Even though cancer treatment ends, the need for physical and emotional care continues
When Marty Hogan found out at age 34 that he had acute lymphocytic leukemia, a rapidly progressing blood cancer, the news devastated him and his pregnant wife, Whitney. It was 2016, and the doctor gave him a low five-year survival prognosis.
His mind started to spiral.
“I was terrified that I wasn’t going to meet my kid and Whitney was going to be in the delivery room by herself,” says Hogan, a dentist in Winnetka.
He did get to meet baby Clark — and baby Phoebe two years after that — but other challenges continue to plague Hogan’s cancer journey. After three and a half years of chemotherapy, he continues to feel the aftereffects of treatment, including headaches, mouth ulcers, neuropathy, rashes, joint pain, loss of taste, and loss of feeling in his fingers, feet, and left leg.
“I’m 38, and I feel like I’m 80,” Hogan says. Now in remission, he adds, “But I’m glad to be alive and to be here, so I’m not going to complain.”
For many, dealing with cancer doesn’t stop when treatment stops. Cancer survivorship starts at the minute of diagnosis, but it can get more complicated after treatment ends. Physical and mental repercussions will continue to challenge many of the approximately 16.9 million U.S. cancer survivors alive today. They often have to deal with long-lasting side effects of treatment, financial burdens, and doctors from different specialties who don’t work together to coordinate care.
Survivorship care plans
“All survivors need, and sometimes lack, a clear prescription of what their follow-up should be,” says Julian Schink, MD, chief medical officer of Cancer Treatment Centers of America.
In the past decade, many cancer centers have added survivorship teams or clinics. A clinic can create personalized survivorship care plans for patients, as well as help them to manage the many physical and emotional issues that continue after treatment ends.
Hogan, for example, sees specialists such as a dermatologist, nutritionist, and physical therapist at an adult survivorship clinic at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
Increasingly, healthcare providers are recognizing that even with very curable cancers, the effects can continue for quite a while. “Treatment has a long tail on it,” says Timothy Pearman, PhD, director of supportive oncology at the Lurie Cancer Center. Written plans can help set the stage for future care.
According to the Lurie Cancer Center, survivorship care plans can include:
- A schedule for follow-up healthcare, including
checkups, screening tests, and labs.
- Information about common side effects of treatment.
- Screening recommendations for possible late effects of treatment.
- Healthy lifestyle tips to improve quality of life and decrease the risk of cancer recurrence.
Back in 2006, the National Academy of Medicine report “From Cancer Patient to Cancer Survivor: Lost in transition” focused attention on the unmet needs of cancer survivors — a population that researchers expect will increase to 26.1 million in the U.S. by 2040. The report recommended that each cancer patient receive a survivorship care plan.
The American College of Surgeons Commission on Cancer followed that guidance with new standards for cancer program accreditation that required survivorship care plans. But some studies found that implementing these plans was time-consuming and expensive without evidence of beneficial patient outcomes. In May 2019, the commission dropped the requirement but still recommends such plans.
Survivorship care plans are helping to address the chronic complications and aftereffects of cancer treatment. Despite what Schink calls “a fragmented environment,” in which each cancer center does its own thing, many Chicago-area centers are giving survivors a better road map for life after cancer.
Fretting the finances
The National Cancer Institute defines survivorship care as focusing on a person’s well-being from the time of diagnosis through the rest of their life.
“We think of cancer as something that ends when treatment ends, and there’s no understanding of how disruptive it is,” says Tamara Hamlish, PhD, a breast cancer survivor and research scientist at UI Health.
In 2003, when Hamlish was 42 years old, she was diagnosed with an aggressive form of HER2-positive breast cancer. Intensive treatment — surgery, chemotherapy, and radiation — turned her life upside down.
“It was debilitating. I tried to work for a year immediately after my treatment ended,” she says. “I was exhausted and stressed. Parenting was hard. My kids were young. I was trying to figure out what to share and not scare them,” the mother of two says. She pared back to part-time work, before eventually returning to work full time two years after her treatment ended.
In the meantime, she was struggling with increased medical costs, diminished financial reserves, and the mental load of knowing she wasn’t earning her potential. “It took 10 years to get back to my original salary,” she says.
There is a name for this other kind of side effect — financial toxicity — and Hamlish calls it a huge problem. Continued costs of care, including mounting out-of-pocket medical expenses, can cause stressful financial problems. “It’s especially traumatic for young people” who may not have much of a safety net, she notes.
The situation is only getting worse: The American Cancer Society’s 2020 report on the cost of cancer care in the U.S. finds that out-of-pocket spending is prohibitively costly and will drastically increase. In 2018, people with cancer in the U.S. spent $5.6 billion in out-of-pocket costs for their treatment. People of color, those with lower incomes, and younger patients are more likely to experience financial hardship from these costs, the report says.
As lead investigator of a program for young breast cancer survivors at the University of Illinois Cancer Center called Young And A Survivor (YAAS!), Hamlish hopes that young women, especially those in underserved communities, will have an easier time accessing financial and employment information than she did.
“We want each woman to have, from the start, all the resources she may need, so she doesn’t have to spend countless hours trying to do it all by herself,” Hamlish said in a 2019 news release announcing a $1.8 million grant from the Centers for Disease Control and Prevention to establish the program.
The program brings together survivors, families, clinicians, local support service providers, researchers, and patient advocacy organizations to help young breast cancer survivors navigate post-treatment care and survival.
Partner organizations include Triage Cancer, a nonprofit group that offers guidance on practical, legal, and financial issues. “The problem isn’t just the cost of care,” says cancer rights attorney Joanna Morales, chief executive officer of Triage Cancer. “It’s all the other things that can impact your financial situation. It’s understanding your employment rights, understanding if you take time off work, how do you replace that income?”
Morales says that 10 years after the passage of the Affordable Care Act, survivors still ask whether companies can deny them health insurance. (Usually, the answer is no.) “We help clarify what the law says versus what their neighbor told them so they can make educated decisions,” she says.
Surviving with support
Access to services and social support networks such as these is one of the keys to resilience in cancer survivors, says Yasmin Asvat, PhD, who specializes in psychosocial oncology at Rush University Medical Center.
Asvat studies quality of life and resilience in cancer patients and survivors. She says she works with survivors to help them “tap into social supports and set boundaries around those who are not supportive” and to find ways of dealing with such aftereffects of treatment as fatigue, fear of recurrence, and what’s called chemo brain.
“We also encourage patients to have some compassion for themselves to realize that healing can take time,” she says. “Fatigue is a pervasive side effect of cancer treatment. Often, it’s very disruptive, and it requires acceptance and flexibility — two important qualities for resilience.”
Acceptance is also a keyword for the Lurie Cancer Center’s Pearman, a cancer survivor himself, of stage 3 head and neck cancer diagnosed in 2006. By acceptance he means, realizing “it’s okay to not be okay.” Pearman calls “the tyranny of positive thinking” not helpful.
“Whenever someone gets diagnosed with cancer, they get bombarded with this message of positivity,” he says. “It’s not realistic to think you could be diagnosed with a potentially life-threatening illness and be positive all the time. It can lead to a lot of guilt, to people saying, ‘I don’t know what I’m doing wrong because I’m clearly not coping, I should be throwing a party for myself when I go into remission.’”
Pearman says his patients gave him a crash course on how to deal with his own anxiety after a lump in his neck led to his diagnosis. In addition to immunotherapy, he found that spending time with friends and getting back to the gym helped. “If there’s anything that’s a one-size-fits-all, it’s exercise,” he says. “Exercise helps with depression, anxiety, fatigue, insomnia.”
Such skills, along with social and emotional support, are important as cancer survivors look toward the future. Hogan, the dentist, says he has learned from Pearman “how to stay focused on what is truly important in my life.” But it hasn’t been easy.
“One of my big challenges was having a purpose,” Hogan says. He wanted to go back to dentistry, but his rashes and the loss of feeling in his fingers kept him from practicing.
Still, he has been able to continue in his job as director of the dental residency program at Loyola University Medical Center, where he also teaches and gives lectures.
“I was lucky,” he says.
Then there is the role of true grit. Hogan had run a couple of 10K races with friends but never a longer race. He decided to walk the Chicago Marathon in 2019.
“I was feeling kind of down from the side effects and the grind from chemo, so I wanted to do something to prove to myself I was still some sort of ‘normal,’” he says. “And it was kind of my way of saying ‘F you’ to cancer, if that makes sense.” Three days after one of his chemo treatments, he walked the 26.2-mile course, finishing in six hours and 55 minutes.
It was such a moving, meaningful experience that he decided to walk the marathon again in October 2020 with a team from the Leukemia & Lymphoma Society. But just as Covid-19 prohibited so many events in 2020, it officially canceled the marathon. Hogan and others walked the course anyway, to make a statement and to raise money to fight leukemia. He finished the course in the same time, just under seven hours.
“My times were definitely really slow,” Hogan says. “But I have a very big challenge running due to my neuropathy and having no feeling in my feet, so I chose not to run and end up flat on my face. I just wanted to finish, even if it took me three days.”
As for many cancer survivors, the anguish is still there, lurking just under the surface. As treatments improve and the population of cancer survivors grows, survivorship care plans and other support measures are becoming increasingly important. Because, for many, the need for cancer care never truly stops.
Chicagoland organizations offer support groups, social activities, healthy lifestyle activities, exercise sessions, educational workshops, and other resources to anyone impacted by cancer.
- In Chicago Gilda’s Club Chicago has a center in River North, as well as programs in partner hospitals in Chicago and Oak Lawn. gildasclubchicago.org Wellness House offers programs at the Mile Square Health Center at the UI Health Cancer Clinic. wellnesshouse.org
- In Northern Suburbs The Cancer Wellness Center is located in Northbrook and has satellite programs in Grayslake, Park Ridge, and Libertyville. cancerwellness.org
- In Western Suburbs Wellness House serves the Hinsdale area and facilitates programs around the Chicago area. wellnesshouse.org
- In Far Western Suburbs The LivingWell Cancer Resource Center is based in Geneva. livingwellcrc.org
- In Southern Suburbs The Cancer Support Center is located in Homewood and offers satellite programs in Mokena. cancersupportcenter.org
- In Northwest Indiana The Cancer Resource Centre serves Munster and surrounding areas. myccrf.com