The head-spinning amount of information patients receive when they’re undergoing cancer treatment can be overwhelming, and life after treatment doesn’t slow down much either.
Once treatment is complete, patients have follow-up exams and check-ups with their primary care physicians, and a group of nurses and doctors at Community Health want their new Cancer Survivorship program to help make sure the patients’ doctors know what is needed.
“These patients are a special population with specific issues and needs that may come up if they don’t start during treatment,” said Tamika Turner, a nurse practitioner and director of the Survivorship program.
The Survivorship program is set to be running in early 2018 and will be open to all current and former cancer patients from any hospital. Nurses will serve as the program ambassadors, and will address physical needs, mental health issues, financial concerns, spiritual issues and other challenges that come up in the course of treatment and recovery.
For years, hospitals have had nurse navigators, who help patients through their treatment, but a more recent focus has been on programs to help cancer survivors once treatment ends.
Franciscan Health offers a 12-week support program called Moving Beyond, which addresses the needs of patients returning to their new normal after treatment. The group provides a supportive forum where patients can talk about their fears and worries, learn about health, nutrition and exercise goals and discuss spiritual issues and concerns.
The programs aim to address questions and give direction to patients, but perhaps the biggest issue is answering the question: what if my cancer comes back?
“The fear of recurrence is the No. 1 issue my patients have, because every time they come for a follow-up mammogram, they’re wondering what will happen at that visit. ‘Has my cancer come back?’ That never goes away,” Turner said.
Patients commonly experience a variety of physical side effects during chemotherapy or radiation treatments — but some issues might occur later. Pulmonary fibrosis, or scarring in the chest and lungs from chemotherapy, is one example. Other issues might include neuropathy or pain and numbness from nerve damage, even after treatment is over, Turner said.
The new program will work to make sure any and all issues are brought to their doctor’s attention, Turner said.
For example, cancer patients need certain scans and tests done throughout and after treatment, so program coordinators will help make sure the patients are on track with those appointments, she said.
But that’s just the physical part.
The program also will help patients with other needs as well, such as making sure they’re interacting with family and friends and educating caregivers to make sure they understand their loved ones’ cancer and treatment needs.
“We’re creating an assessment tool,” Turner said. “As patients go through treatment, it will help stratify which ones are on a lower risk for cancer recurrences.”
Other resources, like support groups, art therapy groups and partnerships with gyms and other exercise studios, will also be part of the program, Turner said. Patients going through treatment or who have finished a radiation and chemo regimen benefit enormously from yoga and meditation classes, massage therapies or learning relaxation exercises, such as deep breathing, for example.
“The counselors will show them how to use methods that are non-pharmacological to help reduce their anxiety and stress, help them not just be well, but thrive,” she said.
Varied types of support and therapies are critical to patients’ recovery, said Dr. Robert Goulet, a breast surgical oncologist with Community Health.
“Often the failure of treatment is a result of the failure for a continuum of care where patients fall between the cracks,” he said.
“Unfortunately, at (many hospital) networks there is a disconnect between the active phase and the primary phase of care. The goal should be to circle the patient back to primary care and where surveillance and continued monitoring should occur. Often, what happens is the patient gets to and out of acute care. They’re cut loose, more or less, and in many cases the patients are left without the appropriate follow-ups, with the ambiguity of who to contact about follow-up care.”
Nurses and other professionals will be contacting patients regularly, which is an important part of the program, Goulet said.
Community Health had cancer support programs previously, but more focused attention and more manpower were needed for the large number of patients at the growing hospital network, Goulet said.
In addition to helping patients make sure they know their options and recommendations for post-treatment care, Goulet wants to see other health aspects addressed as well, particularly spiritual care and education. He sees the program partnering with the hospital’s palliative care unit and working on pain management, weight management, chaplaincy and financial counseling, as just a few examples.
A patient’s primary worries initially after diagnosis are recurrence or a fear of not being there for their families.
“The obvious concern is what treatment is going to look like, how rigorous it’s going to be,” he said. “‘Am I going to be there for my kids?’”
After a period of time and once treatment has been underway or nearly complete, it’s another range of issues, he said.
“At that phase of care, patients hit the wall,” he said.
The psychological stresses from treatment, such as body image concerns or issues with intimacy, come to light then, he said.
“Patients need to feel confident that they are still in a caring environment that will monitor their progress and continue to be a resource for them. No matter what phase of care they’re in, they have to have that confidence. With time, the goal is to get the patient to that new normal, to acclimate them to life after cancer. I predict we’ll see an improvement in survival,” he said.
Here is a look at the support programs hospitals offer:
Nurse navigators specialize in a variety of cancers to help patients. Call them Monday through Friday at 317-355-4114, 8 a.m. to 4:30 p.m. or visit ecommunity.com/services/cancer-care/nurse-navigators to learn more.
The Survivorship program, which will focus on patients needs after treatment, is set to begin in 2018.
Nurse navigators have special training in cancer care and work with patients by providing one-on-one support.
Franciscan also offers a support program called Moving Beyond, which is a free 12-week program for patients who’ve gone through treatment.
Learn more about both programs by calling 317-528-1412.