For some cancer survivors, eating and drinking can become difficult, if not impossible, after treatment.
Exercise has always been part of Scott Wieskamp’s life. But after cancer treatment, the longtime runner and marathoner added a new element to his training regimen — exercises to strengthen and maintain his swallowing muscles.
"Every day while I’m driving to work, I open my mouth like I’m yawning to stretch all my facial muscles as much as I can,” says Wieskamp, 62, who lives just outside Lincoln, Nebraska. “I take my tongue and put it under the back of my lower teeth and push as hard as I can to exercise my tongue muscles. There’s about half a dozen things I do for a few minutes every day.”
Four years ago, Wieskamp was treated for oral cancer caused by the human papillomavirus. The aggressive treatment, which included 39 radiation sessions and several doses of the chemotherapy drug cisplatin, knocked out the cancer. But it also left Wieskamp unable to eat, and he lost 15 pounds in a matter of weeks.
“As you get radiation in the neck and throat area, it becomes painful to swallow,” he says. “I quit doing all that. I quit eating, quit swallowing — I couldn’t even drink.”
Because he was unable to get adequate nutrition, his doctors inserted a feeding tube so Wieskamp wouldn’t have to swallow. The tube stayed in place throughout his two months of treatment and for about a month after, he says.
Although his nutrition improved, Wieskamp says he was left with another problem: His muscles “forgot” how to swallow.
“I had to go to a speech-language pathologist to help me learn how to swallow again,” he says. “It was scary, painful and frustrating.”
Wieskamp’s swallowing challenges aren’t uncommon. After treatment, survivors of cancer may experience not only difficulty swallowing but also dry mouth and changes in taste, smell, digestion or bowel habits. Any of these changes can make eating and drinking a struggle, which then makes it difficult to get adequate nourishment.
When you’re not getting the nutrients you need, it’s hard for the body to regain strength and rebuild cells, according to Rachel Wong, an oncology dietitian at the Georgetown Lombardi Comprehensive Cancer Center at MedStar Georgetown University Hospital in Washington, D.C.
“Patients can experience delayed healing and recovery caused by poor nutrition post treatment” she says. “A rapid decline in weight from inadequate nutrition often results in both fat and muscle loss, causing significant fatigue and weakness, which can greatly impact one’s ability to accomplish tasks and resume a normal way of living.”
“It can be possible that patients find delayed healing and delayed recovery because of poor nutrition post treatment,” she further explains. “If you’ve lost a lot of weight and you’ve lost muscle, you may sleep a lot during the day.”
Eating challenges can also make it tough for survivors of cancer to enjoy time with family and friends, Wieskamp says. After treatment, he didn’t look forward to social occasions like he used to. “People say, ‘Hey, let’s meet for coffee’ or ‘Let’s have family over and we’ll have a meal,’” he says. “Our lives revolve around food.”
Some types of cancer require treatments that are more likely to affect how people eat and drink. According to Dr. David G. Pfister, medical oncologist and chief of the Head and Neck Oncology Service at Memorial Sloan Kettering Cancer Center in New York City, treatments for cancers of the head and neck pose particular challenges because they can affect swallowing, taste and smell.
For example, surgery in certain areas of the head and neck can disrupt structures used in swallowing, such as the throat and tongue. In addition, oral mucositis — mouth pain, sores and infection — can develop after radiation and chemotherapy. Some survivors experience damage or changes to their salivary glands, which can make the mouth exceptionally dry. This can also predispose them to dental problems.
Jean DiNapoli, 62, of Newburgh, New York, says trying to swallow after completing 30 rounds of radiation for oropharyngeal cancer (a type of cancer found in an area of the throat called the oropharynx) was like “swallowing glass.” She also experienced mouth sores and thrush, a yeast infection that develops in the mouth, along with significant dry mouth.
DiNapoli, who is now seven years post treatment, says she lost about 35 pounds immediately following radiation.
“I could have gotten a feeding tube, but I really didn’t want it,” she says. “I didn’t want my muscles to atrophy.”
Pfister says the decision to place a feeding tube is one that doctors make carefully. “Not that long ago, when significant swelling, pain and weight loss were expected, we would prophylactically put in a feeding tube to get patients over the hump, so to speak,” he says. But doctors found that people would soon start taking all their calories through the tube, leading to the exact problem DiNapoli feared — muscle atrophy.
“Your swallowing muscles are like any other muscle. If you don’t use it, you lose it,” Pfister says, adding that it’s critical to make swallowing therapy a routine part of treatment along with good pain control. “We evaluate every patient in an individualized way. (Although) there clearly are settings where we put in a feeding tube, we’re more selective.”
After her treatment ended, DiNapoli worked with a speech pathologist once a week for a couple of months to regain strength in her tongue muscles and improve her ability to swallow. “I did different exercises, such as swallowing with my tongue between my teeth,” she says. “I also had the help of a good nutritionist.”
Registered dietitian nutritionists trained in mitigating the impact of cancer treatments can help survivors find new ways not only to get nourishment but also to enjoy food again. Annette Goldberg, a senior nutritionist at Dana-Farber Cancer Institute in Boston, says choosing the tools to help individuals bring their symptoms under control can be a bit of a puzzle. It depends on factors such as their overall health prior to treatment, the type of cancer and treatment they had, and the social support system they have.
“Sometimes I’ll ask patients if they live alone, and they’ll wonder why I’m asking that question,” she says. “I want to make sure they have the proper support. If you’re not feeling well, you don’t want to do anything.” That includes cooking, she says.
Maureen Gardner, a clinical oncology nutritionist at Florida Cancer Specialists & Research Institute in Tampa, says survivors who’ve had cancers in the gastrointestinal (GI) tract or treatment for any cancer in areas near the GI tract — such as prostate, ovarian or uterine cancer — may experience ongoing effects on how food is digested and eliminated. Some survivors may experience weight gain, such as breast cancer survivors who are on long-term hormone therapies or those who have entered menopause. Other people may experience ongoing diarrhea or dumping syndrome — when food moves too quickly from the stomach to the small intestine — after being treated for GI cancers.
Gardner says dietary changes, both in what and how patients eat, can help manage eating challenges after cancer treatment ends. If you have dry mouth, try to:
• Focus on hydration. In addition to drinking water, Goldberg recommends keeping your mouth clean and avoiding toothpastes and mouthwashes that are too harsh.
• Boost saliva production. Tart foods can stimulate the salivary glands, Goldberg notes. Adding tart lemon juice to water or chewing a strong sugarless mint gum can help.
• Add soft, moist foods to your diet. Wong recommends adding extra sauces or broth or even cream to casserole-type dishes or when having drier foods like meat, potatoes and rice.
“Drinking fluids along with your meals can certainly help improve the moisture content in the mouth and make swallowing easier,” Wong says. “Just having a glass of water, juice or any type of liquid in between each bite can really help get the food down.”
DiNapoli says she drank lots of water to relieve her dry mouth. She also tried different lozenges, mouthwashes and gels. “I still use XyliMelts,” she says. “I put (one) in my mouth at night and it slowly dissolves.”
Some survivors experience changes in taste and smell that affect the way they experience food. “I lost my sense of taste right after radiation,” DiNapoli says. “Everything tasted like paste. But then my sense of taste came back so strong that spicy food was overly spicy. And my sense of smell is stronger.”
“I tell patients that your taste buds and smell will constantly change,” Wong says, encouraging people to keep a running list of things that work well and things that don’t. “In my experience, a list of what works gives you the motivation to keep trying new things.”
If you’ve had changes in taste and smell that affect how you experience food, try experimenting with seasonings. Adding spices such as basil, pepper or dill can make food more sweet, savory or salty and improve its flavor. Wong also recommends adding different types of sauces, such as ranch, barbecue, or sweet and sour to help bring out the flavor in foods and add some moisture.
If you’re experiencing ongoing GI symptoms such as diarrhea, Goldberg recommends talking to your doctor or nutritionist about supplements that might help, such as banana flakes. “It’s a product that’s made from dehydrated bananas, which contain several soluble fibers including pectin. The soluble fiber absorbs fluid to help firm the stool,” she says. “A combination of foods, maybe some supplements and working with your care team can help.”
Although eating and drinking can be difficult during active treatment and the weeks immediately after, strengthening exercises and dietary changes can help most people overcome these challenges with time. Addressing issues right from the start can help the healing process, Wong says.
“Getting guidance from a dietitian can impact how patients recover after their treatment,” she says, adding that it’s important for doctors to talk with patients about challenges they might experience. She also recommends resources such as the American Institute for Cancer Research and the American Cancer Society for advice on managing eating challenges after treatment.
Support groups — both online and in person — can also help. DiNapoli and Wieskamp are members of an organization called Support for People with Oral and Head and Neck Cancer (SPOHNC). Both say SPOHNC has been incredibly helpful as they’ve healed.
“I would tell most people that I’m 100% normal, but I’m not 100% the same,” Wieskamp says. “My brain has had to learn that things that used to taste one way taste a little different today. But I’m only one person. You could probably interview 20 people and they may have
20 different answers.”
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