Gymnastics Coach, 42, Had a New Tongue Made from Her Thigh Muscle After Battling Oral Cancer: ‘I Had To Teach Myself How To Speak Again’

But when she developed a second white spot a year later, she was referred for another biopsy. This one would be more thorough, and more invasive. Still, the test results did not indicate cancer. Newsom's doctors were puzzled.

After a few months, the spots became sensitive and sore. They gradually morphed into a tumor on Newsom's tongue, and she was sent for a third biopsy. This time, Newsom got an answer. But the relief of getting to the bottom of her condition was muted by the seriousness of her diagnosis. Newsom had stage four squamous cell carcinoma.

From the time the spots first appeared on her tongue, Newsom had to wait three years before learning that she had skin cancer on her tongue. "No one ever mentioned it could be oral cancer," she said.

Newsom met the challenge with bravery. "When I was told, it seemed like I was being handed a death sentence there and then," she said, "but straight away my reaction was; I’m ready to fight this."

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She was ready to fight, but at some points, she couldn't avoid fearing for the worst. "When I got home that day I Googled my type of cancer and as you can imagine the results were absolutely terrifying," Newsom said. "There were images of people after having their jaws removed or sawed in half – I’d never been so scared."

Newsom was diagnosed in 2013 and scheduled for multiple rounds of chemotherapy. During her treatment, she couldn't eat or drink without extreme pain, and she sometimes couldn't even communicate with friends and family.

"Hudson, who was five at the time, didn’t know why I was always so upset and it got to the point where I couldn’t physically speak to him or my husband," she said. "A low point for me was when I went to a party with all my closest friends and I had to leave because my mouth was in so much pain."

Newsom's chemotherapy was effective, shrinking the tumor significantly, but the next necessary step was to remove the tumor completely. She visited MD Anderson Cancer Center multiple times to plan her surgery. When Newsom finally went in for the operation, it took doctors nine-and-a-half hours to remove the left side of her tongue and replace it with skin and muscle tissue from her thigh.

The recovery period from this operation was grueling. Newsom couldn't swallow or breathe unassisted, and she had to have her throat flushed with water frequently to wash away build-ups of blood and body fluid. "That was basically like being waterboarded by the nurses once or twice a day which was absolutely horrific," she said.

"The weirdest part of the whole experience was when I felt a rough texture on the thigh part of my tongue – and when I looked in the mirror it had started growing leg hair!"

Newsom spent the nine weeks after her operation undergoing 45 rounds of radiation and three additional rounds of chemotherapy. She couldn't speak, and she had to be fed through a tube inserted into her stomach for six months while she healed from the surgery.

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When Newsom finally started the process of getting acclimated to daily life with her new tongue, she continued to face new challenges. She had to teach herself to speak, eat, and drink. "I can only taste on the right side of my tongue which is the real side, and only chew on the right side because the left is attached to my gums," she said.

With the left side of her tongue sewn to her gums, Newsom's movement of her tongue is restricted. "Only the healthy side produces saliva and I can’t stick my tongue out my mouth at all, so licking things is a big no-no," she said. "A feeling I could compare it to is like having a dead arm or dead leg all the time – it is constantly tingly and numb."

Nine years after her initial diagnosis, Newsom is grateful for the life she has been able to re-build with her son and husband. She may not be able to move her tongue like she used to, but besides that, she is as agile as evershe's even back teaching gymnastics.

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Different Ways of Opening Up and Finding Support

During a cancer battle, it's important to know that you are not alone. Connecting with others can make a world of difference. For some people, this may mean leaning on family members and friends. For others, it might be finding an online support community where you can share openly and learn from other people’s experiences. Some cancer fighters may find it daunting, however, to think about embracing this vulnerability and opening up to the people in their lives.

Dr. Marianna Strongin, a licensed clinical psychologist and founder of Strong In Therapy Psychology, told SurvivorNet in a previous interview that whether someone shares the heavy news of a cancer diagnosis is their personal preference.

"I recommend sharing, I'm a therapist," Strongin said with a laugh, "But to whom and how many people is up to the person.”

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Strongin spoke specially about the case of one patient who explained to her the reasons why she didn't tell people about her cancer diagnosis. For the patient, Strongin says, "It was coming to terms with the identity of being sick."

"Being sick is something she never wanted something she never wanted to acknowledge to herself," Strongin adds. "It was safer to temporarily do that for herself," but the long-term impacts of telling others the same thing were unknown, which can be a scary thought.

"I think there are some people who can digest that information and move very quickly into treatment and how they're gonna battle it, and they want support," Strongin says. "There are some who have a harder time digesting that information and letting it be a part of being who they are. Sharing it for those people is making it more real."

Fighting cancer is extremely personal, and there's no right way to accept your diagnosis. There's no handbook, there's no wrong way, either. But regardless of what you decide, "Everyone should focus on what makes them feel good," Strongin says.

For Cameron Newsom, the support of her husband and son were indispensable in her recovery journey. She recognizes the difference that this support made for her, and she seeks to extend that compassion to other people fighting similar battles. In recent years, she has mentored several people diagnosed with the same cancer as her, offering them guidance and someone to talk to who can understand what they’re up against.

Learn more about SurvivorNet's rigorous medical review process.

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