“Dear Eva,
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.
Sincerely, Kelsey”
Dear Kelsey,
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.
Eva
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!
Comments 6
I was a new graduate of Dental Hygiene when I found the first oral cancer. She was a hairdresser, smoker and partier. During the soft tissue exam I noticed a very red area behind the lower left molar and I asked my boss to come take a look. He referred the woman for biopsy and it turned out to be Oral cancer. She died about 8 months later. I felt terrible for her. It was good for me to find a positive diagnosis so early in my career because it taught me to trust my training and skills and to refer a patient for follow up.
It happened a second time just a few years ago so I made the referral for biopsy. The only problem is I was never notified following her visit to the oral surgeon which begs the question…why don’t the dentists work 8n partnership with dental hygienists?
Author
Holly, I hope the patient actually followed through with the recommendation to see the oral surgeon. Many patients are scared, and don’t go. Secondly, I sure hope the oral surgeon provides a report to the dentist for the records, but sometimes, depending on their relationship, the dental practice needs to follow up to be sure they receive the records. Then, there is the follow up with the patient about what the report says, and what they need to do to stay on top of things. The dental office needs to follow up with their patient either way. If your dentist isn’t a good partner in communicating, you can do something to protect yourself in a court of law by following up with the patient. Do you agree? Let me know how it goes!
I’ve been asking for biopsy for a year. I’ve now lost tooth #35, my throat burns and is swollen, unremovable white lesion on the swollen back of tongue, and now my sinuses have huge growths covered in white. I’m very sick and this whole time I’vehad nausau. Still no help.
Author
Lauren, get an appointment at a major medical center. You should not be living with such discomfort and growing/changing symptoms. It may not be cancer. It could be an immune disorder. But rule out cancer first. You need to find different doctors who treat you and not ignore you and your symptoms. Feel free to reach out directly and perhaps, once I know where in the country you live, I can help find someone who could better help you. Perhaps, see an oral medicine doctor: https://www.aaom.com/find-a-doctor#/
I had a sore on the left side of my tongue for about 5 months, sometimes it bothered me, and other times it was ok. I thought it was a canker sore so I kept treating it. Then I stumbled upon an article on google that made me feel the need to follow up on the issue. The first dentist tossed me to the second dentist who had no availability to see me for another three months. I searched for a different dentist and this dentist decided to cut out where the sore is and send it out for a biopsy. I received my test yesterday and it is squamous carcinoma in situ.
I have been referred to an oral surgeon who is not affiliated with any insurance company and there only takes out-of-pocket payments. It’s expensive and very devastating. I am looking for another surgeon who hopefully will take my insurance. Thanks, everyone for sharing.
Author
You took your health into your own hands, and you caught a cancer in it’s very very very early stage when it’s very survivable….KUDOS!! You should absolutely be able to find an oral surgeon who can remove the entire lesion with clear margins. Is there a dental school associated with a hospital near you? Feel free to reach out to me via email, and I can help you find a place to go.eva@evagrayzel.com. I would recommend you ask for an oral pathologist (not just a general pathologist) to make sure clear margins were obtained. It’s tricky since not all oral surgeons send pathology to an oral surgeon. Please see in touch – I’m happy to help any way I can.