Supporting Survivors

WHEN JUDY HETZEL was diagnosed with pancreatic cancer, she began chemotherapy treatments. She still had a job as a palliative care social worker she wanted to maintain. And, at home, she had a full life with her husband and two stout Labrador retrievers.

But doctors at the IU Melvin and Bren Simon Comprehensive Cancer Center asked her to fit one more thing into her schedule: physical exercise.

Hetzel, then in her late 60s, had been active before her diagnosis. She ran three miles a day and walked the dogs another five miles. But with the draining effects of treatment, the mental toll of her illness and a demanding job, she wasn’t sure she could handle a commitment to a regimen of weightlifting, treadmills and planks.

“It was like, ‘You guys just diagnosed me, and I’ve got all these emotions going on in my head, and now you want me to do this?’” Hetzel recalled.

Yet, through sheer will — and the coaxing of exercise physiologist Danielle Halsey — Hetzel has not only managed to stay active, but she’s also telling other people with cancer the value of doing so. “I don’t think people realize the importance of staying fit and doing exercise and having people behind you that can tell you what to do,” she said.

There’s a growing understanding in medicine that care for cancer survivors must go beyond chemo, surgery and radiation. “It’s also recognizing that cancer, as a disease, is much more than just physical. It has an impact on the other emotional, social, psychological and spiritual aspects of people’s lives,” said Tarah Ballinger, MD, the Vera Bradley Foundation Scholar in Breast Cancer Research at IU and Medical Director of Supportive Oncology for IU Health.

Supportive oncology, as this emerging field is known, is in many ways a byproduct of improved treatments that are saving and extending lives but have yet to address other needs.

Judy Hetzel, who pushed through two rounds of chemotherapy and major surgery, rebuilds her stamina with guidance from Danielle Halsey — support that helped her stay active even during treatment.

 

To that end, the IU Simon Comprehensive Cancer Center is building an extensive repertoire of programs aimed at helping the whole patient. Creative outlets such as music and art therapy are available, physical therapy and exercise, as well as acupuncture, massage therapy, and yoga. There are efforts to buttress mental health, including psychiatry, psychology and chaplaincy. It includes palliative care. The center also hosts cancer support groups, annual camping retreats, and a monthly dinner that draws upwards of 60 cancer survivors.

With support from IU Health and organizations like the Riley Cheer Guild, the Heroes Foundation and HOPE (Health Opportunity through Partnership in Education), most support services are provided at no cost to patients.

While such supportive services are growing at IU Health and elsewhere, Ballinger said there’s a need for greater collaboration — ways to identify patients who need help, and new research to determine how to best deliver that help within our health care system.

The cancer center is taking new steps into the field by establishing the Walther Center for Supportive Oncology, hiring a skilled leader to guide it, coordinating the work of researchers and bringing results to patients quickly.

The Walther Cancer Foundation has committed $16.2 million to the new center. The foundation’s namesake, Joe Walther, lost his wife to cancer. Although a physician, Walther felt he wasn’t getting the right kind of support, counsel and advice in caring for his wife — and that he needed more help coping with the challenges.

Tom Grein, the foundation’s president and CEO, said the treatment of cancer is important but there are many other needs — beyond curative therapies — still going unmet. “We’re not talking about end-of-life assistance, we’re talking about how you live with your diagnosis and treatments that you are receiving, and how do you help family members at the same time.”

Grein said there is a shortage of talent in supportive oncology, which may require IU to grow its own. Already, Walther has supported funding for professorships as well as research, particularly studies led by Shelley Johns, PsyD, the Walther Scholar in Psycho-Oncology. Those include:

• An 8-week program to support Black women who are breast cancer survivors and experiencing obesity to adopt healthier lifestyles
• A smartphone application that addresses the psychological needs of breast cancer survivors, such as fear of cancer recurrence, depression and anxiety
• A survey of testicular cancer survivors. It revealed 49% have clinically significant levels of fear of recurrence and an average of 13 unmet needs, many of which are psychological. A new program is being tested to help survivors meet the most common needs.

Strong, supportive care, Johns said, should start from the time a patient is diagnosed. “Supporting people with cancer to live a meaningful life even with the challenges of cancer is the goal. During treatment, we assist patients in managing side effects, sustaining hope and coping with feelings of sadness, anxiety and isolation.”

A patient participates in art therapy with Meaghan Wiggins, part of IU’s supportive oncology program that helps patients express emotions, manage stress, and find moments of comfort during treatment.

 

“Post-treatment, cancer survivors often need guidance to manage lingering side effects, financial burdens from their cancer treatment, and psychological effects such as fear of recurrence and depression.”

As Ballinger puts it: “We’re looking for ways that create a safety net in the background.”

Part of that safety net is Meaghan Wiggins. An art therapist and licensed mental health counselor, she pushes a cart filled with art supplies into the rooms of hospitalized patients, offering them a chance to create something. But it’s clear that art is a medium — a way to break the ice and address deeper issues that may be troubling them.

Visiting Sarah Holdcroft, a 22-year-old patient with sickle cell disease being treated at the cancer center, Wiggins makes gentle queries about her mood, fears, and anxieties. When Holdcroft wants to make a bracelet, Wiggins asks her to choose bead colors that were not necessarily her favorites, but that reflect her mood. “Art can be really healing if you let it,” Wiggins said.

Holdcroft chose grays and blues, as well as purples and reds. She admitted to being sad — and a little scared — by her situation: a young person who might otherwise be enjoying college life but instead must stare at the walls of a hospital room. She welcomes Wiggins’ visits. “It’s a good distraction,” she said.

A few floors down in a conference space converted into a gym, Hetzel — the 69-year-old pancreatic cancer survivor — is running on a treadmill, lifting 50-pound weights and doing planks. The last two years have been hard. Two cycles of chemotherapy. Radiation treatments. A Whipple procedure to remove part of her pancreas. At times, she was extremely weak — far from the dynamo evident today.

Through it all, she remained committed to the workouts, however much they needed to be modified. She credits the work with Halsey not only for helping her regain strength, but also for supporting her mental health throughout her cancer journey. “Dani’s a good support for me because she’s known me through the whole thing,” Hetzel said.

Hetzel has been in remission since October 2024 but recognizes her cancer journey isn’t over. This year, she’s traveled to Ireland and Scotland. She visited her daughter in Colorado and was strong enough for cross-country skiing and snowshoe walks. She says the work in the IU gym built her confidence for those adventures. And for what lies ahead.

For her, the supportive oncology efforts were life changing. For IU, it’s the future of cancer care: treating not just the disease, but the whole person.

 

To support the growth of IU Simon Comprehensive Cancer Center supportive oncology programs that care for the whole person, please contact Amber Kleopfer Senseny at akleopfe@iu.edu.