Oral Cancer Survivor Speaks Out for Awareness Month


April is Oral Cancer Awareness month and here at Diabetes Daily, we would like to shed light on this disease that affects 132 new people a day and kills one person every hour of every day. Historically, oral cancers have been known to be caused by drinking and smoking and in people over 50, however, it has been occurring in younger, non-smoking people due to HPV16, the virus most commonly associated with cervical cancer.

It is so important to raise public awareness for a much less talked about cancer and also to discuss the importance of early detection. There is no time like Oral Cancer Awareness month to schedule your free screening. For a list of dental professionals who are participating in this year’s event by offering free oral cancer screenings, visit the Oral Cancer Foundation’s website. Once the COVID-19 pandemic regresses and you feel comfortable, I strongly encourage you to schedule an appointment.

I thought since many of us live not only with diabetes, but other illnesses or conditions, that it would be nice to hear from someone who manages her diabetes while kicking cancer in the butt!

Photo credit: Dr. Sarah Jones

Sarah, thank you so much for taking the time to speak with me. At what age were you diagnosed with type 1 diabetes (T1D)?

I was six years old when I was diagnosed, in March of 1983.

How did you handle it at such a young age? What about your family?

My family was very supportive, and because my father had T1D (and was a physician), he was adamant that I become involved in my own care immediately. They were just coming out with blood glucose meters at that time, so I was an early “guinea pig” in those types of systems as well.

At what age did you start taking over ownership of your diabetes management?

Right away. I still remember learning to give myself shots at that young age, and my parents standing there, with my mom crying, but making sure I did it myself. I am so grateful they did that!

What do you do for a living? Did diabetes play into your decision to be a clinical psychologist?

I am a clinical psychologist working with children and adolescents. I do not know that type 1 played a big role in my decision, other than trying to prove I could do whatever I wanted despite the challenges it brought me.

Photo credit: Dr. Sarah Jones

How exactly were you diagnosed with oral cancer? Did you find something or was it during a routine check-up?

I have an additional autoimmune condition called oral lichen planus. When a section on my tongue did not get better over time, like it typically did, I knew something was wrong. I went to see my dentist, then an oral surgeon. It took two days to confirm from a biopsy that it was squamous cell carcinoma. I was diagnosed in May of 2018.

What happened next? Did you start treatment right away? If so, what?

Things happened quite quickly. My husband decided he wanted to go to M.D. Anderson, which I am so happy we did because we found out soon afterward that my cancer had already spread to my lymph nodes. I had part of my tongue removed in June and then another surgery to remove all of my lymph nodes on the left side of my neck about a month later. Radiation started in August that year and lasted for 6 weeks.

How did you feel physically during this time, did it make managing your blood sugars more challenging?

Radiation was probably the hardest time period I have ever experienced, especially with my blood sugars. I was extremely tired and had to have a feeding tube inserted, so eating was a challenge. I had to work very carefully with a nutritionist to make sure we could keep my glucose levels as well as my weight up.

As an oral cancer survivor, you know how important early detection is. What would you tell people to look for?

Any time you have a sore in your mouth that does not heal quickly, go see your dentist immediately. That is the number one thing. If I had not waited even the couple of months that I did I could have avoided my second surgery and radiation therapy.

Photo credit: Dr. Sarah Jones

I can’t imagine going through cancer treatment and dealing with diabetes, how did you manage to get through it all emotionally? What do you do for your own self-care?

Emotionally it was quite hard, I won’t lie. Even as a psychologist, I had some bad days, I still do thanks to the lasting repercussions of the radiation. But, my four children and my husband are why I agreed to fight and why I continue to, every day. I have strong faith, good friends, and love to watch mindless TV, so that helps, too!

Being that you already live with a serious condition, did that make it any easier to accept and take on your new diagnosis?

I think to a degree, yes. But the issue for me was that I had learned to know that I could live with my diabetes…and cancer was trying to kill me. It was a different fight, but diabetes had made me a better fighter.

Sarah, if you could tell the world one thing about oral cancer and how it’s impacted your life, what would you tell them?

That it’s going to take a whole lot more than that to take me down!

Thank you for taking the time to talk to me, Sarah! Stay well and healthy!

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