WASHINGTON, DC—A patient, neuropsychologist, and social worker explored the mental and emotional effects of rare cancers on patients, their families, and other loved ones during a session at the National Organization for Rare Disorders’ Rare Disease and Orphan Products Breakthrough Summit.

The discussion, facilitated by John Hopper, president of the Fibrolamellar Cancer Foundation, and Jim Palma, executive director of the Target Cancer Foundation, also delved into the mental health needs of patients with rare cancers.

Patients with rare cancers often receive a delayed or even an incorrect diagnosis, and biopsies can not always guarantee what type of cancer someone has, especially for cases of rare cancer. Many patients may be seeing doctors who do not have experience with rare cancer or may have never even seen it before, Palma said.

“Many rare cancers have no established standard of care or really any established treatment plans. Treatment plans are extrapolated from other types of treatment from other forms of cancer,“ Palma continued. There’s generally a lack of clinical trials, which are ideal for developing treatments, he noted.

“Genomic profiling is incredibly important, especially in rare treatments, but many patients aren’t aware of the importance of being tested if many doctors aren’t offering it,” Palma added. “All of this rolls into the general isolation that people feel when diagnosed with a type of cancer that they have never heard of or they may not know another person who has it.”

Keilan Wilson-Premo, chief executive officer of Youth Buddies, shared his experience after having been diagnosed with a rare cancer at a young age, including the toll it took on his mental health.

“My cancer manifested in many different ways and much more difficult to deal with than the physical disease was the emotional, spiritual, and psychological problems. It disrupted my relationships, and it was hard to talk about it. There weren’t a lot of people that understood, especially with a rare cancer specifically,” he said.

“We take a rare cancer that no one knows, but each case is a different can of worms, so not only am I isolated in the cancer community as a young person, which already is a challenge, but then you add the rare on it. I go to cancer support camp, and everyone has standard treatments, standard protocols, and there are lights of hope there. I didn’t have those things.”

Wilson-Premo noted that the experience also affected him academically because he was often taken out of school to undergo treatments. “I can’t even go and learn things like basic algebra because I have to go and do cancer treatments, and everybody else is building a plan for the next 10 years, and I can’t even imagine if I’m going to be alive for the next 2,” he continued.

Many of the treatments for the cancer contributed to anxiety, depression, and post-traumatic stress disorder down the line, Wilson-Premo said.

Cancer and rare diseases often cost dreams, time, and family planning, all of which are just not topics of conversation with your oncologist, noted Robin Lockridge, PhD, a clinical neuropsychologist at Leidos Biomedical Research and the National Cancer Institute. Over the last few years, the National Cancer Institute has begun to focus more on the patient burden and family burden, what they are sacrificing and what type of identity is found because of sacrifice, the recurrence, and the uncertainty, Dr. Lockridge added.

“After a cancer diagnosis, everything changes. Particularly with rare cancers, there are those added layers of isolation—“no one knows about this,” “no one has ever known about this,” “who can I talk to?” It’s really unsettling for both the provider and the patient,” she said.

Instances of misdiagnosis and delayed diagnosis often chip away at the patient-physician relationship, she said.

“It’s important that we make space and start talking about emotional responses to this disease, and we integrate it in the work that we are doing . . . and normalize conversations around emotional wellness and mental health,” said Jessica Thomas, LCSW, director of patient education at the Neuro Endocrine Tumor Research Foundation.

“I think that’s one of the first things because if you don’t know how to talk about it, you don’t know what resources to attach to it or how to help someone, and when I think about rare diseases and rare cancer, I think about the constant of interchanges of grief that happen throughout the course of the illness,” she added.

Mental health and grief are not rare, so there are a lot of resources in your community to tap into, Thomas noted. The psychologist, therapist, and social worker may not be able to speak to the disease, but they may be able to speak to some of the hallmark themes of what is going on, she noted.


Mental health and rare cancers. Presented at: National Organization for Rare Disorders’ Rare Disease and Orphan Products Breakthrough Summit; October 17, 2022; Washington, DC.