Rare Cancer Survivor and Oncologist Speak About the Cancer Journey and Challenges in the Patient Experience

At only six years old, Fournier was diagnosed with Langerhans cell histiocytosis (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience), a rare cancer that had her experiencing symptoms such as back pain, prolonged constipation, difficulty walking, and a droopy eyelid. Fournier recalled feeling (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience) a lot of uncertainty and anger following her diagnosis. “I think about the feelings my parents and I felt, this burden of navigating this journey alone, [of a disease] we had never heard of before,” Fournier said (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience).

Fournier noted that patient research (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience) can help with the burdens patients with rare cancers face, such as chronic pain, anxiety over costs, and lack of information. Diamond, a healthcare provider attempting to address patient challenges (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience) like the ones Fournier experienced, is researching treatment options and “partnering with patients with rare cancers and their caregivers to help manage the burden (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience) of living with rare cancer.”

“I want to emphasize that, although individual rare cancers are of course rare, in aggregate, they are not rare,” Diamond said (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience). “Probably about one in five individuals with cancer has a rare cancer, so what we learn about a single rare cancer really reverberates to other affected individuals.” 

In his lecture, Diamond discussed  creating a registry for patients with Erdheim-Chester disease. To better understand patients' and caregivers' burdens and challenges, Diamond reviewed focus group and interview responses that revealed that patients reported more than (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience) 60 different symptoms while the clinical team identified just 27. Learning about the array of symptoms helped Diamond better advocate for his patients, but he said that more must be done.

“We need more longitudinal studies to test interventions to help incorporate patient-reported outcomes into trials, more symptom-directed interventions themselves as well as more informational and social support for caregivers,” Diamond said (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience).

“There is hope on the horizon,” Fournier added (https://nihrecord.nih.gov/2023/02/03/rare-cancer-survivor-oncologist-discuss-patient-experience). “We are grateful for the dedicated clinicians and researchers who are adamant about getting us ever closer to a cure.”

As one of the most trusted professions (https://news.gallup.com/poll/467804/nurses-retain-top-ethics-rating-below-2020-high.aspx), oncology nurses are in a unique position discuss their patients’ cancer journeys and advocate for areas of improvement.