During the study time period, 29 patients underwent pancreatic resection for PDAC. Patients were excluded if they did not have up-to-date contact information (n=6) or did not speak English (n=1). Interviews were completed with 18/22 (81.8%) participants eligible for inclusion. Most interviews were performed with patients (n=16, 88.9%). Two patients had died prior to study eligibility (deaths at 1.2 and 5.0 months from resection), and their next-of-kin were interviewed about their experience. Most participants were male (n=13, 72.2%) and median age at the time of resection was 71.6 (Interquartile Range [IQR] 66.1-75.3). Fourteen patients underwent PD and 4 distal pancreatectomy (DP). Interviews took place at a median of 18.9 months (IQR 15.0-20.7) from pancreatic cancer diagnosis and 14.2 months (IQR 11.6-16.3) from pancreatic resection. Three patients developed recurrence prior to their interview date (at 2.9, 4.3, and 16.4 months from resection). Interviewed patients did not differ significantly in treatment or oncologic outcomes from all patients who underwent pancreatic resection for pancreatic adenocarcinoma at the time of study recruitment (Table 1).
PHYSICAL RECOVERY FROM SURGERY:
Some participants felt surgery had no negative effect on their lives and reported feeling remarkably well through the perioperative. Participant 01 stated “it was sort of a piece of cake.” However, most participants described a period of difficulty following surgery. The most frequently reported complaints were fatigue, low energy, weakness, and digestive symptoms (Table 2). Digestive symptoms included bloating, loose stools, anorexia, and weight loss. Pain was rarely a major complaint, and most participants denied having significant issues related to pain beyond the first 1-2 weeks after surgery. Other physical complaints, including fevers, itching, jaundice, or problems with concentration were rare.
This initial period of recovery varied between participants but was typically 6-8 weeks long. Most participants described a slow, but gradual recovery during this time period, with participants judging their experience of recovery primarily by their change in activity level and appetite. While most participants did not recover to a point where they felt their health was equivalent to their preoperative health, they did report getting to a point where their QOL was acceptable to them. Participants frequently described how they altered their lives to accommodate their new, persistent symptoms. This included avoiding certain foods, changing routines to avoid prolonged periods of activity, or limiting social interactions based around meals. Participants frequently described getting to a “new normal,” a way to function day-to-day and maintain an adequate QOL while accepting the alterations in their bodies and lifestyles. At times, these ongoing symptoms were life-limiting; however, participants described an acceptance of their new normal as an acceptable price to pay for the opportunity to prolong life.
Participants who experienced complications described a delay in getting to this new normal; however, at the time of interview, these participants did not report experiencing life in a substantially different way than those who did not experience complications. Next-of-kin interviewed on the experience of the 2 patients who died within 6 months of surgery described a period of prolonged suffering. These 2 patients experienced significant pain, anorexia, persistent vomiting and diarrhea, and profound weight loss which persisted for the entire time from surgery until their deaths. Both spent a significant amount of their remaining days in a hospital or rehabilitation center after surgery. Family members of both of these patients reported doubts over whether surgery was the correct decision for their loved one.
THE MINDSET OF PEOPLE LIVING WITH PANCREATIC CANCER AFTER SURGERY:
Participants recalled very similar reactions to first receiving their diagnosis of pancreatic cancer. Nearly all participants described intense fear and anxiety when learning about their cancer diagnosis. They noted the stigma that pancreatic cancer carries of being “a death sentence.” This fear was near universal, with no differences noted between participants with different cancer stages or initial treatment approaches (Supplement 2). Over time, the majority of participants became accustomed to their diagnosis and were able to lead lives without constant fear or anxiety. Only a few participants commented on having persistent feelings of depression or anxiety, feeling as if something was hanging over them, or feeling unable to plan for the future. Anxiety was increased around the time of surveillance imaging, assessment of tumor markers, and doctor’s appointments in general.
Participants’ mindsets varied widely following diagnosis and they reported multiple different responses to living with cancer, including acceptance, denial, depression, and positive thinking (Table 3). Other participants reported approaching their cancer diagnosis as a fight, and used this type of thinking to motivate themselves as they approached surgery, surgical recovery, and adjuvant therapies. For almost all participants, their mindset evolved significantly throughout their time living with cancer and undergoing treatment (Table 4).
While participants had different coping mechanisms for living with pancreatic cancer, they were unified in the belief that the choice to undergo surgery was the correct decision. Participants, regardless of outcome, had no regrets about the decision to undergo surgery. Even the patients with significant, life-limiting symptoms or early recurrence were satisfied with their decision to receive surgery (Table 5). Family members of the patients who died from their disease or complications of their surgery reported that their loved ones did not regret undergoing surgery. Quantitative data was congruent with qualitative findings. Of 11 participants who completed the DRS, 10 had a DRS score of 0 (no decision-regret), and 1 had a score of 10, demonstrating a high degree of decision-satisfaction.
Participants reported their high degree of satisfaction came from the opportunity to continue their lives. While a couple participants mentioned they wanted to be alive to see a grandchild get married or graduate from college, most participants were not focused on living to see a certain event or check items off of a bucket list. Participants described everyday life as precious and valued any extra time as valuable. Descriptions of participants typical days focused on finding enjoyment in mundane activities, “a nice cup of coffee,” “just laying back,” “housework or sewing or cooking or whatever,” and “just my regular routine.”
The opportunity to have more time to spend with friends and family was also mentioned frequently as a reason for high decision-satisfaction. Nearly all participants reported that their relationships with family and friends were strengthened following their diagnosis of pancreatic cancer. For some, this came from increased physical and emotional support during medical and surgical treatment. For most however, this increased appreciation came from a change in patient mindset, values, and priorities. Participant 02 stated, “It hasn’t affected anything except me being more aware of my great friendships and loves and families. You don’t get to say that stuff so often…, it’s just better for that.”
PERCEPTIONS ON MEDICAL CARE AND COMMUNICATION
Participants reported different levels of satisfaction with the information they received preoperatively. Participants were generally satisfied with the amount of information they received on the topic of overall prognosis, including conversations on goals of care and the risk of recurrence or death from disease. Participants also remembered a large portion of their conversations with their surgeons being technical, describing the surgery itself. The one area where participants routinely wished they had more information was the details of what recovery would look like – not the hospital stay and first 2 weeks, but what life would look like 6 months postoperatively. Participants wanted more information on how their lives would change following pancreatic resection. They wanted to know that their digestion, bowel movements, and energy levels would likely not return to normal after surgery.
More detailed information on life after pancreatic surgery would not have changed the decision to proceed with surgery for participants. They did report that they would have felt more prepared for what was to come however. Regarding decision-making, most participants felt like they did not have much control over the decision to proceed with surgical resection. They reported that their surgeons tried to involve them in decision-making and allowed them to have the final say in what treatment course they pursued, but most felt like there wasn’t truly a decision to make. Either they felt like the decision to proceed with surgery was a “no-brainer,” as the alternative was certain death, or they were so overwhelmed by their diagnosis and all of the information they received that they simply followed orders from their doctors about what to do. Overall, despite the caveats mentioned above, participants were overwhelmingly very satisfied with the conversations they had with their surgeons in the preoperative period.
There was little correlation between participants’ responses to the CPS and SDM questions and their interview responses (Table 6). Responses to both surveys fell within a narrow range. SDM mean responses per item ranged from 3.9-5.0. CPS responses were all either B, C, or D. These responses did not consistently match with participant comments.