On November 3, 2014, it was with overwhelming joy that Holly and Richard Manprisio, their friends, family and Northwestern Medicine clinical professionals welcomed Ethan and Benjamin to the world.
Northwestern helped the couple achieve the most important goal in their lives: to have children. As a survivor of childhood cancer, Holly was closely monitored so she could fulfill her dream.
She conquered Stage 4 Hodgkins lymphoma, which started when she was 13 through treatment at Children’s Memorial Hospital (now Ann & Robert H. Lurie Children’s Hospital of Chicago). At age 28, Holly developed breast cancer that likely resulted from radiation when she was a teenager.
“My family and I are here today because of the careful medical attention I have received for two decades. The people at Northwestern paid attention to my health risks and caught my breast cancer in time,” she says.
Holly is among the growing population of men and women who survived cancer when they were children or adolescents. Improved screening and treatment mean that the number of survivors in the U.S. will continue to surge, reaching an estimated 18 million in 2020, according to the American Cancer Society.
Their “new normal” is the fears, medical check-ups and health regimens they must live with. Northwestern Medicine is helping patients adapt so they can handle these pressures and move beyond cancer.
Easing Fears for Cancer Patients
The Robert H. Lurie Comprehensive Cancer Center of Northwestern University is a national leader in scientific breakthroughs, high-quality cancer care, education of oncology physicians and scientists and community outreach. It is designated “comprehensive” by the National Cancer Institute, recognizing that it is one of the best in the country.
“Cancer patients should know that they will always need medical attention, but many times it is not because there is something wrong. It’s because we are trying to prevent something from going wrong,” says Aarati Didwania, MD, associate professor of general internal medicine and geriatrics.
Dr. Didwania became Holly’s internist through the nationally recognized STAR Program, which stands for Survivors Taking Action & Responsibility. The program bridges between Lurie Children’s Hospital and Northwestern Memorial Hospital (NMH) to monitor adult patients and find complications early before they become life-threatening.
At Children’s, Holly formed a strong bond with Karen Kinahan, MS, RN, BC, her pediatric oncology nurse who later transferred to NMH to form STAR in 2001.
Creating New Life
Before her treatment for breast cancer began, Holly and Richard decided to freeze embryos for future family planning. After Holly’s eggs were harvested by Northwestern’s Fertility and Reproductive Medicine specialists, she underwent chemotherapy and radiation, followed by two years on tamoxifen, an estrogen-blocking, anti-cancer drug.
“I am still struck by the fact that someone talked with me about preserving my ability to have children just two days after I was diagnosed with breast cancer,” Holly says. “If I had not thought about it then, I may have lost my ability to conceive.”
This was thanks to Northwestern’s Oncofertility Consortium. Based at Northwestern, the NIH-funded program is a national network of medical professionals and scientists who offer additional choices in reproductive medicine for cancer survivors.
When Holly’s initial attempts to become pregnant failed, she leaned on psychologist Angela Lawson, PhD, assistant professor of obstetrics and gynecology-reproductive endocrinology and infertility. Lawson, whom Holly calls a “lifesaver,” counsels patients with infertility issues and helps them consider other options to have children.
“I work with patients to help them cope with the stress of cancer and possible infertility as a result of their treatment. My goal is to get patients back to a place where they are able to heal emotionally and move forward,” Lawson explains. She and other psychologists with the STAR clinic are immediately available for patients.
STAR also has a strong research mission. For years, the program has gathered input from patients and parents to understand their concerns.
True Peer Support
As a seasoned cancer survivor, Holly truly knows what other patients are feeling and helps them work through the journey. She has spoken to patients individually or in groups, crying with them, raising their spirits and helping them along the same hard road she has traveled.
This volunteer work revealed her talent and enjoyment for helping patients and led her to earn a Master’s in Public Health. Today, as a program manager for NMH, she organizes community health outreach programs.
For the last 22 years, Holly and her family have participated in Northwestern’s Annual Cancer Survivors’ Celebration Walk & 5K. “Without help from everyone at Northwestern, I would not be pushing a stroller for two in this year’s event,” she adds.
Northwestern Cancer Care Extends Its Reach
The recent merger between Northwestern Memorial HealthCare and Cadence Health brings even more innovative oncology programs to help patients become cancer survivors.
The Northwestern Medicine Chicago Proton Center, located in Warrenville, is the only place in Illinois that provides precise proton radiation treatments. Proton therapy targets tumors, not healthy tissues, minimizing short- and long-term side effects.
The LivingWell Cancer Resource Center in Geneva offers 75 programs and services that educate patients, families and caregivers about the journey during and after treatment. Trained, licensed clinical professionals offer psychosocial support, education and wellness activities free of charge thanks to generous donors in the Fox Valley area.
CSI is leading Chicago’s quest for better cancer care
Northwestern’s Cancer Survivorship Institute (CSI) is setting high standards to improve comprehensive, long-term care of patients and their families.
Part of the Robert H. Lurie Comprehensive Cancer Center, CSI helps patients starting from the day they are told they have cancer. Nearly 40 physicians from NMH and Northwestern University Feinberg School of Medicine work to enhance the lives of cancer survivors.
Formed in 2013, CSI oversees specialty services such as the STAR Program for adults who had cancer in childhood or adolescence and the Lynn Sage Breast Cancer Survivorship Program.
Their Supportive Oncology Team provides psychosocial care, nutrition and fertility counseling, social work services, and nurse navigators who educate and advocate for their patients and families.
“Providing survivorship care that addresses unique medical needs is essential to help patients adjust well and live healthy lives,” says institute director Frank Penedo, PhD, the Roswell Park Professor of Medical Social Sciences.
The institute has a close partnership with the Lurie Cancer Center’s Cancer Control and Survivorship Research Program. Also led by Penedo, the program studies ways to improve health and quickly brings these advances to patients.
Responding to the unique needs of cancer survivors, the Commission on Cancer (CoC) has set new patient-centered care standards for accreditation. Funded by the private Coleman Foundation, the CoC-accredited Lurie Cancer Center is working closely with several area hospitals to map a process of survivorship care that will be implemented in these institutions, including monitoring and stress reduction.
Finding the Right Therapy for Each Patient
Somewhere in the world exists the best anti-cancer therapy for each patient. The question and key to survival may be: Can your physicians identify and obtain it?
Physicians and scientists at the Northwestern Medicine Developmental Therapeutics Institute (NMDTI) connect patients with the correct therapies by looking for the root causes of their cancer.
“Medications and therapies for cancer are getting better at a pace unimaginable three years ago. Our patients are responding to these treatments because they zero in on what’s driving the cancer,” says Francis Giles, MB, MD, FRCPI, FRCPath, professor of medicine-hematology/oncology, director of NMDTI and deputy director of the Lurie Cancer Center.
Opened in 2014, NMDTI is a leader in a revolutionary shift in care that emphasizes therapy based on how the cancer is developing rather than how it looks. How big is the malignancy, where is it, and has it spread may no longer be the most relevant questions for some patients.
Using sophisticated molecular diagnostic tools from Northwestern’s Onco-SET program, NMDTI physicians and scientists analyze the genetic profile of malignancies. With that data, and in collaboration with other Lurie Cancer Center specialists and colleagues around the world, they then seek therapies that focus on specific targets for each patient. Baseline genetic tendencies, a larger non-cancerous problem, or recurrence following primary cancer are just some of the possible variables.
Developing new scientific and logistical systems, NMDTI is part of a global cooperative network that optimizes molecular knowledge to find the best treatment for each patient—wherever it is available. Patients of all ages are welcome at NMDTI. Many people seek out the institute because their initial therapy failed. Giles, who came from MD Anderson Cancer Center and UCLA, notes that patients may stand to gain the most benefit if the correct anti-cancer agent is given as a first line of therapy.
NMDTI physicians push the barriers of clinical trials by working to get all appropriate individuals enrolled, not just patients who have very advanced cancer. The institute is also developing novel therapies, including modified cancer-killing viruses, modified stem cells, monoclonal antibodies, and drugs transported on nano-particles that target only cancer cells. Specialists are also focusing on the new wave of immune-modulatory agents that stimulate the body’s immune system so it attacks cancer invaders.
“Our intense involvement with targeted developmental therapeutics makes us one of the top NCI-designated cancer centers in this clinical area,” Giles says. “We bring our patients the best therapies—we want people to thrive, not just survive.”