Tongue Cancer Survivor

Share your experience

Day care provider Sue Affolter found it very therapeutic to talk with others during her battle with metastatic tongue cancer.

My life is hectic! I’ve been a day care provider for almost 25 years, and the children I care for definitely keep me on my toes. My husband and I also have two children of our own – now ages 23 and 26 – so my hands are always full.

Eight years ago, I was thrown a new ball to juggle. I went to the dentist to have two teeth removed. The procedure went well and everything was fine until I found a lump on my neck three weeks later. I went to my primary-care doctor who suspected an infection and prescribed antibiotics. When it didn’t go away, I was referred to an ear, nose and throat doctor. After some tests, I was diagnosed with Stage IV metastatic head and neck squamous cell carcinoma.

I was shocked and numb, and I wasn’t sure how I was going to tell our children. They were both in high school at the time—my daughter was a freshman and my son was a senior. At that point, I wasn’t sure whether I would see them graduate, let alone get married. I knew my children needed to know, however. And even though telling them was difficult, I would never suggest to anyone to keep their cancer private. Throughout my entire experience, I found it very therapeutic to talk about what I was going through and keep a journal about my experiences. I even helped start a support group in my area, which was – and still is – very helpful for me and others.

After my diagnosis, I needed to decide on a treatment plan. I had full confidence in my health care team, so when they told me that surgery followed by a combination of radiation and chemotherapy was my best option, I agreed. At the time of my surgery, the tumor was the size of a tennis ball. The surgeon removed the tumor as well as part of my tongue and some nearby lymph nodes. I then had 56 days to recover from that surgery before having one more surgery to install a port and a feeding tube. I had three rounds of chemotherapy with the drug cisplatin (Platinol) and 30 radiation treatments with three booster radiation treatments.

My body responded very well to treatment, and my feeding tube was removed after about five months. But the entire process was both physically and emotionally hard at times. During treatment, my short-term side effects included nausea, fatigue, low blood counts and a metallic taste in my mouth. My lingering side effects include hair loss toward the back of my head near my neck, a decreased sense of taste, dry mouth and some hearing loss. It is still difficult for me to eat some foods due to my tongue surgery and lack of saliva, but I have learned to take smaller bites and to wash them down with plenty of liquid. Thankfully, all of my numerous follow-up tests have returned positive results.

While cancer will be on my radar for the rest of my life, I will not let it consume my life. The road wasn’t easy in the beginning, but it got smoother and I learned a lot along the way. I learned that I can speak in front of a crowd, and that I am a strong person willing to fight for myself and help others. I believe in the power of prayer now more than ever, and my faith is stronger than it has ever been.

I encourage you to stay strong and positive, and to never give up.

Attitude is everything.