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Social Worker Shares Story about Tongue Cancer

Read Time: 5 minutes

Caution: This story contains tongue cancer pictures, before and after surgery. Please use your best judgment.

Digital illustration of an open mouth with a sore on the side of the tongue

Karen Jensen has dedicated her life to helping others. A social worker for more than two decades, she previously worked at Huntsman Cancer Institute, providing support and counseling for patients adjusting to a diagnosis.

“Working with families, you encounter people with anxiety and others suffering from depression. Social workers try to meet their basic needs—any way we can help be an advocate,” Karen says.

Karen’s decision to become a social worker was solidified when her father was diagnosed with Hodgkin lymphoma in 2000. “The hospital social worker and chaplain helped my husband and me move our wedding up so my dad would be a part of it. After this experience, I knew I wanted to be in medical social work. It was so profound that the two of them and the hospital staff were able to take this challenging time in our lives and intersperse it with some joy.”

In August 2021, Karen’s connection with cancer took another turn when she noticed a bump on the side of her tongue. “I thought I bit it and it just never went away,” she says

Karen's tongue cancer bump before surgery
Karen's tongue cancer bump before surgery

During a doctor’s visit a month later, Karen mentioned the bump to her primary care doctor. She was immediately sent to an ear, nose, and throat specialist. “I saw Marie Bergomi, FNP, BC, and she said we needed to do a biopsy. I had it that afternoon. Everything came out of left field.”

The biopsy revealed squamous cell carcinoma. Squamous cells are thin, flat cells found in the tissue that forms the surface of the skin and the lining of hollow organs and respiratory and digestive tracts. Most cancers of the head and neck are squamous cell carcinomas.

“I knew about the Huntsman Cancer Institute environment from working here. It is a collaborative setting where each team supports each other—a very welcoming and genuine place. So even though it was terrifying to think something was growing in my throat or mouth, I was lucky because I was around the right people. We are in certain places at certain times for a reason.”

Karen had scans done of the inside of her mouth and the doctors covered every scenario. “They took the time to make sure I was comfortable.” Radiology called and said they were ahead of schedule and could get Karen in for a PET scan.Richard Cannon, MD, told me the type of surgery he anticipated doing. He and his nurse, Tina Dunn, were on top of it, reassuring, answering all my questions.”

Karen after tongue cancer surgery and neck dissection
Karen after tongue cancer surgery and neck dissection

Karen was scheduled for a few procedures. First, a neck dissection, where lymph nodes would be removed and tested for cancer. Then, a partial glossectomy to remove the cancerous tissue on her tongue. Finally, the possibility of reconstruction called a free flap of her tongue might have to occur. This would include taking skin and fat tissue, as well as veins and arteries, from the radial part of her forearm, used to create a new tongue.

“Oral cavity cancer is one of the most common things we see,” Dr. Cannon says. “Luckily, hers was small and had not spread. Being at a cancer specialty hospital, we often see people who are further along and have been referred by someone because we have the resources to handle these types of surgeries. Chemotherapies are not as effective for oral cancers, so typically patients follow up with us to ensure nothing comes back."

“Things moved so quickly,” Karen adds. “I didn’t have time to be worried or scared about cancer or the procedures. There was no sitting around and waiting. I can’t imagine how much anxiety others must feel between the time of diagnosis and surgery.”

Fortunately, the surgery went well. Only a small portion of Karen’s tongue was removed and the lymph node biopsy came back negative, meaning the cancer had not spread. Three months passed. Another clean scan. She will continue to have scans regularly.

Karen's stitches after her glossectomy
Karen's stitches after her glossectomy

“Karen is an amazing person,” Dr. Cannon says. “I knew her before the surgery because she shared an office space at Huntsman Cancer Institute with our former social worker. She has this bubbly personality. You never want one of your friends to have to go through something like this.”

Karen was concerned about her ability to talk after surgery, but the doctors encouraged her to speak right away. “I was discharged after a day or two and only out of work for a month,” she says. “I just rested. I didn’t need a trach, a feeding tube, anything.”

The first week home from the hospital, Karen’s diet consisted of soft and mushy foods. “There were a lot of cream soups and purees, Greek yogurt, then I moved up to mashed potatoes and scrambled eggs. Luckily, my husband is a good cook.”

Speaking of her husband, Karen credits him for his incredible support. “We were high school sweethearts and have been married for more than 20 years, so he knows me well. He said, ‘Pump the brakes, wait for the doctor,’ when I was terrified at the beginning. My daughter needs her mom. I’ll be damned if wasn’t going to be there for her.”

Due to residual numbness, Karen continues to do tongue exercises and swallow rehab. “Care has been outstanding. The hospital staff is great at making sure I am comfortable, drinking enough fluids, not in pain.”

When asked about what she would like to share with others, Karen recommends getting checked if there is something that concerns you. “It’s better to have someone look at it. Don’t let it become a major problem.”

“Anything that lingers for two to three weeks, should get checked,” Dr. Cannon says. “If you have a sore, growth, mass, lesion, anything bothering you, then speak up. Go to either your dentist or doctor and get it looked at.”

Oral cancers affect nearly 53,000 Americans each year, but Karen feels this is still a cancer type not often talked about. There are no national standards for oral cancer screening, unlike breast, colon, and skin cancer. “If my story gets one person to find oral cancer early, then this hasn’t been for nothing. That’s part of being a social worker. I just want to help others.”

Cancer touches all of us.