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Lewis’ Story: Throat Cancer Changed His World

Posted on by DCPC

Photo of Lewis and his dogLewis was a busy man. He and his wife, Amy, were running an aerobic exercise group in their community and also volunteering throughout the north Florida area. On a hot and dry day in June 2011, when the air was filled with smoke from nearby wildfires, Lewis came home from tennis coughing and clearing his throat. He also had sores in his mouth, so he decided to go to his doctor.

“The doctor looked at my tonsil and told me, ‘That’s either the worst case of tonsillitis I’ve ever seen in an adult…or it’s something else,’” Lewis says. The doctor recommended more testing. The next day, after the tests, Lewis was told that it was a malignant (cancerous) tumor.

“When you hear the word ‘cancer,’ your world changes in an instant,” says Lewis.

More testing showed that it was an advanced stage of cancer—Stage IV—and to have surgery on it would require breaking his jaw bone and taking out a lot of tissue, permanently changing his appearance and ability to swallow and eat. Oncologists told him that there was just as good a chance that the tumor would shrink with radiation and chemotherapy as it would with surgery. Lewis had seven chemotherapy treatments and 35 radiation treatments over the course of the next seven weeks. By the end of treatment, he could no longer swallow and had to use a feeding tube. But the tumor had shrunk to the point that doctors could no longer detect cancer.

Out of a sense of gratitude for all the help they got, Lewis and Amy decided to start a support group for people with head and neck cancers. They contacted a national organization and got the materials to start a chapter where they live. Lewis and Amy handed out flyers to local doctors’ offices and hospitals. At the first meeting, six people showed up—including some they already knew but had no idea were dealing with head and neck cancer. Now, meeting attendance ranges from 25 to 45 people.

Then, in December of 2015, Lewis found a sore on his tongue that wouldn’t go away, even with steroid treatment. His oncologist did a biopsy, and found another tumor. He was scheduled for surgery right away, because he was told that he was not a good candidate for more radiation, as he had very high doses during the last round four years ago. Additional oncologists who reviewed his case thought he might lose his tongue and part of his jaw. But a biopsy after surgery showed that there were no cancer cells remaining on his tongue.

“I still have a high risk of the cancer coming back, but I’m still going to live my life,” Lewis says.

He recommends that people who are diagnosed with a head or neck cancer should listen to their doctors very closely—and carry a notebook to write down details about treatment. He and Amy also say that support groups help both the person diagnosed and the caregiver.

Smoking and alcohol use are major risk factors for head and neck cancers. Learn more about the causes of head and neck cancer, cancer survivorship, and quitting smoking.

Posted on by DCPCTags

3 comments on “Lewis’ Story: Throat Cancer Changed His World”

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    Well I stopped all alcohol and tobacco use in 1976, so I though that I was safe. I started having bad head aches, than my neck and throat started to hurt and than it was my right jaw and one tooth all over about 3-4 months. The VA sent me to a neurologist, after a 4 day stay in the hospital for pain, after seeing him, I was referred to a ENT in the community. It took the doctor ther 2 minutes to give me a primary dignosis of aggressive throat cancer, that appeared to have already entered the bone. He scheduled me for a biopsy next week. No complete diagnosis yet, but I hope soon.

    Well I stopped all alcohol and tobacco use in 1976, so I though that I was safe. I started having bad head aches, than my neck and throat started to hurt and than it was my right jaw and one tooth all over about 3-4 months. The VA sent me to a neurologist, after a 4 day stay in the hospital for pain, after seeing him, I was referred to a ENT in the community. It took the doctor ther 2 minutes to give me a primary dignosis of aggressive throat cancer, that appeared to have already entered the bone. He scheduled me for a biopsy next week. No complete diagnosis yet, but I hope soon.

    My name is Kevin, I started having ear aches. After seeing my Dr and being referred to ENT at the VA hospital, I was diagnosed with Ananoid Cystic Carcinoma in the tongue. A rare form of cancer that effects about 1200 people a year. The standard treatment is removal of the cancer surgically and radiation treatment. I went in for the initial operation and after anesthesia during the insertion of the feeding tube I Suffered a rare heart condition called LQTS, where your heart stops receiving signals to contract. For 25 minutes I received CPR and was hit with the shock pads 5 times. Moments before the Dr was about to open my chest and manually pump my heart, my heart beat returned. The surgery was postponed until a pacemaker/defibulator could be installed three weeks later. A short time thereafter I went back into the surgery room again to get the initial operation performed which was a success. This involved breaking my jaw removing the cancer and grafting a piece of skin from my arm to my tongue where the cancer was at. The cancer had been removed successfully according to my scans. After healing up I received 33 radiation treatments to my tongue area and where my spine meets my brain. I suffer some side affects from the radiation like lack of taste and over active salivary glands but I am alive. I was asked if I saw anything when I was gone as I was being transported to ICU. Initially, I said no because I never witnessed a light or saw passed loved ones and I assumed that is what I was being asked, but what I did have was a brief vision of a slanted horizon with outlined figures piled on top of one another below the horizon and pitch black above. It lasted maybe two seconds. Take it for what it is, that is what I saw. It’s been an interesting year of recovery and treatment to say the least. Life goes on and I’m content with having tomorrow, Lord willing. My Dr’s and nurses, assistants and family have all been there for me. I am thankful to have them. The night before the surgery after rushing to complete my tasks on my rural homestead I carved a small wooden cross out of scrap 2×4 and taped it to my hand during my operation. I carry it with me to this day. I try to be a better person and never leave a loved one on a bad note.

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