Cancer survivorship clinics support patients through recovery
The Cancer Institute will host its annual National Cancer Survivors Day Celebration on Friday, June 10, 2016 that will include an educational seminar on topics relating to survivorship wellness such as exercise, diet and creative writing. For more information, visit http://inspiredtogether.org/events/penn-state-cancer-institute-survivorship-celebration-rainbow-hope/ or http://www.ncsd.org/about-us.
Although she’s a cancer survivor, neither word is in Nancy Schlegel’s vocabulary. Instead she considers herself a thriver who conquered her foe.
“I don’t use the word ‘survivor’ and I don’t use the word ‘cancer’,” Schlegel, 77, of Manheim Township said. “It’s not something I focus on and never have, even after I was diagnosed.”
Schlegel refuses to let cancer define her. It’s how she copes with life after cancer, one of many cancer patients who are treated in survivorship clinics at Penn State Cancer Institute.
While cancer survivors may be defined by many as patients who are finished with active treatment, Dr. Niraj Gusani sees it differently.
“Survivorship is defined as the period right from the time of a cancer diagnosis through treatment and beyond,” Gusani, director of the Program for Liver, Pancreas and Foregut Tumors at the Cancer Institute and one of Schlegel’s physicians, said.
The clinics have grown out of necessity because cancer survivors are living longer.
“Historically, people did not survive long after a cancer diagnosis, especially lung cancer,” Dr. Jennifer Toth, director of Interventional Pulmonology, said. “With new technology, new therapeutic agents and also with screenings, people are living longer. We’ve identified that the needs of cancer survivors, in particular, differs from the general population. So survivorship clinics became a very important part of the multidisciplinary whole person care model of cancer care.”
“It’s a good problem to have,” added Gusani, “We have 14 million cancer survivors in this country and it’s expected to increase to 18-20 million in the next few years. People are realizing that this team effort to take care of the survivors at all levels for all their different needs is really crucial to help them have a more functional and optimal existence.”
One reason cancer-specific programs and ongoing evaluation of survivors is important is the possible aftereffects of chemotherapy, radiation, or surgery that may not be recognized by a non-specialist.
“There are a lot of changes to the body, both in terms of appearance but also in terms of physiology and function that may be under-appreciated,” Gusani said.
The cancer may be gone but many patients still experience gastric issues or may have an ostomy bag. Some suffer from chronic pain or inability to gain weight. Breast cancer patients, for example, may have body image or sexual issues.
Aftereffects differ as much as cancers do.
“In the case of some lung cancers, we’re removing part of the lung, so sometimes people are more short of breath, sometimes they have residual pain issues or functional issues,” Toth explained.
Patients who are treated with chemotherapy and radiation therapies may have nutrition concerns and experience more fatigue.
“We can help people understand what side effects and what aftereffects they’re feeling,” Gusani said. “Similarly, emotionally and psychosocially, there are a lot of changes and issues patients must deal with.”
One common emotional effect is survivor’s guilt.
“They’ve gone through treatment with a friend or other people they met at their cancer center and someone survives and someone doesn’t or someone has a recurrence and someone doesn’t,” Gusani explained.
Difficulties with insurance, financial woes, relationship issues and trouble adjusting to regular life are other issues survivors deal with.
“For all those reasons it’s important to have an effort to diagnose, treat and follow cancer survivors for more than just their medical problems,” Gusani said.
Schlegel hopes to help other patients who may be struggling with the emotional side of treatment by sharing her own story.
“I would say I focused more on the spiritual and emotional than the medical,” she said.
Unlike other older people who may live alone, she has a large support network of friends and church members who have helped her along the way. And she has faith.
“There was so much that I get on my knees literally every night and thank God for,” she said. “I had people in here day and night and it was incredible because I know not everyone has that.”
She also had her 14-member team at the Cancer Institute that made (and still make) her feel safe and secure.
“At Hershey, when I had a problem, they were there for me,” she said. “I didn’t worry. It wasn’t my job.”
Nancy was diagnosed with gastric cancer in October of 2012 after doctors were baffled for six months of trying to figure out what was wrong.
“It was masking itself as two things, irritable bowel and an ulcer,” Schlegel said.
She endured what seemed like endless testing complete with multiple endoscopies, colonoscopies, MRIs, CT scans, and blood tests.
“Finally, my gastro man found it. Then all hell broke loose.”
Her doctor had made her appointments at three cancer facilities and told her to pick one.
There was no question for Schlegel.
“I’m a Nittany Lion; l bleed blue and white. I’m going to Penn State,” she said. “I knew I was in the best hands possible and only after the fact did I know how great the team was at Hershey.”
After chemo and some bumps in the road, she had surgery in February 2013 to remove her stomach and part of her liver. The technical term is a total gastrectomy, which means her stomach was removed and her esophagus was connected directly to a pouch made of her small intestine. Additional chemo followed.
Schlegel continues to be seen in Hershey every three months to monitor her health. While she’s not the type of person who feels comfortable sitting and talking to others who have had their stomachs removed, she hopes to give back and help others going through treatment by sharing her own story and the mindset that got her through.
“I can motivate people,” she said. “You know, I don’t want to see any of them just give up,” she said.
She had also had a preview of cancer treatment 27 years ago when she found herself caring for her late husband for over a year as he died from cancer.
“I didn’t fear it. And I think people fear it and then you’re doomed. You’ve got to be a little feisty to get through it,” she said. “It leaves its scars; just don’t let it take over your life.”
Schlegel accepted that she was not the one in control.
“I do not know how anyone can go through what I went through without faith. That’s what gives you strength and takes you through it,” she said. “It is freeing to know that you’re not alone and God never lets go of that right hand.”
Before survivorship clinics emerged, specialized care ended when the disease was gone.
“You received your cancer diagnosis, you had it treated and once there was no evidence of disease, you were basically returned to your primary care physician for routine healthcare,” Toth said.
That wasn’t ideal.
“Patients can fall through the cracks. There may not have been good communication about what to look for in terms of results of the patients’ treatments. The oncologist may not have seen the need to follow the patient and the primary care physician may not have the expertise to understand the side effects or know what aftereffects to look for.” Gusani said. “People are realizing that we need to do better for our survivors and we’re figuring out how.”
When the Penn State Hershey gastrointestinal cancer survivorship clinic was started in 2009, the goal was to offer more than just the standard, follow up care.
“We instituted a multidisciplinary team that includes a psychologist, resources for emotional support, a social worker to help with insurance issues,” Gusani said.
Financial counseling and a nutrition evaluation and counseling are available to patients also.
“The idea is to incorporate all of these other things that patients might need in the one survivorship visit,” Gusani said.
Now there are many clinics within the Cancer Institute. Each cancer requires different treatment and follow up care. There are cancer-specific support groups available to patients as well. These support groups are part of the Cancer Institute’s comprehensive plan for its patients.
The meetings offer survivors and their families opportunities for camaraderie and discussions about some of the unique issues that they have.
“Ultimately some of these patients end up dying of their disease and the support groups give opportunities for families to gain support from each other and continue advancing advocacy for the diseases,” Toth said.
- Jade Kelly Solovey