Table 2 Representatives quotes from main theme content categories

An important decision is needed at a time of emotional upset and uncertainty

Obtaining a definite diagnosis can take time

I had a physical with my family physician and he ordered a PSA test. The test revealed a slightly higher level…I was referred. I think I went through a number of PSA tests and they sort of bounced around, up and down, and eventually reached the stage where Dr. X concluded a biopsy was in order. The first biopsy revealed, out of ten samples, that eight were OK and two were inconclusive. I think we did another one or two PSA tests and it kept rising, which resulted in another biopsy. And this time one of the samples revealed cancer.

Hearing the definite diagnosis is a shock

I felt I’d been hit by a truck.

Why me? Why did this happen to me? And now? What do I do?

Having little information about prostate cancer causes uncertainty

It’s amazing that you don’t really know about prostate cancer until you are diagnosed; like, why would I want to know about it?

I really didn’t know anything about prostate cancer or even what the prostate was…I wasn’t sure what was going on.

Being told it is your decision to make was surprising

He said, ‘You have to decide what you want to do.’ I was, like sort of, ‘You tell me what to do.’ You know? That’s what I found difficult…he didn’t say, ‘You definitely need this or that.’ He said, ‘Well, what did you decide?’ Me, I said, ‘Well what are the choices? What would you recommend?...What would you tell your brother?’

Information is necessary on a number of topics before a decision can be made about active surveillance

Information is needed on prostate cancer, treatment options, expected impacts/benefits, side effects, and active surveillance

For example, I went into the biopsy without any idea what I was going into…you should prepare people better for what’s ahead.

I had not heard about active surveillance before at all…when I first got cancer, and before I read up on active surveillance, I must admit, well, I thought I got cancer, get it out right away. What the hell am I doing walking around with it? It never crossed my mind, I guess I never thought of something growing so slowly that it’s not going to, it will never effect you…but that’s what’s going through my mind a lot now.

There is a need to actively seek information

The first thing I did when I got home was go on the Internet.

You need to explore all the options so when push comes to shove and you need to cross that bridge, at least you are better armed to make an informed decision.

I had really wished there had been a group like this that I could sit down and talk about making decisions. I felt quite isolated, that I had to go out and search for people.

There is a need to check with different sources of information

I talked with everyone I could. It felt like I had all the time I needed to make a decision, and that I could make the best one for me. I just needed to know the options for me and the possible impacts in my situation before I made it.

I did a ton of reading and I spoke to a ton of people who had had it. It didn’t confuse me but it didn’t necessarily help me sort if all out.

It is important to sort out what information is relevant to the individual’s own situation

There is a lot of information out there, but I do not know how accurate it is.

I had to sort out what applied to me, to my disease and situation. It was hard to know just from everything I read and had heard.

Disease status and quality of life are important factors for men in deciding about active surveillance

Various factors are taken into consideration in making a final decision about active surveillance

I took it all into account [the doctor, the reading, talking to my wife]…weighed all the facts, gathered my evidence, all the information, and then made an informed decision.

For me, it was a combination of factors…weighing them out and coming to a logical conclusion.

Understanding of the disease and potential for harm:

 • I was told it was small and low grade…a little level of cancer.

 • They told me it is mild…and that the tumor cells are slow growing…it won’t likely get me before something else.

Understanding of active surveillance and potential for benefit:

 • My first reaction to the concept [active surveillance], which came right at the beginning from the urologist, that’s really doing nothing. So I am not sure that’s the right thing to do…but he laid it all out…and as I researched it, and got into it, it is doing something. It’s actually monitoring in a quite regular basis. I got comfortable with that.

 • It’s not about doing nothing, you are doing something. You are monitoring and going to catch it in time if it gets bigger. I will have time to act.

Side effects of treatment

 • If I could go another 10 years without an operation, I’d feel good about that, about not having one. I’m 67 now.

 • I did a lot of reading and found a lot of negative things about the surgery.

Wanting to be rid of cancer

 • As soon as I found out that I got it, I thought, ‘What the hell, I gotta get rid of this’ cause, you know, in everybody’s mind cancer isn’t good for you.

 • I said, ‘If I got it, might as well get rid of it…get it over with.’

Past experiences with family/friends

 • I have a brother who is 15 years younger than me and he had his prostate removed. His cancer was small too. But he couldn’t live with it…but I can. I’m 64. Maybe if I was younger I’d have had it out too

 • My father had treatment for prostate cancer and his life was never the same again. I didn’t want that for me. I am too young.

Medical opinion

 • I had four doctors that have more or less indicated to me that it is not a major thing [to wait].

 • It was my doctor’s decision. But I was very relieved that I did not have to go under the knife, you know.

 • I am beginning to fear surgery but, definitely, if the doctors all said, ‘Listen, you’ve got to get it out’, I will definitely go for surgery when the time comes, if it happens to come, I will do it.

Age and health status

 • I have sort of decided that I am not going to do anything rash. I just turned 80 so it’s not as if I am in my 50’s. So I decided the best thing is just to go through with it, to do the surveillance.

 • I was more or less on [the idea that] the less aggressive form of action would be better for me right now…postpone as long as we can. Fifty-seven is too young to go under the knife.

 • I am young, I can deal with it [surgery] now and recovery will be quicker than if I wait and do something when I was in later years.

Emotional toll over time

 • Any time you have a bit of an issue you would think, ah, maybe it’s because I have prostate cancer, so I decided to get it out, taken care of at that time.

 • You have to learn to live with the fact you have cancer, at least a little bit of it, and that it may never get you.

 • I decided I don’t want to live with this [prostate cancer] anymore…I am tired. So, let’s do it [treatment].

Family viewpoints

 • My wife said, ‘You need to be treated. I want you to be here.’ But for me, active surveillance sounded fine.

 • But my two daughters said, ‘Dad, don’t fool around with it. Deal with it.’ There was family pressure. So I made a decision to go with radiation, stop what was there.

 • My wife was involved too…it wasn’t just my decision. We are together on that…but she wanted me to be treated!

Not enough information to decide

 • I have read so much and talked to a lot of people, and the information is really not clear. That’s why I am on active surveillance. I feel I don’t have all the information [to decide about treatment].

Disease status is an important consideration/factor for men

Choosing active surveillance

I have no symptoms…it is a very small cancer. It’s not aggressive. So I decided that was the course for me. I would take active surveillance. I am not afraid of dying.

At my age, there’s this notion that one could die before you die of prostate cancer, you die of other causes.

Staying on active surveillance

It’s been 7 years and I feel fine…as long as my numbers are good, my exams are good, I am going to stay on active surveillance.

If I was ever going to have another biopsy, and there were shown major changes in the amount of cancer in the biopsy bits, and if the doctor suggested that well maybe we should consider an operation, I mean that is the kind of information you want to hear to help you make a decision on it.

Quality of life is an important consideration/factor for men

Choosing active surveillance

 • I told him I am not interested in anything of [treatment]. It’s about quality of life…I don’t have symptoms now, so I am going to wait.

 • Treatment is scary, in terms of side effects on things…the side effects of the hormone drug I might have to take are huge. I think with radiation as well.

Choosing treatment

 • If I live for another 35 years, I would like it to be a good quality I don’t want to deal with cancer…me? I would just do it [treatment]. So I said, ‘Don’t wait, let’s just do it.

There is a need to balance what is important to you

Some of these treatments have pretty drastic after effects, ah, you would have to live with them. So you have to weigh it all out.

You sort of balance the things about invasive surgery, you know, and what else is happening to your body from other causes. If you are pretty healthy then you want to stay that way. If it gets serious, then I will think of the alternatives.

You kind of have to figure out what you need for surviving and what you need for quality of life. It just seemed to me that active surveillance gave me options. I did not have a lot of disease and, who knows, if I wait for treatment until I really need it, there could be other things available.

Conversations with doctor(s) have significant influences on men in their decision-making about active surveillance

Conversations with doctors can be helpful or add to a patient’s distress

I talked with the surgeon and really just had one option offered to me. I was not satisfied with that, I wanted to have all of my options explained. So I went to another doctor.

To be frank with you, I had my GP tell me, ‘You know, it’s a long term thing. Don’t worry about it’…he told me not to worry about it. So I am taking him at face value and I am not overly concerned.

So at this point, in talking with two urologists and a radiologist, I’ve decided, well, I think they helped me decide, that the thing to do was, ah, not to do anything too drastic but to maintain surveillance of the growth.

I have to say I was a little apprehensive before I talked with Dr. X and the radiologist…I was quite impressed because they were quite conservative in their approach. That kind of reinforced my thinking because I was a little bit apprehensive about going through any kind of radiation treatment or something like that.

There is no doubt about it, you turn to the physician and depend on what he is telling you what is right for your situation. He can certainly sway you one way of the other.

Confidence and trust are of importance

What persuaded me most was the reaction of the medical staff. They didn’t seem to be overly excited about the whole thing.

I talked with the first urologist and then with two other doctors, and I was sort of reassured. I mean I may need treatment sometime, that may happen, but for the moment I’ve decided to do surveillance

He has high credentials. So you know he knows what he is doing…keeping up to date…pleasant....his reputation. Trusting the doctor is the answer.

This guy has a way of talking with you. He explains. He shows you…but he leaves you, it’s your decision.

I listen to him. I have been with him for more than 11 years. I do what he says, he knows better than me.

I listened to what the doctors had to say. There were slight variations, but not much. There’s some consensus there.

The ideal process from a patient’s perspective allows for tailored discussion and reflection

You have to help people prepare for what they are heading into.

You need to give them an honest appraisal of their status. They can govern themselves…it is important that you let them know it is mild and slow progressing...it is a different type of cancer.

Dissemination of information is very important on a direct basis…you give as much information as you can.

The person [who goes on active surveillance] wants to know, if I go on this regime of just testing every so often, am I at risk? Will it get past the threshold of danger, you now, before we find out?...having time to act if something begins to change, is there time to act? That’s critical. That’s what makes action surveillance safe for us.