Treatment of Squamous Cell Carcinoma of the Tongue

When my husband was diagnosed with squamous cell carcinoma of the tongue, we were stunned. That little white bump on Jim’s tongue had been there for months. It didn’t hurt or feel any different from the rest of his tongue, it was just there. How could something like that be cancer? But when the doctor said “cancer” it seemed like the end of the world for us. This is the story of Jim’s treatment for squamous cell carcinoma of the tongue.

The tumor was discovered by the dentist when Jim went to have his teeth cleaned. The dentist wouldn’t do anything that day. He advised my husband to go to an oral surgeon immediately. Jim did as he was told, and soon was ushered in to the examination room of the Oral Surgeon (OS).

The OS did a biopsy of the tumor. In other words, he cut off a section of Jim’s tongue to look at more closely under a microscope. The OS determined the size of the tumor, whether or not it was well differentiated, and whether the mass was malignant or non-malignant. A few days later, we received the results of the biopsy in the OS office. We were told that it was a well-differentiated malignant tumor four centimeters in diameter. We also learned that it was in the first stages of development. The OS referred us to an oncologist for further treatment.

Walking into the oncologist’s waiting room was a frightening experience for us. However, the oncologist did everything she could to set us at ease. She explained what the different aspects of Jim’s tumor meant, and what treatment options we had available to us. She recommended surgery to remove the tumor, followed by radiation treatments to the mouth and throat. She spent a lot of time with us answering all of our questions, and even gave us her home phone number in case we had questions later.

Surgery was done by an Ear, Nose, and Throat Specialist (ENT). The ENT explained that he would remove the tumor and part of Jim’s tongue, and look at the tissue removed under a microscope to determine if all of the cancerous tissue was removed before Jim left the operating room. They would keep removing tissue until no cancerous cells could be seen. After the surgery was over, Jim had lost about half of his tongue, the salivary glands on one side of his mouth, and seventeen lymph nodes in his neck. The incision went from just below his ear to the center of his chin. He looked like Frankenstein, but the cancer was removed.

The next step was to have all his teeth removed. The OS told us that radiation treatments could damage teeth that were not in perfect condition. We found out later that the real reason this was done was because radiation to the mouth can cause necropsy of the jawbone-in other words, the jawbone is killed by the radiation. If you have to have a tooth extracted after the jawbone dies, it can cause a fracture that will not heal. The procedure took three visits to the OS. On the first visit, the doctor did an evaluation to help him decide how to proceed with the removal of the teeth. On the two subsequent visits, all of the top teeth and then all of the bottom teeth were extracted. Jim was then ready to begin radiation therapy.

The Radiation Therapist (RT) looked over Jim’s medical records, then examined the area to be radiated. He prescribed a series of thirty-seven radiation treatments over a period of six weeks. He explained that with the radiation treatments, the cancer had a “zero in 100” chance of returning. Without the treatments, it had a “1 in 100” chance of returning. He told us that “zero in 100” does not mean that the cancer will not return in all cases, just that it has less than “1 in 100” chance of return. We decided to go ahead with the treatments.

On the second visit to the RT, they constructed a mask of Jim’s head out of plastic. He said they draped the plastic material over his face, then heated it with a hair dryer until it was pliable enough to form to his face. They cut holes in the nose area for his nostrils so he would be able to breath when he was wearing the mask. After the mask was shaped, they applied pieces of lead material to the areas that were not to be radiated. The mask would be marked to indicate the areas to be radiated. Jim was told that on each visit for radiation, he would lie on the table, put on the mask, and the mask would be fastened with straps and buckles to the table so that he would not be able to move his head. This would ensure that the radiation would hit the targeted areas. The RT suggested to Jim that he get a feeding tube, or PEG, inserted into his abdomen, but he refused.

The RT explained that healthy cells are strong and can recover from the damage inflicted by the radiation, but cancerous cells cannot. That is why radiation treatment is effective in treating cancer. The radiation burns all the cells in the area it hits, not just potentially cancerous ones. As the weeks went by, the treatment got worse. Jim went from painkiller in tablet form to liquid morphine. His mouth and throat were so inflamed he could not eat. I made milkshakes in the blender using ice cream, frozen fruit, and instant breakfast, trying everything I could to get calories and nutrition to his body. He lost almost a hundred pounds during the six weeks of radiation therapy.

By the last treatment, Jim was so malnourished he could barely stand up. He was starving before my eyes. I called to the RT’s Certified Nurse Assistant, who advised me to bring him to the hospital for IV fluids. He went to the hospital on as an outpatient three times for IVs before he was finally able to eat something.

The recovery from the radiation treatments took almost a year. The cancer was gone, but so were Jim’s taste buds, his salivary glands, his teeth, half of his tongue, and his appetite. He said everything tasted like cardboard. The loss of the salivary glands caused his mouth to be constantly dry. When his mouth and gums were recovered enough, he had a set of dentures made. After several months, his taste buds returned. Not all at once, but over a period of time he was able to taste foods again. He slowly regained the weight he had lost, and started feeling better.

Six years later, Jim still has no saliva. Last year, his thyroid gland died as a result of the radiation treatments to his neck. He has no beard except for a small circle on his chin. However, he is cancer free. Would we go through all of this again? Yes. For us, it was worth it.

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