Although there has been significant progress in the battle of many cancers, unfortunately, research and treatment to date for brain tumors has been much less successful. A diagnosis of a malignant brain tumor, especially glioblastoma, is still considered incurable, with a prognosis of only 12-18 months.
“There Is Nothing Like a Brain Tumor”
“The fact of the matter is, there is nothing like a brain tumor,” said Matthew Loscalzo, L.C.S.W., executive director of People and Enterprise Transformation, professor of Population Sciences, and professor emeritus of the Department of Supportive Care Medicine. “The amount of stress it can create is inhumane. These patients and their partners have to adapt very quickly to the news, because after that first neurosurgery, the patient may have reduced function on a number of physical and cognitive levels. But there is a comprehensiveness to how we partner with patients, partners and providers at City of Hope that is like nowhere else.”
Having a formal system of support for brain cancer patients and their partners is the vision of Lori McGee, who has made a generous philanthropic gift to the Department of Supportive Care Medicine in partnership with the neuro-oncology disease team to establish the Patients, Partners & Providers Working Together: A Strength-based Brain Cancer Program, specifically designed for brain cancer patients and their primary caregiver/partner, as well as other family members and survivors of those who have succumbed to the disease. McGee’s gift will fund the first three years of the new program, with a goal to attract additional funding and expand it on a national scale.
McGee knows first-hand the value of that supportive care, and she is grateful for her own experience when her husband Liam was a brain cancer patient at City of Hope in 2015. Wanting to give back after her husband’s passing, McGee became a volunteer in the neuro-oncology clinic to assist outpatient cancer patients with everything from giving directions to getting them water and blankets to providing comfort. McGee has a master’s degree in psychology, but is able to provide counseling, spiritual support and patient advocacy in a way that Loscalzo said “only someone who has ‘walked the walk’ can do.”
The Path to City of Hope
At the time of Liam’s diagnosis, the McGees were living on the East Coast because of his job. They sought out expert opinions and treatment options at five hospitals and cancer centers in the region, but they weren’t satisfied. A friend recommended they head West to City of Hope.
“It wasn’t until we came to City of Hope that we experienced anything like compassion, and that there was a support system in place for us as we went through this cancer journey,” McGee said. “I saw the level of caring by everyone at City of Hope that we had not seen anywhere else. We were at our wit’s end, and coming to City of Hope was like someone threw us a life-preserver. Both Liam and I knew right away that City of Hope was ‘the whole package.’”
Learning to Cope
“We had social workers reaching out to us, and that was something we were not expecting,” McGee said. “Brain cancer is such a devastating disease. I was the caregiver and I saw that City of Hope had the skills and tools to enable me and my husband to cope, in addition to receiving the best treatment available. As the patient and the caregiver, we need the unvarnished truth. Don’t sugarcoat it. Tell us what’s going on, what to expect and what we can do. I want to extend that to others in a more formal way.”
A Multi-Disciplinary Approach
Seeing the unmet need for psycho-social support for these patients and their partners was the impetus for McGee’s idea to start the program. She enlisted the feedback and support of friends to share their thoughts on what an ideal supportive care program for brain cancer patients and their families would look like.
“This program is very much the result of conversations and collaborations with the project team that made this come together,” McGee said. The partnerships within City of Hope include
Lisa Feldman, M.D., Ph.D. and Behnam Badie, M.D., from the Department of Neurosurgery and the Brain Tumor Program; William Dale, M.D., Ph.D., the Arthur M. Coppola Family Chair in Supportive Care Medicine; and Karen Clark, M.A., research and technology leader.
“When Lori first brought this idea to our attention, I immediately saw the intrinsic value it would have to the patient, and perhaps even more importantly, to the caregiver and loved one,” said Portnow, co-director of the Brain Tumor Program.
The multi-disciplinary team provides a host of services that address the many physical and emotional issues that can surface and help patients and their loved ones have access to the resources they need.
“We have a dynamic team that is investing their valuable time, expertise and knowledge into creating this world-class intervention,” McGee said. “That’s what sets City of Hope apart, that team approach.”
Couples Coping Together
McGee said she was impressed by the Couples Coping Together With Cancer program that inspired this new offering. Also, the inspired idea of a patient and her partner who made a gift to launch the program, Couples Coping Together With Cancer has benefitted more than 2,300 couples with the teachings and support it provides. It is serving as the foundational model for this new program specifically focusing on brain cancer support.
Building on what has been learned from the Couples Coping With Cancer Together program, this unique program specifically for patients and partners affected by brain cancer provides the following benefits:
- The alliance of patients, partners and providers, focuses on the unique strengths that each individual brings to the relationship, and how they can use them to better cope as a team.
- Maximum cohesion and communication in the face of a life-shortening illness
- Increased knowledge about specific techniques to enhance open and honest communication and adopt effective problem-solving skills.
- Prioritized opportunities for couples to live the relationship they have always wanted and of which they will be proud.
“You Are Not Alone”
“There were days when I would get frustrated with Liam because I could see him stumbling,” McGee said. “City of Hope’s compassionate supportive care outreach showed me that yes, it’s the brain cancer, it’s not him. After going through that, I wanted others with the same diagnosis to have an opportunity to share that with each other, to understand that they are not alone in going through glioblastoma, to share in the loss and frustrations that come with diminished cognitive function — the anxiety, the stress and the depression.”
McGee said this gift and this program is what she likes to call “an investment in hope.”
“Brain cancer paints a very dark story, and this program is a wonderful opportunity to create something special, created by and for people who understand what these families are going through,” McGee said. “While he was still here, City of Hope was able to improve Liam’s quality of life for the time he had left. That’s something everyone should have access to, and together, we’re making that happen.”
The Department of Supportive Care Medicine at City of Hope was the first in the United States to fully integrate across supportive care specialties and into the patient’s clinical care and is one of the largest programs of its kind today. The program provides cancer patients with comprehensive physical, psychological, social and practical support services, including care navigation; survivorship programs; specialists in cancer and aging; Child Life specialists; psychological and spiritual counseling; pain management; integrative medicine such as yoga, massage and meditation; and more — all with a focus on maximizing patient and family strengths, quality of life and the ability to best engage in their treatment journey and beyond. Thanks to a gift from the Biller Family Foundation, City of Hope is working to expand this offering across its cancer care system and to advocate for establishing supportive care as a standard best practice for cancer care in the United States.