t until a nurse placed her hand on her arm that she began to cry, realizing she was the patient, this was real, and she would have to tell her parents that their daughter had cancer. Veselina remembers being strong for everyone around her – she supported her support system. She said she would cry alone but tell everyone “everything is fine,” but she credits her positivity and strength as two of the traits that helped her through the worst moments. Naomi worried about telling her dad and brother because they had lost her mother to breast cancer years before and this diagnosis brought back all the feelings of grief. She also worried about her kids hearing bad things about cancer and still gets emotional when she recalls telling them the news.

Many of the members in our support group dealt with delays in diagnosis because of our ages and lack of risk factors. I saw two dentists and an ENT before I finally got the CT scan that caught their attention and got me a referral to a specialist ENT. Before he even took the biopsy he told me I likely had tongue cancer and scheduled my surgery. I was lucky, it only took about 2 months of symptoms worsening before mine was finally diagnosed.
It took Naidy 6 months of seeing various providers who brushed her off until her rheumatologist (who she saw regularly for an autoimmune disorder) told her she was concerned. She followed up with her dentist and requested a biopsy. A few days later she received her cancer diagnosis 3 days before her 28th birthday. Fiona also waited 6 long months before a provider (the same provider who initially told her to stop biting her tongue in her sleep) became alarmed enough to refer her to the specialist who would finally diagnose her with cancer. These delays in diagnosis created issues for many of us, who wound up with advanced stage disease by the time we finally started treatment.
If you or someone you know has recently been diagnosed with tongue cancer, please know that any and all of these emotions in any shape or form are completely normal and valid.
There are many people out here who are willing and able to support you through it!

We understand, we see you, and we feel you.