A few weeks ago I received an email from a dentist in Washington state. Her story was one I HAD to share.
Hello Eva,
I am a general dentist in WA state. I just came across an article about you in our state dental association magazine. Reading what happened to you gave me the chills. My mother had a very similar bout with tongue cancer in 2010. My husband and father are both physicians and I am a dentist. I would like to tell you her story and how the medical and dental professions as a whole failed to take the non-healing lesion on my own mother’s tongue seriously.
This should NOT be ignored
My mother was told she was biting her tongue at night. I sent her to multiple ENT specialists, oral surgeons and her regular DDS as I did not live in same state. I assumed they knew more than I did as I was fresh out of dental school (2005). They showed little concern for the lesion. I noticed the lesion in the fall of 2005 and accompanied her to the ENT for a biopsy which like you, was negative. I knew deep down this could be serious so had her return for follow-up visits multiple times.
There was a complete disinterest and lack of concern from this otolaryngologist. I thought she was in the hands of the super-specialist in this field which trumps the oral surgeon and trumps my general dentistry knowledge. I did send her to other specialists as well. In 2010 my mother had a hemiglossectomy, neck dissection, and radiation. She had squamous cell carcinoma which had traveled into her lymph nodes.
I graduated from dental school in 2005 and religously do oral cancer screenings on all my patients. The amount of guilt, sadness, and rergret I harbor for failing to spare my mother from that horrible experience is always with me. She is now doing well. I was by her side throughout all of her treatment but even having been formally educated in the field could not have prepared me for what her treatment entailed. It was an eye-opening heinous ordeal. She is doing well and has been having check-ups and surveillance at the University of Washington every three months since treatment. She lives up in Alaska. If you would like to talk more please feel free to email or call me anytime. THANK YOU for helping get the word out regarding this disease.
Comments 6
Hello Dear,
I just came to know about my father being diagnosed with mucosa keratinized scc just a week back,and the radiation and chemotherapy has started. i would like to know what are the survival chances as he is in stage 3 and is aged 62.he’s very strong will-powered.pls help me if u know of any supplement nutrional product that can be given along wid the treatment,as the doctos don’t prescribe them (i am from india) .
thanx a lot iadvance, any help is highly appreciated.
Author
Dear Smita,
If the SCC is HPV+ (mostly base of tongue back of throat, tonsil) then his survival is very good. If the SCC was lateral tongue or some other area of the mouth, the response to treatment isn’t quite as high, but far from hopeless. Radiation is devastating but saves lives. The chemo’s effectiveness is still questionable. If your Dad has a bad reaction to the chemo (rash), you can opt to stop it.
There is really nothing to help the mucositis. The blistering is really difficult to endure, however, lots of survivors do it. Just be sure he eats plenty of nourishing food like Whipped sweet potato, pureed spinach, scrambled eggs….he needs to continue eating to boost his immune system. The supplements (ensure…) is not what I think is great for the vitamins and minerals.
Keep in touch and let me know if you have any other questions. Be sure to check out SixStepscreening.org/newlydiagnosed
Eva
I have had painful sores on my tongue for over a year and my mouths started over producing saliva 18 mos ago. I seen multiple doctors, surgeons, dentists, dermatologists, ENT’s…others maybe…had a tongue biopsy which included a large sore…then sore came back bigger than it was. I have leukoplakia all around my mouth and tongue…..I’m headed to the Mayo Clinic to see a dermatologist, this Saturday, Nov 2, 2013. The picture here is the only one I’ve found that looks like what I have.
Any ideas for me?
Author
Terri, I don’t see the photo. Please send to eva@sixstepscreening.org. We can continue our conversation there. I show a slide in my presentation of leukoplakia that turned to cancer, so it’s great that you are continuing to pursue an answer. I’m sorry to tell you that I don’t think a dermatologist is the way to go. You need to see an oral surgeon. Even better, try to see an oral medicine specialist. Visit AAOM.com to find someone near you. Is there any red coloration mixed in the white? That would be an important change to mention to the doctor.
Hi,
I have swelling below my tongue and small bump along with a red swelling area with white patches I have pcp appointment on Wednesday.
What questions should I ask?
Author
Take a photo of the abnormal area so you have a record. You will probably be referred to an oral surgeon who will do a biopsy. By the time you get that appointment, you will have a photo to compare. If your pcp can take a pic for you, go for it. Lesions in the mouth should heal within 14 days. If not, the only way to know what it is, is a biopsy. Write down all the details you remember: How it feels, when it hurts, when you noticed it, how it has changed. Also, call your dentist to see if in their records they noted anything about the tissue being a little different in texture, color… Lastly, when you get the biopsy, request an oral pathologist (vs general pathologist) to read it. Let me know if you have any other questions. Good luck and keep in touch with me.