A young woman has shared how a white spot on her tongue turned out to be cancer – and has left her permanently struggling to eat.
Kat Howell was just 29 when she became aware of the spot when her dentist noticed it during a routine cleaning.
The now 32-year-old was referred to an oral surgeon, but she claims her dentist told her she had likely just “bitten her tongue”.
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But after an incident where she scratched the side of her tongue while eating a salad at a restaurant and was left in pain, further tests revealed the terrifying truth – Kat had tongue cancer.
“I burst into hysterical tears,” Kat, from Boston, US, told Need To Know of the day she was diagnosed.
“I tried to call my mom, but she couldn’t understand me.
“I had to give the surgeon the phone so they could speak to her.”
Kat had ended up with a deep gash on the left side of her tongue after eating a pecan salad in a restaurant in in August 2019 – six months after her dentist first spotted the spot.
In pain, she went to her dentist and saw an oral surgeon the same day for a biopsy.
It was during the follow-up appointment the next month that she was diagnosed with squamous cell carcinoma.
Kat said: “I didn’t know what this meant, and they clarified that I had cancer.
“It was very abrupt and jarring.
“It felt surreal.
“I felt completely overwhelmed, uninformed, and helpless.
“I also felt confused.
“I kept thinking ‘how and why did this happen?’ – it doesn’t make sense.'”
In November 2019, Kat had major surgery to remove the cancer.
She had to have part of her tongue removed and then rebuilt using a graft from her forearm, as well as having all the lymph nodes in her neck removed.
She said: “”It’s actually really cool to me to know part of my arm rebuilt my tongue.
“After my surgery, a friend described it as the doctors had ‘played human Legos with my body’, which is my favourite description to date.
“I also had a wrist tattoo on my left arm, which is now attached to my tongue via the flap.
“I like thinking about that and knowing that my flap is even more unique and meaningful.
“The tattoo was a script of the word ‘fortitude’, which is very fitting.”
A month after the surgery, she began radiation treatment.
She said: “Surgery was really intense, but ultimately, I started feeling better relatively quickly.
“Radiation was a completely different story.
“I got oral thrush, which is a common side effect of head and neck radiation and is extremely painful.
“I was on a fully liquid diet and I had to use a syringe to avoid all of the painful mouth sores.
“I couldn’t sleep, couldn’t lie down, couldn’t eat, and couldn’t let the pain medication wear off without the risk of being brought to tears from the level of pain.
“Eventually, it got to the point that I 100% believed that I would never be able to eat solid food again.
“I was already biologically starving, so I didn’t even feel hungry and therefore wasn’t motivated or interested in trying to eat anymore.”
Four years on, Kat has no evidence of disease or recurrence, however, she won’t be declared officially cancer-free until five years after the end of her treatment.
While she started to feel like the “weight” on her shoulders “was finally starting to lift” two years post-treatment, she is still struggling with the side effects of her surgery and radiation.
She said: “I have no salivary glands which impacts the foods that I can physically eat.
“Radiation caused increased sensitivity to acidity and spiciness in foods, further restricting what I’m able to eat.
“I sometimes get tired of having to try so hard to eat.
“I’m so tired of thinking about food all of the time and also having to do so much extra work prepping and planning so I can navigate the world.”
Kat is now passionate about raising awareness for oral cancer.
She said: “I’m so proud of advocating for myself and other young adults who’ve had similar tongue or head and neck cancers.
“Because I’m so open about what I went through, friends and co-workers are more aware and they’re able to accommodate so that I can still participate in things.
“This openness has also prompted at least a few folks I know to take their dental hygiene and doctor recommendations more seriously, which is always a good thing.”
Kat added: “If something’s not going away, keep advocating for yourself.
“No one is too young, too healthy, or too immune for cancer.”
