Table 3 Major themes and perspectives

Bowel function

“I thought maybe I will be held back by having to go to the toilet ten to twelve times a day. So I would not be able walk the dog for an hour or so. Or I would not be able to go out of the house. I would be crazy to want that.” [patient 9]

“I do not think they immediately dwell on the thought now I go regularly and later on four to five times a day. I do not think that is on their mind.” [healthcare provider 4]

“I could not really assess it beforehand. I could not imagine what it would be like. […] I thought it would just be some stomach cramps, or going to the toilet a bit more frequently. I could not have imagined that it would be present throughout the day.” [patient 6]

“Patients often wonder what it will be like after surgery. How often do I need to go to the toilet? Will I be incontinent? If I’m in the car will I be able to stop in time? That is really on their mind, bowel function.” [healthcare provider 8]

Ostomy

“What does it mean when you have an ostomy, it must have a big impact on your life. Look, eventually you will learn to live with it, but the initial phase will still be a lot of hard work.” [patient 1]

“Of course, patients are reluctant to have an ostomy, are afraid so to speak. But that is mostly the association they have with it, a bag of poop.” [healthcare provider 1]

Tumour recurrence

“In the end it is all about probabilities, debating these probabilities is something you have to do yourself. What are my chances of recurrence, what if it goes wrong and can I live with that outcome.” [patient 4]

“What strikes me is that when patients actually hear the numbers on the risk of recurrence and lymph node metastases, that they often think well that is not too bad. While we (healthcare providers) are making a big fuss about a few percent more or a few percent less.” [healthcare provider 1]

“I think that most patients think, one percent of additional risk is already a lot when we are discussing cancer.” [healthcare provider 2]

“Oncological outcomes are the most important” [healthcare provider 10]

Survival

“No, life is too beautiful to take risks.” [patient 4]

“I think they just generally care about surviving the cancer.” [healthcare provider2]

“I never thought of that (the risk of dying), that did not influence my decision.” [patient 10]

Treatment related complications

“I didn't ask about the complications of the operation in detail because the doctor told me that they had gained experience with this operation. The doctor told me: we can do it well, you shouldn't underestimate it, but we can do it well. So it didn't sound so threatening. And for the radiation, I actually hadn't heard that much about complications. Those were not stressed and therefore I assumed it wasn't that bad either.” [patient 8]

“It depends on the information that is given. But if you tell them what can happen during an operation, they always say: oh dear that is a very big operation. So I think they debate the risk of complications.” [healthcare provider 6]

“I find that difficult, to physicians it is extremely important. But patients often tell me: of course I understand that surgery is not without risks. I don’t know if it influences their decision-making.” [healthcare provider 1]

Work and leisure activities

“And on top of that I have a pottery next door, I taught. I lived alone, a lot of practical problems would come my way when I would have an operation.” [patient 3]

“I took complete care of my husband […] and because of that I actually didn’t have a lot of time to recover and I thought with surgery I am in the hospital for a while.” [patient 1]