Jan Perun opened her arms wide to show the difference between life before and after cancer. “You’re over here having a life and you’re having this great foundation,” said the nurse practitioner, looking at her left hand.
“Then you’re told you have cancer, and the bottom drops out. … And when your cancer treatment is over,” she said, sliding her gaze to her right hand, “you’re now over here, and you’re standing on your new foundation, which is totally different than where you started from.
“And you look back, and you want to go back over there, but you can’t. You can’t unring the bell,” Perun said.
Life after cancer is a fast-emerging area of interest and research. Because of early detection and better treatments, more people are now living long after their cancer diagnosis.
At the same time, data show that surviving cancer doesn’t mean that the battle is over — many are left with chronic problems and unmet needs. Survivors often live with anxiety, complications and side effects of toxic treatments that may linger or manifest years later, and the medical community is slowly figuring out how to transition and continue their care.
On a recent afternoon, Carla Hall walked into an exam room at the Breast Cancer Survivorship Clinic and gently climbed up a small step to sit on the exam table and have a visit with Perun, who helps oversee the clinic at UF Health Cancer Center — Orlando Health.
“I wish I could hop up, but my joints won’t let me,” said Hall, who’s bubbly and talkative.
Hall was diagnosed with Stage 2 breast cancer 10 years ago at age 36. Since then, she’s had 13 surgeries, including a double mastectomy and hysterectomy. She’s also had a host of complications along the way.
“My bone density has gone down, and I gained a lot of weight because of the hormones,” she said. She had seizures and has been disabled for the past three years. Like many cancer survivors, she has anxiety. She sees a cardiac oncologist regularly, as cancer treatment can damage the heart.
Hall has been coming to Orlando Health’s survivorship clinic, which opened nearly six years ago. “They keep an eye on my blood work. They’ve guided me to the right places for all my ailments. They keep a very close watch on you.”
But there are not many clinics dedicated to the care of cancer survivors, and it’s still not clear whether they’re the only answer.
“We still have a patchwork in terms of how we’re handling these transitions as we’ve seen success in cancer treatment and longer-term survival,” said Rebecca Kirch, director of quality of life and survivorship at the American Cancer Society.
“We’re trying to figure out and testing out different models,” she said.”What we’re learning is that there’s a high need for providing services alongside oncology services to minimize these effects from the get-go.”
Dr. Mary Ann Burg, professor of social work at the University of Central Florida, recently analyzed more than 1,500 responses provided by cancer survivors about what their unmetneeds were. The survey was conducted by the American Cancer Society.
She found that those who were 10 years out from cancer treatment were still having problems similar to those of individuals who were closer to finishing treatment.
The survivors’ top three unmet needs included physical issues, such as pain and sexual dysfunction; financial needs; and a need for education and information about surviving cancer, follow-up care and self-care.
“What we have to realize is that effects of cancer and cancer treatment are long-term for a lot people,” said Burg, whose study was published recently in American Cancer Society’s journal, Cancer.”And that’s not news, but we need to be reminded to be attentive to long-term problems that come out of cancer treatment.”
The issue came to light recently for Dr. Caridad Hernandez, an internist, who was diagnosed with Stage 2 breast cancer last year and finished her treatment last month.
“In the past, my attitude was that treatment was done, and I would take care of them like any other patient,” said Hernandez, 52,an associate professor of medicine at University of Central Florida’s College of Medicine.
“I wasn’t attuned to them having any special needs as survivors other than monitoring what their oncologists recommended,” she said.
Getting the cancer diagnosis and going through chemotherapy, surgery and radiation changed that perspective for her.
“It’s one of the most humbling things. When treatment ends, you don’t automatically return back to normal. It’s struggle to find out what’s the new normal. How do I recover my stamina, my strength, and that’s one of the most challenging things, I think,” she said.
Dr. Louis Barr, medical director of the Florida Hospital Cancer Institute, said the discussion about survivorship is ongoing in oncology practices: How do you define a survivor? What does survivorship mean? And how do you transfer patient care from the oncologist to primary care or another provider?
His program is developing a survivorship plan— documentation given to each survivor— to help patients better navigate their care during and after treatment.
Aside from physical side effects, anxiety is lifelong for survivors, Barr said. “Even years after being disease-free,they express this concern and anxiety. Occasionally you see a tear in their eye. It brings up memories that they would rather forget but they can’t.”
There may never bea single answer to caring for cancer survivors, because cancer is many different diseases with different lines of treatment and different consequences, said Kirch of ACS.
“But what we do know for everybody is that from diagnosis onward, you need not just oncology treatment, but also palliative care, symptom management, psychosocial support and impairment-driven rehabilitation,” she said.
“It’sa really important goal, and we’re taking it seriously,” Kirch said.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.