Cancer Stole Her Voice. Curse Words, Children’s Books and AI Saved It

When doctors told her they had to remove her tongue and voice box to save her life from the cancer that invaded her mouth, Sonya Sotinsky recorded herself saying the things she would never again be able to say.

“I’m proud of you,” “happy birthday” and “I love you” topped the phrases she banked for her husband and two daughters, as well as “I’ll be right with you,” intended for customers at the architecture firm she helped run in Tucson, Arizona.

But one of the biggest categories of sound files was a string of curse words and expletive-laden sayings in her signature inflection. If the voice is the primary expression of personality, then profanity is essential to Sotinsky’s.

“Other people project what they think your personality is. When you can’t use your voice, it is very, very frustrating. I have silently screamed and screamed at there being no scream,” Sotinsky typed into a wireless keyboard she now carries everywhere. “What the literal you know what?”

Pervasive mouth cancer propelled Sotinsky to explore the existential importance of the human voice. Her unique intonation, cadence and slight New Jersey accent were fingerprints of her identity. How we speak is how we express ourselves, connect with others and make sense of the world. Sotinsky refused to be silenced.

While her doctors and insurance company saved her life, she said they showed little interest in saving her voice, so she set out on her own to research and identify the artificial intelligence company that could. It used the recordings Sotinsky banked of her natural voice to build an exact replica now stored in an app on her phone, allowing her to type and speak once again with a full range of sentiment and sarcasm.

“She got her sass back,” said Sotinsky’s daughter, Ela Fuentevilla. “When we heard her AI voice, we all cried, my sister, my dad and I. It’s crazy similar.”

It took close to a year for doctors to catch Sotinsky’s cancer. She complained to her dentist and orthodontist multiple times about pain in her tooth and jaw and a strange sensation under her tongue.

She had trouble drinking, water regularly dribbling down her chin. But they sent her away, once with a mouth guard to correct a jaw disorder, another time with a prescription for Botox treatments to relax the jaw muscles. When the pain got so intense she could no longer speak at the end of each day, Sotinsky insisted that the orthodontist take a closer look at her mouth.

“A shadow cast over his face. I saw it when he leaned back — that look you don’t want to see,” Sotinsky said. “That look that I probably shouldn’t have missed this.”

Head and neck cancer rates in the U.S. have declined steadily in recent decades, in step with declines in smoking, chewing tobacco and drinking. HPV-related throat cancers, contracted through oral sex and even kissing, have gone up, accounting for 70% of roughly 60,000 new head and neck cancer diagnoses each year. Uptake of a 2006 HPV vaccine that can prevent such cancers has been modest, with about 60% of adolescents and less than 16% of adults up to date on their shots.

Sotinsky’s cancer likely derived from the third common cause: a genetic mutation or day-to-day cut, bite or burn to the mouth that stimulated abnormal cell growth during the healing process. By the time Sotinsky arrived at UCSF’s oncology department for treatment, the cancerous cells were so widespread that surgeons had to remove her entire tongue and her voice box. In medical terms, a total glossectomy and laryngectomy.

“Laryngectomy is one of the most terrifying and impactful outcomes for a patient surviving cancer,” said Dr. Sue Yom, Sotinsky’s radiation oncologist at UCSF.

People who lose their voice box, she added, are at higher risk for long-term emotional distress, depression and physical pain compared to those who retain it after treatment. Close to a third lose their job and social isolation is profound. Mouth and throat cancer survivors often become unable to swallow or eat solid foods around the same time they become unable to speak, making it difficult to join family gatherings that revolve around food and take place in noisy settings where assistive speaking technologies don’t work well.

“Your voice is your identity,” Yom said. “Communication is not only how we express ourselves and relate to other people, but also how we make sense of the world. When the voice is no longer available, you can’t hear yourself thinking out loud, you can’t hear yourself interacting with other people. It impacts how your mind works.”

Sotinsky understood this instinctively when she sat down to record her phrases and curse words. Thinking about the grandchildren she desperately hoped to see born one day, she also recorded herself reading more than a dozen children’s books, from Eloise to Dr. Seuss, to play for them one day at bedtime. In the five weeks between her diagnosis and surgery, she banked as much of her voice as she could manage.

Most laryngectomy patients learn to speak again with an electrolarynx, a small battery-operated box held against the throat that produces a monotonic, mechanical voice. But without a tongue to shape her words, Sotinsky knew that wouldn’t work. At the time of her surgery in January 2022, AI voices were still in their infancy. The best technology she could find yielded a synthetic version of her voice, but it was still flat and robotic and others strained to understand what she said or inferred the wrong meaning.

She got by until mid-2024 when she discovered Eleven Labs, an AI company that relied on her children’s book readings and banked phrases to build the full, rounded voice clone she uses today. It gets funneled through a text-to-speech app on Sotinsky’s phone, called Whisper, that translates what she types into her AI voice and broadcasts it through portable speakers. Her doctors were awestruck when they heard it.

“Sometimes people inadvertently equate loss of voice with a loss of intelligence,” Yom said. “And what Sonya really shows is, ‘I have a lot of ideas. I have a lot to say. I can take my place with anybody speaking my mind.’”

Yom was blown away by the force and beauty of Sotinsky’s AI voice, but also all the effort and resourcefulness that went into making it happen. Most doctors and speech therapists who work with head and neck cancer patients don’t realize AI software can be used this way, and with their focus on saving lives, Yom said, they often don’t have the bandwidth to encourage patients to record their voices before losing them.

Health insurance companies likewise prioritize treatments that extend life over those that improve its quality — and typically avoid covering new technologies until data proves their actuarial value. Sotinsky and her daughter spent months wrangling with claims adjusters at Blue Cross Blue Shield of Arizona, but the insurer refused to reimburse Sotinsky for the $3,000 she spent on her initial assistive speaking technology.

“Apparently, having a voice is not considered a medical necessity,” Sotinsky quipped, her AI voice edged with sarcasm.

Her daughter was taken aback by the insurance denial.

“We were like, ‘How can these people not think that you need this?’” said Fuentevilla, 22, nodding toward her mom. “You get to a point where you can’t argue with them.”

Sotinsky now pays the $99 monthly fee for her AI voice clone out of pocket.

“While health plans cover both routine and life-saving care, assistive communication devices are typically not covered,” said Teresa Joseph, a spokesperson for Blue Cross Blue Shield of Arizona. “As AI provides opportunities to impact health, we imagine that coverage criteria will evolve nationally.”

Sotinsky believes insurance companies and research agencies have historically invested little in solving the voice problems of head and neck cancer patients because of the social perception that their disease is somehow their fault: the result of smoking, chewing tobacco, or having too much sex.

“We have no voice,” she said with a raised eyebrow. “The population is small, not well respected, not got a lot of advocates.”

She resolved to use her newfound voice to help others regain theirs.

Sotinsky built two websites detailing her voice banking journey — voicebanknow.com and glossectomygirl.com. She tells her story at conferences and webinars, including an oncology conference Yom organized for 80 scientists. One doctor who attended, Jennifer De Los Santos, was so inspired by hearing Sotinsky’s voice that she began laying the groundwork for a clinical trial on the impact AI technology has on patients’ communication and quality of life, generating the data health insurers need to measure actuarial value.

“That will allow us to justify getting it funded,” said De Los Santos, a head and neck cancer researcher and professor at Washington University in St. Louis.

Breast cancer survivors faced a similar battle in the 1980s and 90s, she added. Insurers initially refused to cover the cost of breast reconstruction after a mastectomy, calling the procedure cosmetic and unnecessary. It took years of patient advocacy and carefully crafted data showing reconstruction had a profound impact on women’s physical and emotional well-being before the federal government mandated insurance coverage in 1998.

Both De Los Santos and Yom said research data on AI voice clones will likely follow a similar path, eventually proving that a fully functioning, natural-sounding, highly personal voice can lead to stronger social connections, better job prospects and, ultimately, a longer life.

In the meantime, Eleven Labs started a charity program dedicated to building one million voices for free for people with ALS, head and neck cancer and other medical conditions. Its primary commercial business — providing AI voiceovers to dub films into 32 languages — has been so “wildly successful” that it generates enough revenue to subsidize free voices for those in need, said Sophia Noel, who runs the impact program.

“Now other people who are in silence can have their voices back,” Sotinsky said, tears welling in her eyes. It was the outcome she had always hoped for when she began spreading the word to others and asking patient nonprofits to forge partnerships with AI companies.

But she slowed down her one-woman-advocacy freight train recently. Her cancer resurged in her lungs and liver earlier this year, so she redirected her energy back to managing her own health and survival. Being able to communicate with her doctors at UCSF and participate fully in developing a treatment plan has shown her just how “medically necessary” having a voice is.

She noticed doctors and nurses take her more seriously. They don’t tune out the way people often did when she relied on her more robotic, synthesized voice. It seemed they saw her as more fully human.

“If someone can only communicate using a few words at a time and not elaborate and interface more fully, it’s natural that you can’t detect that they have more depth of thought,” she said. “Being able to dialogue with my care team in a more seamless way is vital.”

Still, while doctors cleared her of the latest cancer recurrence, Sotinsky said she is confronting the odds of her cancer more fully, facing the reality that she will likely die much sooner than she wants. So Sotinsky directed the power of her voice back to her family, connecting with them, joking with them.

All over again, she realized how crucial her voice is for maintaining perspective on life and a sense of humor in the face of death.

“I tend to forget and think I am fine, when in reality, this is forever now. Emotionally, you start to get cocky again and this was like, ‘Whoa, bitch, we ain’t playing.’ This cancer is real,” Sotinsky said, typing her next phrase with a mischievous grin.

“Sarcasm is part of my love language.”