Heidi found a spot on her tongue in 2019 and 3 months later learned she was pregnant. The spot improved and worsened. a couple of months later at her dental cleaning, she mentioned the spot and her dentist said, ‘You are young, never smoked, and it’s probably related to stress from pregnancy and Covid.’ Sound familiar??? To me, yes! Six months later at her next dental appointment, the dentist was still not concerned about the spot on her tongue which had not healed. Classic. Because she had no risk factors, her dental professionals ASSUMED it was nothing. How many of these stories do you need to hear before you RULE OUT ORAL CANCER then treat with the ‘wait and watch’ while using rinses, gels, and blaming it on stress and hormones.
A year and a half later, she demanded her dentist take a thorough look at the non-healing sore. What does it take for healthcare professionals to take abnormalities seriously? We know our bodies better than anyone and no one will advocate for our health like we can ourselves. To placate her anxiety, the dentist ordered a biopsy not feeling a sense of alarm. Again, sound familiar? For me, YES!
Heidi was diagnosed with aggressive squamous cell carcinoma of the tongue at the age of 32 with a 5 month old baby. On top of that, she had to have a second surgery shortly after the first. Why? The surgeon excises the whole tumor along with extra tissue all around in hopes to remove any cancer cells outside of the tumor. The amount of tissue excised is based on a visual judgement, an educated guess. After surgery, a pathologist confirms whether enough tissue was removed, or not. Unfortunately for Heidi, and for so many others, a second surgery must be endured. Why can’t the tissue be read by an oral pathologist during surgery? Sometimes this happens in big cancer centers, but it is not common. It is certainly not what is best for the patient, or the insurance company. It’s best for the facility. Who is most important here?This week, Heidi completed a maximum dose of radiation. She still wants answers: Why does this horrible disease happen to young people with no risk factors? The answer is that only 54K Americans are diagnosed with this disease each year, and that includes all the smokers/drinkers. So the number of those with no risk factors are quite small and doesn’t motivate any big donations for answers. It will be an uphill battle until more celebrities get this disease. Right now, a partial list includes Val Kilmer, Michael Douglas, Gwyneth Paltrow’s dad, Dustin Hoffman, Jim Kelly, Jamie Dimon (CEO of Morgan Stanley), Stanley Tucci…. and the list will continue to grow as HPV is on an epidemic rise.
Heidi, may you be as lucky as I have been with minimal long term effects of treatment. May we soon have some answers to why this disease happens to young healthy people. May your son have you in his life for a very long time, in the best possible health.
Go to the Six-Step Screening Facebook page to see the video of a stranger who hears Heidi’s story and wants to send her a Christmas gift!
Pictures of the lesion would be most helpful for all of us to see & hopefully recognize if need be.
I will try to post more photos, but one thing I have learned is that no one picture tells the whole story. Patient medical history, how long it has been present, and how it feels are also important factors to consider. If you want to see lots of clinical photos, follow Dr. Ashleigh Broidy on Instagram @central_ohio_oral_pathology. She explains her thought process through diagnosis. Also, follow @LSUoralpathology (Dr. Katrina Cordell).