New laryngectomy support group provides tips, community and hope

May 27, 2016 | by City of Hope

Cancer patients can use as much support as possible before, during and after treatment, as cancer inevitably takes a tremendous physical and mental toll on a survivor. While the presence of family and friends is critical, spending time with those who have gone through similar pains, procedures and experiences can provide a special kind of comfort.

That’s why City of Hope is so invested in creating a network of support groups for its patients.

In April, City of Hope started a support group for those who have undergone a laryngectomy, a procedure typically used to treat laryngeal or hypopharyngeal cancer (it can be used to treat other head and neck cancers, as well.) The procedure has a dramatic effect on the patient, since it involves the removal of part or all of the larynx, or voice box, which houses the vocal cords.

“A laryngectomy is truly a life-altering surgery,” said City of Hope speech-language pathologist Kelly Hansen, M.S., CCC-SLP, who runs the group. “It significantly impacts our basic human needs — breathing, eating, drinking and talking, not to discount the changes in appearance, as well.”

Since a laryngectomy requires the separation of the mouth, nose and esophagus from the airway, patients experience permanent changes in their breathing, swallowing and speech. The procedure creates a hole in the neck — called a stoma — that serves as the patients’ new airway.

“It takes time to learn to adapt to this change in terms of breathing, coughing, caring for the airway and appearance,” said Hansen. “In conjunction with the head and neck surgeons, our team of speech pathologists works closely with these patients after surgery to find a new way to communicate and use their voice, learning to care for the stoma and protect their airway, and to account for differences in swallow function.”

The effort to learn new ways of speaking (sometimes using a tracheo-esophageal puncture or electrolarynx) and adjust to hearing a new voice can have a physical, emotional and/or psychological impact on patients. There may also be dietary, dental and sexual changes or other side effects, plus ongoing medical care, especially in the first year following initial treatment.

Those who have already successfully made these life adjustments can be uniquely helpful. Since there are only about 60,000 people in the U.S. who have had a laryngectomy, new patients aren’t likely to run into others that have undergone the surgery in their everyday lives. “As a result, it’s important to provide our laryngectomy patients a forum to develop a community,” said Hansen,  “to share tips, tricks and experiences, successes and frustrations. Our rehab team can offer many tips to improve quality of life and function after surgery, but we are no replacement for learning from other people who have a shared experience.”

City of Hope’s Laryngectomee Support Group is currently a pilot program that meets quarterly, with the next gathering scheduled for July 19 from 12 to 1 p.m. in Conference Room Y9 at City of Hope in Duarte, California. All City of Hope patients, their families, friends and caregivers, are invited to attend. (City of Hope also runs a Head and Neck Support Group for head and neck cancer patients, families and caregivers.)

“What’s most beneficial is the sense of community, and for patients who are new to the laryngectomy community, hope,” said Hansen. “To see that while life will never be the same, in time our laryngectomy patients do find their new voice, enjoy eating and drinking, return to work and even travel the world.”

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Visit Living with Cancer for more information on our support groups. You can also find other tips, tools and resources for patients, families and caregivers. If you are looking for a second opinion or consultation about your treatment, request an appointment online or contact us at 800-826-HOPE. Please visit Making Your First Appointment for more information.

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