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Table 2 Themes and exemplar quotations

From: Patient experiences living with pancreatic cancer risk

Theme Subtheme Exemplar Quotation Participant characteristic
Experiencing cancer risk in the family    
  Grieving “I can never forget this–it’s blazed in my mind. My husband was standing—I had come in the house, walked by him; we were chatting, and he said, “I have something serious to tell you. Your cousin passed away.” Right behind him was my son, who was young. And I just lost it, started crying. I think knowing that it hit our generation, the third generation, it’s very upsetting (crying). …” 60 year old female, familial pancreatic cancer
  Considering own mortality “…my brother and I kind of half-joke about this a lot, we’re not going to see seventy-five, you know, so this sense of mortality is very present lately. I’ve started to almost countdown backwards…I have thirty years, which is different than I’ve lived, so now I’m going to die quicker than I’ve lived…over-the-hill has passed already…” 40 year old male, BRCA2 gene mutation, father passed away at age 70 from pancreatic cancer
  Experiencing fear “My male cousin, first cousin got pancreatic cancer and died when he was fifty three and my aunt…also died at about 78…so it’s just always in the back of my mind… You know, Are we going to die from this? Is this our death sentence waiting for us?—it’s made me very focused on being afraid of cancer in general.” 64 year old female, familial pancreatic cancer
   “I don’t worry about hypertension. I don’t worry about car crashes. I don’t worry about strokes. There’s a false positive that gets created, which is, you know, by being twelve, or fourteen percent likely to die of pancreatic cancer, you get it in your head that you are going to die of pancreatic cancer, like when you’re driving and you focus on a tree, you could go hit it. But the inverse, of course, that there is an eight-six percent chance that you are going to die from something else. And for some reason that isn’t on my mind, and I don’t know why, other than it’s unknown…” 40 year old male, BRCA2 gene mutation
Seeking a way to control cancer risk    
  Wanting to be taken care of “I’m not concerned because I have total faith in the doctors. If the cancer shows up they’ll take care of me…” 66 year old female familial pancreatic cancer
  Approaching health “I try to live healthy, you know? I don’t drink. I don’t smoke.” 62 year old female, pancreatitis
   “So you really do have to live for the day and enjoy it.” 62 year old female, BRCA2 gene mutation, history of breast cancer
   I started exercising—I’m up to once a week—I have lived a sedentary lifestyle… I need to start exercising; I’ve cut back on cigar smoking excessive alcohol. There is a consciousness that if I am only going to make it into my seventies, I want to try to at least be healthy…I don’t want to be decrepit in my sixties if I have only so many years to go. I don’t ever think any of those things are going to help me extend. 40 year old male, BRCA2 gene mutation, father passed away at age 70 from pancreatic cancer
  Avoiding a similar familial cancer experience “… it’s not like a heart attack. You don’t die overnight or you don’t die kind of instantly… it’s a real rollercoaster. And you see them slowly losing weight, and losing weight, and losing weight and just sort of becoming you know so terribly frail and thin, you know really to the point where you know they really are skin and bones. 59 year old female, Lynch syndrome
…I don’t know if it’s somewhat subconscious or whatever that I just seem to feel most comfortable at an overweight weight. I’m trying to pack it on so that I have more to give up as opposed to being the ideal weight, and then getting sick and then losing precious body mass, or organ mass or whatever that at least if I’ve got some extra fat on me then I can burn that off while either I’m trying to get better, or they find a cure or whatever, ifs I can come up with in my brain.”
   “A friend of mine asked me if you have pancreatic cancer what will you do? And I was like right now I’d say that…I’d get a house on the water, and I’ll read and I’ll just enjoy what I got left, watch the sunsets and watch the sun rises. [the friend asked] You wouldn’t do chemo? You won’t do radiation and all? The way I feel right now, no, because I watched too many people go through all of that. 58 year old male, BRCA2 gene mutation
Undergoing PancCa screening    
  Doing something to try and catch cancer early “…if there was ever anything that it (pancreatic cancer screening) would be able to—to be caught early. So that’s—that’s the only—that’s the only hope, right, you can have.” 37 year old female, BRCA2 gene mutation
  Uncertain benefit of screening “I’m comforted by the screening, but what’s the end result of the screening? Am I going to lose my pancreas if something is found? That’s the first thing I said to my brother, well, my attitude was I’m not getting screened if they can’t cure it because I don’t want to know that I have it or that I’m going to have it in ten years or highly likely to if there’s no way to cure.” 54 year old male, familial pancreatic cancer; undergoing screening
  Anticipating results “So around the time of the procedure I start to get a little anxious, like what are we going to learn this year, but once it’s (screening) over …it’s over. “ 58 year old female, familial pancreatic cancer