Twenty years after his last treatment, 3-time survivor Jasan Zimmerman thought he was finally done with cancer. He wasn’t. As a 6-month-old, he received radiation therapy for a neuroblastoma on the left side of his neck, which was the likely cause of his thyroid cancer at age 15. For the thyroid cancer, he had radiation and a thyroidectomy, a surgery that removed 3 of his 4 parathyroid glands; the fourth eventually stopped working.
The parathyroid glands help the body to absorb calcium, so Jasan had to take synthetic calcium supplements, including calcitriol, calcium carbonate, and vitamin D. Six years later, the thyroid cancer returned, and he had more radiation. With the blessing of his endocrinologist, Jasan regulated his medications after his thyroid was removed. If he had symptoms, he increased the medications. He thought things were okay, until his doctor retired and he consulted a new one.
How Do You Choose Among Risks?
New tests showed that the medications he’d been taking caused him kidney stones, and put him at risk for calcification of the basal ganglia in his brain. “After I got over the anger of, ‘Oh no, this is happening again,’ I knew I had to deal with cancer once more,” Jasan says. “It’s an ongoing frustration.”
There are no simple solutions. Too low a dose of the medication and Jasan has unwanted symptoms. Too high, and he is at risk for calcification in his brain and urinary tract. If he switches to a new drug, a hormone-based therapy that is not fully investigated yet, he is at risk for sarcoma, because of the radiation he has received.
“There’s no way out of it. Dealing with these issues is going to be here for the rest of my life,” he says. Jasan and other survivors who live with chronic side effects feel that they are stuck in a rerun of A Christmas Carol: the ghost of “cancer past” constantly reminds him of its lasting effect. As Jasan balances work, his personal life and day-to-day cancer maintenance, the ghost of “cancer present” looks over his shoulder. Worrying about the outcome of that maintenance, and the impact of previous treatments, he glimpses the ghost of “cancer future.”
But unlike Scrooge, cancer survivors who have chronic side effects often have few choices: survivorship is a relatively new phenomenon, and people’s response to treatment varies widely.
“Fifty years ago, cancer was a death sentence for pediatric patients. Now, you’re looking at 80% to 85% survivorship rates 5 years out,” said Lauren Lux, LCSW, Adolescent and Young Adult (AYA) Program Director at the Lineberger Comprehensive Cancer Center at UNC Chapel Hill. “We’re just starting to learn more about what survivorship means for all age-groups.”
Pam Simon, MSN, CPNP, CPON, Program Manager, AYA Cancer Program, Stanford University, agrees. “We don’t know what will happen to patients when they finish treatment. We’re learning as they’re surviving, and we can’t assume we know everything. You can’t put people in a box.”
The methodology used across the cancer treatment spectrum is the same: address the most life-threatening element, cancer. Deal with the fallout later. Until more research isolates the late or long-term side effects from specific cancer treatments (see Table), providers have to deal with them on a case-by-case basis. For example, after observing poor, long-term cognitive side effects in young patients who had brain or spinal radiation, doctors now only use it as a last option, when nothing else works.
Every survivor’s response to cancer treatment is unique, but 2 trends stand out. First, pediatric survivors tend to be harder hit, because they receive treatment in the key developmental years, leaving them susceptible to many problems, such as cognitive changes, poor metabolism, joint replacement, early menopause, and fertility challenges.
Second, cancer survivors who undergo bone marrow transplant may have compromised immune systems, variations of graft-versus-host disease (GVHD), or problems with liver or kidney functioning. A cancer survivor doesn’t have the luxury of taking the long view of chronic symptoms.
Survivors’ frustration may turn against their medical team, when new symptoms appear that were not discussed, when there are no good solutions, or when survivors want alternative, less physically and mentally debilitating solutions than are available.
Not Informing Patients
“Apart from just dealing with cancer again, it’s frustrating that no one explained to me that I should worry about calcification from calcium carbonate,” explains Jasan. “The consequences are serious, and only after the symptoms with the stones presented, did my urologist recommend taking calcium citrate, which helps reduce stone formation.”
As Ms. Simon pointed out, the more these treatments and their side effects are researched, the better oncologists can manage long-term issues. However, Jasan suffers from a comparatively rare condition, so less research is done in that area.
The promising hormone therapy Jasan could take to help his calcium absorption comes with the risk of sarcoma. Until more people try that therapy and its side effects become better known, Jasan is unwilling to take the risk of yet another cancer. “It may be another 5 or 10 years before that therapy becomes an option for me,” he says. In the meantime, he has to rely on the self-regulating, fingers-crossed approach he has used since age 15.
Steve, a 2-time survivor who had a bone marrow transplant, took control of his own chronic symptoms, which included back pain, neuropathy, and GVHD-related issues, when he gave up on conventional treatments.
Frustrated by the mental fogginess induced by his pain medication, Steve turned to marijuana to reduce pain. Although some states now offer medical marijuana, Ohio (his state) did not until 2016, which meant he had to get pain relief via unofficial channels for several years.
“I’m now 7 months off pain medication, which I achieved by ignoring those drug cravings when things got bad, taking marijuana when needed, and balancing my work and life by finding time to be physically active, which helps my back,” says Steve. “I also learned to control my gut issues—the skin rashes and odd body cramping from GVHD—through changes to my diet, which is now healthier.”
If managing chronic physical symptoms seems tricky, unpacking the psychosocial baggage survivors carry with them for years is not easy either. Although the Commission on Cancer requires survivorship care plans to address mental, emotional, and social issues, healthcare providers are challenged to provide well-timed care.
Good survivorship plans address psychosocial issues, but Simon believes there is not enough focus on them. Thus, the burden of seeking treatment falls heavily on patients. Ideally, survivors would address their mental health needs as soon as cancer treatment ends. But the stigma of seeking mental help, the desire to put cancer out of mind, and less frequent checkups leave survivors more at risk for mental and emotional ailments, such as post-traumatic stress disorder, anxiety, and depression, or they may not seek help at all.
Louise, a 27-year-old survivor who had a transplant after a recurrence of acute lymphoblastic leukemia, was challenged to find a mental health approach that worked for her. “At 25, I was finally getting my life back after my first treatment ended—I was so excited. Then it was like, ‘just kidding.’ I completely shut down, withdrew, and didn’t talk to anyone,” she says.
After the transplant she had extensive neuropathy, with numb legs and arms, leaving her unable to dress or bathe. As a coping mechanism, she started to open up to others, which helped her feel less depressed. “Mostly, I talk about what’s bothering me, then move on. I find ways to be distracted, too, like going to the movies with friends, which helps me feel more like I’m leading a ‘normal’ life.”
According to Stacy Sanford, PhD, Clinical Psychologist and Director of AYA Oncology at the Robert H. Lurie Comprehensive Cancer Center in Chicago, the transition to a new, normal life occurs at 1 of 2 places for survivors with chronic symptoms.
Adjusting to Life with Chronic Side Effects?
“Survivors face the initial change of adjusting to life immediately after completion of cancer treatment,” Dr. Sanford says. “Many develop late effects some time after, say 1, 2, or even 10 years following treatment, and then have to make new adjustments and new transitions to create another new normal for themselves.”
Even when prepared by their medical team, no survivor expects chronic side effects. The imagined life in survivorship, far removed from cancer treatments’ insidious effects, doesn’t quite pan out. The celebration at the end of treatment that the survivor’s support team and the survivors themselves expect, gives way to an overcast future.
Survivors with chronic sideeffects readjust by using the same methods that helped the first time: talk therapy, peer-to-peer support, meditation, exercise. “Just as we find case-by-case solutions to treat the physical side effects for survivors with chronic effects, finding the right psychosocial support must be equally individualized,” says Ms. Lux.
“Most of the time, I push the frustration and anger out of my mind; it only becomes acute when I’m going in for blood work or getting a procedure done,” says Jasan. “People think that when you’re done with treatment, you’re good. Really, it’s just the start of the rest of your life.”