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Table 2 Pancreatic cancer patients repeated issues and focal themes

From: As the bell tolls: a foundation study on pancreatic cancer consumer's research priorities

Recurring issue Focal theme
"I would like to see some work done in the area of symptoms and diagnostic tools so people who have got a problem can hopefully get a quicker result"
"People that have had gallstones and have had their gall bladder out, and 18 months later it's been diagnosed as pancreatic cancer. So it's those sorts of correlations and the diagnostic tools need to be fine-tuned"
"I agree with you ... I had to have a battery of tests to sort mine out, basically because I was pretty sick at the time. I would like to see the testing simplified a bit. I was sick for a couple of months before, but I had to be sick enough to be in hospital before it was found"
"Cancer is the silent killer. By the time I was diagnosed it was too late. "Mine had already moved over to the liver and the spleen and so there was no surgery involved because there were too many organs"
"Early diagnosis would be ideal. I found out when it was too late....
"People need to get to the doctor before it's too late so they can have options"
Early detection
"I first heard of my pancreatic cancer on 18 July when I first went in to see the doctor. He sent me straight for an MRI. I hate him for what he said when I came back five hours later: 5 o'clock on a Friday night I'm a healthy person, I'm lively, I had a life planned to 95, and he told me I would be dead in six to 18 months. I was stunned...... I think what I would like to say here is we must have information presented in a professional form"
"While treatment is happening and I get side effects, the nurses never clarify that it is a side effect. They just send me to my GP and unfortunately my GP is very much like your GP -- I don't get a lot of information. He needs correct information about side effects of different types of treatment and there was nothing"
"Regarding my diagnosis, I believe strongly that the doctor should have been able to refer me, or the next lot of people that it happens to, to a counsellor or to someone who will actually give you a cup of tea for a start. The diagnosis should not be delivered to people like it was to me. "If you were sick for a period of time, you could expect something like that, but it was like delivering a life sentence when you hadn't murdered anyone and weren't on trial"
"I (also) believe that anybody who has been diagnosed with cancer should have their next appointment, as soon as possible, with a counsellor"
"As well as the diagnosis, I was just hit with - you know when you find pancreatic cancer it's usually too late and there's not much that can be done about it. That seemed to be the general attitude. I was in hospital at the time and it just seemed to be the attitude amongst all medical professions, right down from the intern to the specialists"
"Some people want to take part in trials as they want the latest in treatment. Could that be part of an information package with regard to options?"
"I came away and, even in the horror of things, I said to my friend that he sounds like a very good used car salesman. So he offered me one (chemo option) with another three. I asked him what if and he quickly gave me a very short spiel of the risks attached"
Clinical communication
"When someone says they have this cure and I say "yes, but it's only for breast or bowel cancer", which is nothing compared to what I have.... "We need the information out there that it is advanced, unique and aggressive.... I agree with general community awareness because people need to know. I didn't know that the pancreas was so important...."
"We need a central information point, whether its written literature or whatever, that can be referred to immediately"
"Some people might even decide to go overseas for treatment and to try different things. So information is very important. There are many other alternatives and some of them may not be cheap"
"Maybe if people knew what some of the symptoms were, like ovarian cancer, they would go and get checked"
"The other suggestion is the immediate sharing of information. You hear something and you would like to assist and support that person....... I would be only too happy to volunteer my time for so many hours a week to help with that if I could"
Public awareness
"A few of us have had the Whipple procedure, but there are variations within the procedure itself. I know that most progress has been made in America and I'm sure there are various good reasons why there are delays in getting that information here. I wonder whether we can speed up that process or have our surgeons trained more quickly"
"It sounds awful but it sometimes does seem to be the quality of your GP that gets the results quicker too and some of the medical profession not even knowing, so there's a lack of awareness as well"
"I went to the doctor last week and I couldn't get in to see my regular doctor so I just saw one at the local medical centre. I told him I had had a Whipple procedure. He had never heard of a Whipple procedure and this is a doctor"
"There seems to be a lack of awareness with GPs and also specialists even just knowing about enzymes. Some people say their doctor has never mentioned it, and I've spoken to a few people who have had a Whipple procedure"
"My naturopath mentioned enzymes so I'm taking a supplement. That's what I was saying before -- it's either lack of information or people just say to keep eating normally, which is not the right thing to do because everyone is different and people react differently to different foods"
"At no time was I given an option. I have heard from other people that there are different types of medication that may be more costly; however, they were never given the choice to decide to pay for the cost of more expensive medication....... I think it's up to the cancer patient to make a decision as to which treatment is more suitable for them and whether they have the means to pay for more expensive drugs not covered by Medicare or a private fund"
"I believe that we need a coordinated group of people who are, say, oncologists and surgeons and radical people and alternatives"
Quality of care