Title:A better journey

Cancer survivorship research initiative studies life after diagnosis and treatment

When Georgetown family medicine physician Sarah Kureshi felt a strange mass in her toddler daughter’s stomach, she suspected something like an intussusception, an intestinal blockage. Two-and-half-year-old Nusayba had vomited once that morning, but was feeling better. Still, to be sure, her mother brought her to the hospital to be evaluated.

“We were in the ultrasound room playing around and the radiologist came in and looked at me and said, ‘I have some really bad news for you,’” Kureshi recalls. “I’ve been on the giving end of that, and it was so hard being on the receiving end. She said, ‘Your daughter has tumors throughout her liver that are pretty diagnostic of hepatoblastoma,’ which is liver cancer. I called Waj.”

Her husband, Wajahat Ali, was so unfamiliar with cancer that he wasn’t sure if stage IV was good news or bad news.

“So many of us don’t know the basic information about cancer,” notes Ali, who is an author and columnist. “Suddenly you’re learning about cancer stages, what it means that it metastasized and that there was a spot on her lung. There were spots all over her liver, so she would need a transplant, from a living donor, with a blood type that matched. Plus chemo.”

There was so much practical information to learn and process, in addition to the emotional and physical toll not only on the patient but on her family as well, including her brother Ibrahim who was four at the time.

The growing field of cancer survivorship

At Georgetown University’s Lombardi Comprehensive Cancer Center, researchers study the long-term care of people living with cancer—how to improve their experiences and minimize any adverse effects of the often intense treatment.

“I define cancer survivorship as optimizing a person’s wellbeing at any point from diagnosis going forward into the future,” says Nina Kadan-Lottick, professor of oncology and pediatrics at Georgetown School of Medicine who leads the Survivorship Research Initiative for Georgetown Lombardi with collaborators at MedStar Health. “We are looking at how to optimize one’s physical, emotional, and family functioning at every point in the cancer journey.”

As a pediatric oncologist, Kadan-Lottick’s interest in survivorship began when she saw patients who were many years past therapy. “I was documenting the kind of medical problems one has later in life, like the risk of new cancers, infertility, osteoporosis, and cognitive difficulties. In caring for patients, I realized those were getting in the way of people living lives the way they wanted. As my career progressed, I began thinking of cancer more like a chronic disease rather than an event.”

Pediatric oncologists pioneered the field of cancer survivorship, she explains, “for the simple reason that we saw high cure rates in people under 20. We saw kids surviving, and we also saw them grow up. We observed things such as cognitive difficulties in people with cranial radiation or chemotherapy with spinal taps. We saw second cancers in girls who had radiation even as pre-pubertal girls. We saw them getting breast cancer in their twenties and thirties. We also saw a lot of infertility.”

Many cancer survivors—young and old—are living with challenging conditions like colostomies, residual swelling in the limbs, and pain in the fingertips and feet. Therapies to treat invasive cancers are intense, and can impact the heart, kidneys, and hearing, as well as affect physical intimacy. Survivorship care includes screenings like cognitive evaluations, or breast MRIs for women who have had chest radiation earlier in life. For younger patients, it may include fertility preservation such as egg and sperm harvesting and storage.

While Kadan-Lottick’s research began with understanding how to measure the late effects of cancer treatment, it has evolved today to include how to prevent or mitigate them earlier in the treatment experience. According to the National Cancer Institute, a part of the National Institutes of Health, today there are more than 18 million cancer survivors in the United States. Currently less than 20% of cancer patients get survivorship care—a figure she hopes to increase.

Importance of social support systems

Kureshi and Ali credit a wide network of people who supported their family—from nurses, physicians, and hospital staff including child life specialists, custodians, and art therapists, to family, friends, colleagues, and people they didn’t even know who signed up to be liver donors.

“A strong social support system is an incredible predictor of well-being,” says Kadan-Lottick. “Not everyone has one, but when you do, leaning into it is really important. Share your needs and let people help you think of what’s possible and what’s not.”

Kadan-Lottick notes that in her experience, the term “cancer survivor” applies not only to the patient but to that person’s caregivers as well.

“Cancer doesn’t affect just the individual. Everyone invested in that person feels emotional distress. Beyond that, there are often opportunities lost that can be disruptive and a financial impact on caregivers. Often caregivers are not taking care of their own health.”

For some cancer patients, the challenge can be asking for and accepting the assistance of their community, she notes. “Sometimes I see people who do have a support system, but they don’t want to ask for help, and they struggle. It’s not like when you have the flu for a week and you put everything on hold. With cancer you just can’t do it alone for that long. You can’t do it financially, or logistically.”

Her team is researching how to guide people at the time of diagnosis to understand and prepare for the care coordination and practical skills they will need—for example, how to keep track of critical health information, whom to ask for different types of questions, and how to get the most out of visits.

“But this has to be something with a light touch, because these are people who are going through a lot,“ she adds.

Kureshi and Ali consider themselves lucky that their relationship grew stronger during the challenging time of Nusayba’s diagnosis and treatment.

“I was in the hospital half the year,” Kureshi recalls. “Couples going through this either grow together or grow apart. We are fortunate that we were on the same wavelength. The other thing is the impact on her older brother. He and I were very close and then, all of a sudden, I’m in the hospital with Nusayba and not home.”

Inspired by medicine

When she was just 11 months old, Grace Bucklin’s parents picked her up from childcare one day and her entire right side was swollen. They brought her into MedStar Georgetown University Hospital, where she was diagnosed with a rare kidney cancer called Wilms tumor.

“I think it was two days later when they took out my entire right kidney, and it was the biggest tumor per body mass that the doctor had seen,” notes Bucklin, now 21 years old.

After surgery, chemo, and radiation, she now marks almost 20 years cancer-free.

“I’ve grown up going to all these different doctors–radiation oncologist, cardiologist, dermatologist. My mom and I added it up and I’ve been to 18 different specialties.”

Her cancer survivorship care at Georgetown has provided critical screening for things like high blood pressure and cognitive function. The support has also helped her family, she says.

“My parents were able to meet with social workers, and my older sister would do all the art therapy. It helped her understand what was going on.”

Bucklin is so comfortable in the medical setting that she’s decided to join the field as a practitioner, beginning her studies in osteopathic medicine next year, specializing in pediatric oncology.

“Two years ago I worked at Georgetown in Dr. Toretsky’s research lab and it was really fun,” she says, referring to pediatric oncologist and researcher Jeffrey Toretsky. “It made me realize that I want to be a doctor and help kids live the life that doctors were able to give to me.”

Making time for cura personalis

“Cancer survivorship care is the embodiment of cura personalis,” says Louis M. Weiner, director of Georgetown Lombardi, noting that care of the whole person means the totality of their needs, including those of their care circle.

Good cancer survivorship care involves additional screenings and complicated, nuanced conversations with patients and their caregivers, and among care providers. Whether through a specialist or in the primary care setting, sensitive whole patient care takes training, resources, time, and an effective structure undergirding it all.

“The discipline of cancer survivorship is one where we have to develop the language, tools, and standard operating procedures, and we have to figure out what the right handoffs are,” explains Weiner. “When do they come back to see the oncologist, the surgeon, the radiation oncologist? When do they need to be transitioned back for cancer-related care as opposed to complication-related care?

“We make that happen through our nation’s comprehensive cancer centers, which provide the intellectual framework, and practical knowledge needed, to help drive this process,” he adds. “But people sometimes are coming from great distances to get their treatments. They need to be able to get the care in their communities. We can help by educating community partners so that they understand what they need to do in order to maximize the benefit for their patients.”

When providers are able to offer extra time for cancer survivors and their caregivers, it can make all the difference.

As a physician herself, Kureshi had a strong knowledge base going into the situation with her daughter’s cancer treatment but recalls with gratitude when care providers could fill in the blanks, such as pediatric gastroenterologist and transplant specialist Nada Yazigi at MedStar Georgetown University Hospital.

“I remember Dr. Yazigi, when we were pre-transplant, took me aside and talked to me for an hour and answered all my questions—every single one.”

Kureshi also commends the work of child life specialists, who help children and their families feel more comfortable in hospital and health care settings.

“They were constantly putting games together for the kids. They come to the room and sing with the kids. They offer pet therapy. For her first IV, Nusayba was terrified, and the child life specialist helped calm her by talking about what was happening. They had such an impact on our whole journey.”

A lot of Kadan-Lottick’s research is how to inform primary care providers about cancer survivor screenings and care in a time-efficient, respectful way, so that they can successfully support patients down the road.

“It is more and more challenging,” says Kadan-Lottick. “Often physicians and other providers are very pressured in terms of how much volume they see, forcing them to spend less time with each patient. And insurance companies keep requiring more documentation and test authorizations, so we spend a lot of time on that.”

Financial toxicity

With or without insurance, individuals with a cancer diagnosis often experience financial challenges, which can exacerbate their health concerns. Many people don’t anticipate these added costs, but given uncertainties about insurance coverage it’s critical to consider.

“I did some research and realized we would need an additional $100,000 a year,” says Ali. Even though they had health insurance and both parents earned income, they had to cut back on work to take Nusayba to her appointments and stay with her in the hospital. There were co-pays and deductibles, prescriptions, and other unexpected expenses. They created a GoFundMe and drew support even from strangers who were moved by their story, which helped them avoid going into debt—a problem many American cancer patients and their families struggle with. In fact, 40% of cancer patients deplete their life savings within two years.

“We live in a very complicated world when it comes to the financing of medical care,” says Weiner. “And everybody has a different set of challenges. Not all medical procedures are going to be covered by insurance, whatever that insurance is.”

When money is tight, cancer survivors and their caregivers end up making difficult choices to make ends meet. They might skip appointments, procedures, or filling prescriptions. And the added stress can compound health issues.

“Dealing with financial toxicity is a real challenge in the cancer survivorship space,” Weiner affirms. “It’s important to have individuals in the health enterprise who can support people through it, including financial counselors and social workers. At Georgetown, we also have the Health Justice Alliance, to help people get access to legal assistance.”

Life-giving research

Today Nusayba is a healthy 8-year-old with little recollection of her time as a toddler with liver cancer. Her parents are grateful not only for the care their family received, but also for the invaluable decades of scientific research that preceded her diagnosis. It saved her life.

“The chemo protocol that she got was incredible,” Kureshi says. “It targeted her tumor, and was extremely effective in getting rid of the tumor in her lung, and all the sites in her liver, while minimizing the chemotoxicity. But in the early 2000s, they did not have that protocol around, so I don’t know if she would have survived then.”

In the future, Kureshi hopes that research will develop immunosuppressants that are gentler on the kidneys, to help people like her daughter minimize the need for a kidney transplant later in life.

Ali notes that Nusayba is down to just two medications, versus 12 different prescriptions at one point. Because she had an organ transplant, she will have lifelong blood draws, Kureshi adds, and she’s had some hearing loss from her treatment. She will also require echocardiograms every two years. Living with a family medicine doctor has of course been a big plus for Nusayba’s survivorship care, but the family plans to enroll in the official program soon.

“I have patients who are part of the cancer survivorship program who appreciate it so much,” Kureshi says. “Once somebody ‘beats the cancer’ then people think it’s done—but this program really takes into account the long-term effects and how to best support people as they continue to live their lives and grow and thrive.”

Kadan-Lottick underscores the ties between this work and cura personalis, at Georgetown and beyond.

“Cancer survivorship aligns with taking care of the whole person, because you are more than your tumor, more than a test result. You are a person experiencing these things, and you’re a person with loved ones who are experiencing this with you.”