One of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain insights as caregivers, patients, and advocates; leaders of nonprofit organizations could use the information shared to help them in their work supporting patients and families struggling with mental health issues.
The session was moderated by John Hopper, President of the Fibrolamellar Cancer Foundation, and Jim Palma, Executive Director of the TargetCancer Foundation, both co-chairs of NORD’s Rare Cancer Coalition (RCC). Hopper and Palma were joined by Jessica Thomas, LCSW, Director of Patient Education at the Neuro Endocrine Tumor Research Foundation (NETRF), an RCC organization. As someone who has recovered from a rare cancer, Kielan Wilson-Premo, CEO of Youth Buddies brought an important patient perspective to the table. Lastly, Robin Lockridge, PhD, a clinical neuropsychologist at Leidos Biomedical Research and the National Cancer Institute (NCI) joined the panel.
Mental health resources are not just for the individual living with a rare disease — caregivers, parents, siblings, friends, and the entire support network are impacted by the shock and trauma that is common with a rare disease diagnosis. The well-being of the whole family is often not considered or unappreciated: several attendees expressed that caregivers are left alone while physicians, social workers, and their loved one’s medical teams give no mental health referrals or direction for them when they need it most. Some shared that patients might even be condemned for seeking mental health help.
Speaker Insights
Ms. Thomas focused on the importance of the creation of a safe space to talk for patients and caregivers – people dealing with the blow of a rare cancer need an outlet to be validated, heard and expressed, it’s part of the healing process. She also noted, “mental health and grief are not rare, so there are a lot of resources in your community to tap into.” Some of the valuable NETRF resources include the For Patients page which includes sections on Find a NET specialist or support group, Newly Diagnosed, Living with NETs, and an Emotions section which includes Managing emotions, Finding Support, and See how others live with NET.
As an adolescent with a rare fibrolamellar cancer, Wilson-Premo shed light on how the ‘rare’ aspect of his cancer made it even more isolating as he could not relate to others’ standards of treatment. During the Q&A session, attendees brought the caregiver mental health piece to the table and how their loved ones have struggled. Another aspect that the panel stressed was patients’ mental health after cancer treatment. Survivorship is not always a smooth road as you navigate the side effects of treatment like chemotherapy, strive to keep up with school/work demands, and adjust to a “new normal” life with fatigue and other physical changes. Dr. Lockridge stressed that over the past few years, the NCI had begun to focus more on the patient and family burden, what they are sacrificing and what type of identity is found because of sacrifice, the recurrence, and the uncertainty.
Audience Engagement
Allison Robison, an attendee, reflected on another important point for rare cancer and rare disease patients. “Individuals with rare disorders struggle with lack of diagnosis and then diagnosis (if/when) there is one. It is not just specific to one rare condition.” The emotional and mental health aspects of a rare diagnosis or un-diagnosis include depression, anxiety, and living in constant fear of the unknown.
From the audience, Aimee Powell of the Pheo Para Alliance, expressed another concern that the rare cancer community faces along with mental health, “healthcare/availability of resources is not uniform across the US.” This is a major issue for all cancer patients and rare disease patients. One initiative that aims to bridge that gap of resources is NCI’s Center to Reduce Cancer Health Disparities, which is part of NCI’s efforts to reduce the unequal burden of cancer through basic and community research.
Alexandra Folleco, NORD staff member, attended the session and felt very touched by the honesty of all the panelists on this important topic. Having lost her older sister to osteosarcoma, a rare bone cancer, she believes that having an outlet to express grief, both good and more difficult memories, and being able to honor your loved one’s cancer/rare disease journey by being part of a meaningful community are all positive things to engage in. Grief and the pain of watching a loved one go through cancer treatment whether they survived or not, stays with you forever.
Rare cancer coalition members – all patient organizations involved in oncology – expressed gratitude that neuroendocrine cancers had a seat at the table in this session. Rare cancer and rare disease specific organizations should continue to create space for community members to talk about mental health challenges as not everyone has those opportunities and might be looking for additional support, resources, guidance from individuals with their specific cancer/rare disease.
Key Takeaways and Next Steps
Dr. Lockridge shared resources available through the NIH and NCI for young adults with cancer and their caregivers such as The Role of Families and Caregivers of People with Rare Cancers, Coping with Cancer for Young Adults, Caring for Children with Cancer, and more resource pages. Dr. Lockridge also mentioned the NCI My Pediatric and Adult Rare Tumor Network (MyPART)’s Natural History Study of Rare Solid Tumors which includes how to take part in the study. NCI’s efforts to collect patient-reported outcomes is critical to better understand the mental health needs of young adults living with cancer and continue to drive research on mental health.
Healthcare should strive to be patient and family centered, which includes valuing and considering mental health care support for the patient and family. Geriatric oncology and mental health issues are an area that is often overlooked by providers and care teams as well. When cancers are not as progressive, treatment is not as aggressive, and geriatric patients are approaching an old/end of life age, their mental health concerns are often disregarded and not taken seriously. Read more about Finding Well-Being Where Cancer and Aging Meet.
