A woman had half of her tongue removed and replaced with leg tissue after a cancer diagnosis. Jamie Powell, 39, was diagnosed with tongue cancer in March 2020 after discovering a raised bump on her tongue.
After undergoing tests, Jamie was told she had stage three cancer and would need half of her tongue removed as well some of the lymph nodes in her neck. She underwent the eight hour op in March 2020 and found herself having to learn how to talk and eat again - while coming to terms with her new tongue, which she says felt like a "foreign object".
She then underwent 30 rounds of radiotherapy before being given the all clear on June 30, 2020. Jamie now hosts a podcast with a fellow tongue cancer survivors talking about the reality of the disease.
Jamie, a special education worker, from Orange County, California, US, said: "It was unbelievably sad when I realised I couldn't kiss my husband, Jonathon, 40, again. I didn't realise it until I was healed and starting to feel like my former self but all of a sudden, I just realised I wouldn't be able to kiss him again and I couldn't remember the last time we kissed.
"I cried about it. I was sad. I was sad for him too - that I wasn't going to be enough. I didn't even know you could get cancer of the tongue.
"It was a massive shock to the system. My entire sense of who I was being taken away.
"It was devastating, but it was either have this surgery or I'm not going to be around. When I began to heal up, my tongue felt like a foreign object in my mouth. I had to train it to be in the right place to talk and connect it with my brain."
Jamie woke up one morning in December 2019 and noticed a bump on her tongue. She said: "I thought it was just from biting my tongue.
"I asked my dentist if I should be worried about it and they said 'no, you're fit and healthy, it's not big deal'. Weeks later it was still there, and it had gotten bigger.
"I go to the urgent care, and they said 'woah, we need to send you to a specialist' and I suddenly thought this was worse than I initially thought. They make an appointment with the ENT doctor for the end of February, so I had to wait a whole month.
"I had the ENT and she immediately sent me for a biopsy straight away which had lots of needles going into my tongue which was very painful. They told me they'd get back to me with the results. I still hadn't heard anything after a week but then on March 5, 2020, they told me it was cancer of the tongue."
Jamie says she was in "shock" after the diagnosis and days later found herself under the knife having half of her tongue removed. She said: "I had to meet with 11 doctors who all told me that I didn't fit the profile for this cancer as I didn't smoke or drink and in that time, it had grown, and it was aggressive.
"If you have a tongue cancer or any type of mouth cancer it usually spreads very quickly because of the lymph nodes in the neck. They scheduled me for surgery on March 23 and the US went into lockdown on March 16 and I wasn't sure it was going to happen.
"It was stage 3 cancer, and I was in hospital for 10 days. I was on a feeding tube and I couldn't talk. They told me I wouldn't be able to eat or talk the same way again.
"I came home 10 days after having the glossectomy - which is where they cut half my tongue out and replaced it with tissues from my leg - and removed the lymph nodes in the neck. My husband was told how to treat me through FaceTime with the doctor. He took care of me and helped with the bandages.
"When I began to heal up, my tongue felt like a foreign object in my mouth. I had to train it to be in the right place to talk and connect it with my brain."
Unfortunately for Jamie, the removal of part of her tongue was not enough to give her the all clear and she had to undergo radiotherapy in April 2020. After finally being told she was cancer-free, Jamie's focus turned to recovery and learning how to use her tongue again.
She said: "In the months after radiation was done it was terrible, I still couldn't eat. I had to talk it through with a therapist and I had a hard time being around my family when they were eating.
"I was realising everything I'd been through, and I'd have to think about the words and if I swallow or eat. I had to do a lot of speech therapy and there are a lot of life-long side effects from neck and head radiation - food will never taste the same and it changes your outlook on food and how you eat.
"The tongue still feels like a foreign object, but the doctors are amazed I can talk this well for how much I had of my tongue removed." Jamie decided to share her story in the hopes to raise more awareness about tongue cancer.
She said: "I thought it was important to share as I know how I felt. There was nobody out there that looked like me and I don't want anybody to have to feel like I did.
"I make sure to post and talk about it because the more that I share, the more I can answer questions. There aren't really any resources out there. You think about how dynamic that muscle is and how it affects so much of your daily life.
"Your dentist should be checking your teeth and your tongue - I didn't know that was something they should be doing." Despite her impressive recovery, Jamie says she still has "bad days".
She said: "Eating can still be hard and I have flare ups. I'll always have to be cautious but I'm still working through it."
