In this blog, Cerner Enviza’s Search and Social Intelligence team share the online analysis results of diagnosed cancer patients, uncovering their hopes, fears and feelings.
The ways patients cope with diagnosis, disease, and prognosis are complex and are something life science companies are still trying to fully grasp. That’s why Cerner Enviza’s search and social media intelligence expertise in uncovering patient-led insights can be so valuable. By studying insights provided by the team, our clients in the life sciences field can empathize with patients on a deeper level and adopt a patient-centric approach that places their mental and physical well-being first.
In order to better understand the emotional complexities of a cancer diagnosis, the Cerner Enviza team recently endeavored to discover patient-led insights about the disease.
These patients often connect through social media and healthcare forums via unprompted discussions. Monitoring what patients post and discuss in these anonymized forums can provide valuable insight into patient experience.
Cancer patients discuss feeling like “phonies”
On July 26th, 2022, a cancer patient posted a comment via the subreddit r/cancer titled “Phony cancer patient”, that stated:
“During my treatments I would always joke with the nurses that I was a phony cancer patient since I wasn’t at a high risk of dying or anything like that. I was wondering if anyone else felt like they were a phony while going through your treatments.” (1)
More than 90 posts surfaced in reaction to this question, suggesting a possibly less known and discussed implication unique to patients with cancer; one in which patients with a good prognosis or minimally invasive treatments, described feelings of guilt for not fitting a standard of what is believed to be a “typical cancer patient experience.”
Given that Reddit is an anonymous forum, patients can express themselves more freely – especially from judgement of people they know (friends, relatives or colleagues) – and seek shared common experiences from those who have felt and experienced similar feelings or thoughts.
Upon delving into patients’ stories, multiple reasons pushed those cancer patients to label themselves as “phony” patients; with guilt being a major factor.
Patients discussed not feeling “sick enough” to be labeled as a cancer patient
Patients discussed not feeling “sick enough,” because they had not been diagnosed with the most aggressive cancer types, or they did not experience harsh side effects from treatments.
Patients felt their experiences were misaligned with what they thought was a more typical experience of being sick. Commenters assumed that when it comes to treatments or surgeries, they must either be aggressive or come with certain side effects or complications. If not, they felt they did not belong to this category and labelled themselves as "phony":
“I kinda feel like a phony. I had surgery and it’s anticipated that that’s the end of it for me.
On the one hand, I feel like a phony because I don’t have to do chemo or radiation. On the other hand, I’m angry that I feel “less” because I “only” had to have a major surgery that cost me the ability to have biological children. (Endometrial adenocarcinoma).” (2)
“Thought my surgery was the end of it and felt phony for many years. Then it came back and I only feel half phony. Targeted therapy but no hair losing chemo or radiation. Still making my life a mess but no imminent danger so only half phony.” (3)
Patients with less visible cancers discussed why they felt like phonies
Patients diagnosed with “invisible cancers”, where physical symptoms of treatment or cancer are not visible, felt their experiences and support systems were not the same as those of a “typical cancer patient.”
When patients received probing comments or questions on their appearance or treatment regimens, it exacerbated feelings of being a “phony”. Patients described encounters that made them question the validity of their experiences:
“I feel like since I didn't do chemo (did immunotherapy) and I gained a bunch of weight from steroids no one really thought it was serious. I got no rally of support, almost no one checked in.” (4)
“Definitely felt this and had a family member tell me that. I was “lucky” that all I needed was major surgery and not chemo, but I was still sick for several years during diagnosis and recovery. I definitely feel like a phony and am hard on myself for not “perking back up” as fast as I think I should.” (5)
“When I was originally diagnosed, I was suuuuper obese (…). Well, when I got cancer, started treatment, etc., I ended up losing a lot of weight - but was still quite large. Larger than average and I never really fit into the "sick cancer patient" category by my looks. I've had people flat out say to me "I thought cancer patients got super skinny"... well, maybe some do, but I sure never did! I guess in that way there were times I definitely felt like a bit of a "phony". (6)
Comparisons led to increased feelings of guilt
Patients who cross-checked their experience with other patients with more severe treatments or prognosis, described feeling bad that they had it “easier”. Actively comparing circumstances was a key contributor to feelings of guilt and shame:
“Not necessarily a “phony” cause I’ve got some physical and mental problems I’m gonna have forever now. But I felt bad that my cancer was ‘mild’ compared to others around me. I know people who also had cancer around the same time I did or told me their cancer stories and it was real bad. Some were in the hospital for extended stays, some were unable to walk or eat due to their medications and side effects. And I knew of a couple who unfortunately did not make it.” (7)
“It hasn't been until fairly recently when the side effects have really started to set in that I've actually felt 'sick', if that makes sense? I mean, they always sucked, but they've really ramped up in recent weeks. My hair loss has ramped up, I'm tired all. the. time., and even when I do feel like eating, I can't really taste my food all that much. Even given all that, and with my manager's encouragement, it still felt weird to take an afternoon off the other week because I felt like hell. Because again, so many people have it so much worse.” (8)
The r/Cancer subreddit, which has over 47,000 members, is mainly comprised of posts and stories from patients and caregivers. Healthcare Professionals (HCPs) also occasionally participate in discussions:
“It's not the suffering Olympics” - wrote a nurse in response to patients’ concerns, feelings and experiences on the phony patient thread. “I'm a cancer nurse and I can guarantee none of us think any more or less of patients with more curable diagnoses.” (9)
Understanding what patients post and discuss in anonymized forums ensures we are prioritizing patient-led insights in our research
The “phony patient” discussion covers one facet of patient experience. While each patient’s journey is unique - especially as cancer treatment is becoming more personalized – it is vital that we continue to understand how patient attitudes and coping mechanisms are evolving. Analyzing patients’ unprompted anonymous conversations from social media and specialized healthcare forums allows us to understand key issues of importance to patients, for a holistic understanding of the patient experience.
This analysis was conducted by Cerner Enviza’s Search & Social Intelligence team. Our team is driving the use of research involving social media and Google search insights, in the life sciences industry, to enable better decision-making.
Picture Credits: Pexels | Source of analysis: Reddit