Silenced by tongue cancer, this woman rebuilt her voice with AI
The diagnosis of Stage 4 tongue cancer, which led to the removal of her tongue and voice box at age 51, did nothing to silence this woman’s voice. Thanks to her own dogged perseverance and successful research, Sonya Sotinsky will still be able to read books to her future grandchildren … in her own voice, slight New Jersey accent and all.
Sonya's tongue cancer diagnosis
It took her dentist and orthodontist nearly a year to diagnose Sonya’s cancer. She told them at several appointments throughout the year that she was experiencing jaw pain and a strange sensation under her tongue. Then whatever she tried to drink started to dribble down her chin.
When her pain got so intense she couldn’t talk at the end of each day, Sonya became more insistent with her dentist and orthodontist. When she got into her orthodontist for an appointment, she said that after her exam he gave her “that look you don’t want to see.”
In a recent interview with NPR, now 55-year-old Sonya expressed no animosity toward the fact that the diagnosis took a long time. She didn’t talk about her oral health-care providers much beyond the fact that she had told them about her symptoms. But when she finally received a diagnosis, she took some things into her own hands, namely, preserving her voice.
Sonya’s next steps
Sonya had five weeks until her glossectomy and laryngectomy. She knew she was destined to lose her voice, and without her tongue, even an electrolarynx would not be in her future. Using these boxes make people sound very mechanical and monotone, and having seen others use them, Sonya was aware of how much of a person can be lost when they lose their voice.
Dr. Sue Yom, a radiation oncologist, spoke to NPR about people she’s dealt with who have lost their voices. "When the voice is no longer available, you can't hear yourself thinking out loud, you can't hear yourself interacting with other people," Yom said. "It impacts how your mind works."
People who lose their voices, Dr. Yom added, face more emotional distress and depression compared to people who retain their voice box after cancer treatment. Many lose their jobs and become socially isolated. Other people often overlook and misunderstand people who can’t talk, as well as those with an electrolarynx because their voice is so robotic.
Sonya set out to avoid these scenarios by recording her voice, day after day, week after week, with all its flourishes, intonations, accent, sassiness, and curse words. She declares that sarcasm and profanity are essential to her personality, and she wanted to capture it all. “Sarcasm is part of my love language,” she told NPR.
But what to do with the recordings?
Her research pays off
Sonya’s surgery was in January 2022, and artificial intelligence voices were still in the infancy stages. She did find a technology to use that gave her voice a synthetic quality, and others couldn’t understand her very well.
Then in the middle of 2024, she found what she’d been hoping for: generative AI that could replicate a person's full range of natural inflection and emotion. While 30 minutes is enough to make the generative AI work, Sonya had hours and hours of her voice ready to go. She’s now able to type into a text to speech app called Whisper, and her own voice, with all its natural inflections, comes through two speakers.
"She got her sass back," Sotinsky's daughter, Ela Fuentevilla, 23, told NPR.
Sonya learned firsthand how valuable it is to have her voice when she experienced a resurgence of her cancer. She was able to share her background and discuss treatment with her health-care providers. And her treatment for the latest bout was a success.
What’s next for Sonya?
Many people know all too well the barriers involved with insurance claims, and Sonya is no exception. While her major care was covered, her insurance carrier refuses to pay the $3,000 she spent on the initial assistive speaking technology. Also, AI-assisted devices are not yet recognized as necessary by insurance companies.
"Apparently, having a voice is not considered a medical necessity," Sonya told NPR. She does recognize the fact that insurance companies focus on extending people’s lives, but they do little to help with the cost of the quality of that extended life.
Using breast cancer and mastectomies as an example, breast reconstruction was not covered by insurance until the late 1990s. It took years of patient advocacy and data showing that reconstruction had a profound impact on women's physical and emotional well-being to make it happen. Sonya hopes voice-assisted devices will be able to follow in this path with advocacy.
There is a strong advocate in Sonya’s court; Dr. Jennifer De Los Santos.
Sonya gave up her job in architecture to become an advocate for others who have lost their voices. She founded two websites, voicebanknow.com and glossectomygirl.com. She also tells her story at conferences and webinars, where Dr. De Los Santos heard Sonya speak.
According to NPR, Dr. De Los Santos “began laying the groundwork for a clinical trial on the impact AI technology has on patients' communication and quality of life. That type of research could generate the data health insurers need to measure actuarial value and hopefully justify coverage.”
The two can use the example of how having her voice literally saved Sonya’s life when she had her second bout with cancer. The doctors were able to listen to her and understand her when she spoke with them about her history.
Ask Sonya who else helped her on her journey, and she may say, “Eloise saved my voice.” It’s one of the many children’s books she recorded for her future grandchildren.
