I’m a 37-year-old woman in Los Angeles who was recently diagnosed with stage 2 SCC (squamous cell carcinoma) of the tongue. I’m going in for a partial glossectomy and modified radial neck dissection this coming Thursday and they’ll determine after pathology if I’ll need radiation.
I had what seemed like a canker sore on my tongue since June and I went to multiple doctors and dentists who told me to take more vitamins and it was probably caused by my Crohn’s disease acting up even though it has been in remission for the last decade. I’ve never been a smoker. I am not a regular drinker. I am HPV negative. After 4 months of being bounced around between dental professionals and increasing jaw & ear pain, I demanded a biopsy from an ENT who also didn’t think it was necessary! I’m so glad I advocated for myself.
It is incredibly hard to find information– not only realistic expectations of side effects and quality of life, but also for young people faced with this cancer diagnosis. I haven’t received responses from multiple care groups out here. I stumbled upon the Six-Step Screening Faces Of Oral Cancer and it gave me comfort to find other people with similar stories. It’s worrisome knowing that you’ve been speaking out about this for 20 years and there are still doctors and dentists who don’t know the warning signs!
I speak a lot for work and I am fearful of losing my ability to articulate words as most of the people I have found online who have gone through a glossectomy seem to have very noticeable difficulties. I just wanted you to know that your story is inspiring and after listening to you, I have hope that I’ll be able to keep doing what I love. Thank you for providing even just a little bit of comfort in this really scary time.
This is exactly why I still do what I do, telling my story. Dental professionals need the reminder about the serious consequences to patients when the early signs are missed.
First of all, kudos to you for advocating for yourself. I, too, said,” I can’t live like this, what are you going to do now!” And the doctor replied, ‘Your tongue is small. We don’t want to cut it up unless we have to, but at this point, I guess the next thing is another biopsy.” When I heard the word, ‘guess’ it triggered a thought that I should look elsewhere for answers.
Anyhow, This makes me mad. I hear this from people in podunk towns in the midwest, but LA?!?!?!?
One thing I was told is ‘your surgery could be two hours or 12.’ They didn’t know how much of my tongue needed to be removed. If it was a large portion, they planned to reconstruct it at the same time. Needless to say, I ended up with the 12 hr surgery. My tongue was reconstructed from tissue and an artery from my arm, along with fascia from my thigh.
First things first. Where are you being treated and who is your surgeon? Is it someone who does this surgery a couple of times a week, or a couple of times a month?
Ask if you can have an oral pathologist or Heand/neck pathologist (not a general pathologist) checking for clear margins DURING the surgery, so the guesswork isn’t an issue, and no more is taken than necessary. Not knowing if the margins are clear, and not taking enough, has caused so many people to require a second surgery! It’s not a common practice, but ask anyway.
I’m happy to get on a call with you before your surgery on Thursday. I’ve been through it and will coach you through it. You are not alone, my new friend.
Why do you think this is still happening today. How do dental professionals miss the early signs of oral cancer? Should patients demand a biopsy for themselves? Please comment and share your thoughts!