Treating the Whole Person

Many cancer centers throughout the country are providing patients with more than conventional medicine, striving to treat the “whole person” and not just the disease. For example, according to the National Center for Complementary and Integrative Health, more than a third of all cancer patients in this country use complementary therapies, such as massage or aromatherapy. “Complementary care has a huge impact on patients’ lives, largely through increasing their resilience and their ability to withstand the rigors of cancer treatment,” said Eleanor Anderson, MD, of Psychiatry. “When facing multiple doctor’s visits, tests, and treatments, patients can understandably get quite anxious, and it’s vital that they receive tools for stress relief.”

Other programs, such as support groups, address a patient’s psychosocial and emotional needs, providing a “safe” harbor to express feelings and let patients know that they’re not alone. Still others focus on educating patients in how to feel their best during treatment and after it’s completed.

Throughout Penn Medicine, patients battling cancer have access to a variety of these programs — from Pennsylvania Hospital’s cooking class to the men’s support group at Penn Presbyterian. Read below to learn some of the many ways our hospitals are ensuring that cancer patients — and their caregivers — receive the support they need.

Kicking It Up a Notch

Healthy eating is an important component of cancer care. According to the National Cancer Institute, eating the right kinds of foods before, during, and after cancer treatment can help the patient feel better and stay stronger.

While many cancer support programs disseminate information through consults, lectures and handouts, the Abramson Cancer Center at Pennsylvania Hospital offers a more unusual approach – a cooking class. Á la many of today’s TV chefs, Debra DeMille, MS, RD, CSO, nutrition counselor – working with Abby Wetzel, MS, RD – whips up recipes on a preparation table with an overview mirror so participants can see every step… and sample the outcomes!

DeMille has a binder filled with every recipe used over the past 10+ years. “I’ve only repeated four recipes!” she said, smiling. Recent recipes include more whole grains and vegetables than in the past, as well as “current wave” ingredients like quinoa and riced cauliflower. As DeMille works, she’ll explain why she chooses the food, for example, “asparagus has anti-inflammatory and antioxidant properties” and “Arugula, a cruciferous vegetable, contains cancer fighting properties.”

The class also helps dispel myths, “like if it’s good for you, it doesn’t taste good!” DeMille said, laughing.

The classes have a loyal following. “Some people have been regulars for 10 years and if they do miss a class, they ask me to send the recipes.” Evaluation forms consistently confirm how much patients – who usually attend after their treatment is over – enjoy the classes:

“What I liked best is the ease of recipes, the good taste and the use of seasonal produce.”

“What I liked best was the explanation of how to use different seasonings.”

“The speakers explained the recipes and answered questions plus it was also fun!”

Given the popularity, DeMille said they might expand to a second quarterly session. “I think this is empowering for people. They have no control over treatment but they can control what they eat.”

Massage is also gaining in popularity among cancer patients,helping to relieve a variety of symptoms resulting from treatment.  Indeed, according to a study in the Journal of Pain and Symptom Management, “it is clear that massage therapy achieves major reductions in cancer patients' pain, fatigue, nausea, anxiety and depression…. It is non-invasive, inexpensive, comforting, free of side effects and greatly appreciated by recipients.”

“Just the act of touch is comforting,” said Gabriele Quaely, who provides massage therapy for cancer patients at Princeton’s Edward and Marie Matthews Center for Cancer Care. “In general, people don’t like to touch those going through treament – they think patients are fragile. But human touch becomes especially important during times when the body is fighting disease.”

Quaely often sees immediate relief from patients after her 20-minute, light massage.  “People get off the table and tell me they feel like a ‘different person.’ It makes them feel they are better.” Aromatherapy, soothing music and LED candles in the massage room add to the calming environment.

Quaely volunteers her time as a way to “give back” for the treatment she received at Princeton when she was battling breast cancer in 2016. As a survivor, she knows the importance of body awareness.  “It’s hard to be in your body – it’s failing on so many levels. Often we are ‘in’ our heads and not in tune with rest of the body but it’s important to have that balance. It is part of the healing process,” she said.

For Men Only

When social worker Dolan Kneafsey, MSS, started working at the ACC at Penn Presbyterian, he quickly noticed a pattern emerged among male cancer patients he would introduce himself to. “They would frequently reach out, asking to talk with me about impotence or other problems that they didn’t feel comfortable bringing up with their female physician or nurse practitioner.” On further examination, he discovered that many support groups or online sources of cancer information “were clearly geared toward female patients,” he said, “Men’s issues appeared to need more support.”

He broached the idea of starting a cancer support group just for men, but, while supported by providers, many told him “Men won’t talk, they won’t come” would be true.  Clearly, though, there was a need. After short survey revealed that men would be interested, Kneafsey created “manly” postcards to announce the group -- featuring a superhero figure – and the lure of refreshments. “I wanted them to stand out from other fliers,” he said, adding that “and people always show up for food!”

This was back in 2015. At the first meeting, eight guys showed up and many returned the following month. Three years later, between 6 and 8 regularly attend the monthly sessions. “They’re coping with a lot of anger… and loss of ego. For example, one participant told him,“I used to be able to put in a deck and now I can’t walk up a flight of steps.”  Kneafsey brings potential topics to discuss at each session but “mostly this is their group, run by them. My goal is that they don’t need me, they’ll support one another whether I’m there to facilitate or not. And it’s working --all have exchanged phone numbers.”

At one session, a participant told the group he was afraid to start cancer treatment but the more he heard from others, the less scared he was. “It’s more than a support group – it’s educational and has become an important social meeting.  They love to tell their story and support others.

“It’s sometimes hard to get them in but I say ‘come for pizza. If you don’t like it, you can leave,” Kneafsey said. “Once in, I hear ‘I wish I had started coming sooner.’”

Another type of “support” group – one that combines talking, laughing and knitting – takes place at LG Health’s Ann B. Barshinger Cancer Institute. But this is more than just fun.  These women – many of whom are cancer survivors or caregivers –not only share stories but also give back, producing scarves and caps which they donate back to the Center.  “Last year we gave out 75 scarves,” said Ann Spinella, a breast cancer survivor who leads the group. “This year I’m pushing the women … gently … to make at least 100.”

Spinella, who credits Chaplain Peter Jupin of Chaplaincy Care and Education at LGH with the idea to create the knitting circle, said that passers-by from the Cancer Institute often interact with the women, thanking them for the knitted donations.  And the group means a lot to the participants, Spinella said.  One women told her that learning to make scarves was the “best therapy.”

“I think there’s therapy in creating and in giving back,” said Patti Roda,director of Operations at the Cancer Institute. “It’s such a positive environment.”

Supporting the Caregiver

In the midst of a cancer diagnosis – and the ensuing treatment – caregivers can be a forgotten population. Yet, the cancer diagnosis greatly affects the caregivers as well. They fear losing their loved one, but may also feel anger or resentment at their own life change when they switch to a caregiver role. And this, said Matt Stevenson, LCSW, clinical social worker at HUP’s Abramson Cancer Center, can lead to guilt. “They think, ‘how dare I feel angry when she’s going through cancer?’ They feel they have to stay strong.”

Providing a “safe place” for caregivers to express their feelings is the basis for the ACC’s newly formed Caring for the Caregiver writing sessions at HUP. Based on the Center’s two other successful writing programs for cancer patients (Writing a Life and Legacy Writing), the caregivers program uses the written – and spoken – word to help them cope with the many changes in their lives.

“Many have given up their professional careers because being a caregiver can be a fulltime job,” said Deborah Burnham, PhD, associate undergraduate chair in the University’s Department of English, who leads all three writing programs. “They are at home or in the hospital, advocating, translating and making decisions when their spouses are very sick. They wonder ‘what has happened to the woman I was?’”

Each session helps participants focus on the profound changes in ordinary life. They first work on their individual pieces and then regroup, with the option to share their stories, if they wish. Stevenson and other ACC social workers attend each session, providing emotional support for the participants if needed.

Although the caregiver writing program only recently started, feedback shows that it is helping participants. “They appreciated a space just for them, as caregivers, where they could express their emotions, without fear of being judged,” said Laura Kotler-Klein, MSS, DSW, social work coordinator at the ACC. “It was freeing for them.”

Burnham feels that, like the ACC’s other two writing programs, it will help people “know they’re not alone in how they feel and will validate what they’ve been through. I come away both humbled and exhilarated.”

Returning to “Normal”

After completing cancer treatment, it can be difficult for patients to transition back to their “pre-cancer” lives. Many fear recurrences, or are anxious that they are no longer “actively” fighting the disease. Others are unsure how to fit back into their former lives, or even what their “new” normal will be.

The Survivorship Next Steps series at the Chester County Hospital ACC helps cancer survivors make that leap into the next chapter of their lives. “They’re still fighting but in a different way. The workshop helps bridge the gap,” said Carolann Gelder, MSN, who facilitates the sessions with Sandy Camarota, MSN,  both survivorship oncology nurse navigators, along with a dedicated multidisciplinary team that includes Cathy Boyle (cancer certified trainer); Kelly Chambers, MSSW; Marion Cella-Reis, PT; Maureen Boccella, RD; Dee Person (Certified Yoga Instructor) and Marianne Casale, MSN, CHPN. 

The six, two-hour workshops focus on the whole person – physical, emotional, and psychological – through a variety of topics. For example, Healthy Nutrition for the Cancer Survivor focuses on what foods give them the most “nutritional bang” for their buck, but also “gives them permission to do what they feel comfortable with,” Gelder said. Medical Management provides strategies for coping with long-term side effects.  Caring for Body, Mind, & Spirit” teaches ways to address anxieties, including deep breathing and mindfulness. A low-impact “chair” yoga helps patients who may have limitations in arm movement or standing up increase their strength and get their energy back.  The final session – Creating Your New Normal – “gives them the tools and resources to move forward,” Camarota said, “including volunteer opportunities. By the end of the program, many are eager to give back.”

“The workshops also assure patients that what they’re feeling and thinking is normal,” Gelder said. “All participants are willing to talk and share, and that support tells them that they’re not alone. It helps participants gain confidence and feel less anxious.”

While supporting patients is the main focus, “we reap benefits too,” Camarota said. “I leave each session with new knowledge to help future patients.”

Not surprisingly, feedback from participants been “overwhelmingly positive,” Camarota said. In response to requests, “we offer a ‘Booster Session’ to participants,” which gives them the opportunity to reconnect and maintain the close relationships they formed during the workshop.