2. The Real Man's Prostate Cancer Journey
Communication - Asking for directions
The time of diagnosis signals the real start of the cancer journey - when a man knows for certain there is no turning back:
- The hospital consultant was the health professional most likely to tell a man of his diagnosis of prostate cancer, doing so on 81% of occasions. The nurse or a GP would each do so on 6% of occasions respectively
- 25% of the men who said no one was with them when told of their diagnosis would have preferred to have had someone with them. This is a similar level to that recorded by the NAO ‘Tackling Cancer’ report
- 22% of men felt they were told of their diagnosis with little or no sensitivity. There is no direct comparison for this statistic in the NAO report, but essentially 78% of the men in our survey reported they were told of their diagnosis with ‘some’ or ‘great’ sensitivity, whereas a total of 94% of patients in the NAO report (covering prostate, breast, bowel and lung cancer) felt that they had been dealt with sufficiently sensitively when getting bad news.
We were startled to uncover instances of men being informed of their prostate cancer diagnosis by phone and even by letter. We had not considered that this was a possibility, and it had not appeared an issue in our piloting of the questionnaire, so we had not constructed questions to deal with this eventuality. Some men did not seem to find this a problem. Others most definitely did. It seems to affect a small number, but once the written comments are analysed, we will provide further analysis and observation on this.
As I have stated, the biopsy was extremely painful, and when I was rung by a member of staff on [date] saying ‘yes, you have cancer’ I was absolutely stunned.
There is, of course, a difference between information and communication. Good health professionals readily acknowledge that information is key. Excellent health professionals know that their patients are individuals. They realise that communication is essential because their patients are individuals - with different priorities, responsibilities, family background, medical history, ages, and attitudes to risk. No ‘one size’ decision will fit all.
For some health professionals, confining their interests to information leads to an ‘empty vessel’ model of information dissemination. The patient is ‘empty’ and needs filling with what the health professional feels is important. Communication is the vital other aspect of this important area. Communication is a bridge. It allows the man to ask about what he wants to know, put his point of view, bring his opinions, experiences and social situation into the equation, clarify points on which he is not certain - entering a discussion, not merely acquiring information.
My urologist is excellent at communicating and I have every confidence in him - accordingly the management of the problem is easier
- 26% of men did not feel the hospital specialist gave them the chance to decide which treatment they thought was best for them
- 25% of men did not feel that the hospital specialist gave them the chance to be involved in decisions during consultation
- 20% of men did not feel the specialist gave them the chance to express their opinions about the different treatments available
- 15% men didn’t find it easy to discuss their condition with their hospital specialist
Understanding is crucial. I found the time with the specialist nurse in the urology dept was perhaps the best for getting things into perspective and making rational decisions. There was no time pressure: The nurse was there for as long as it took.
All opportunities for information provision and communication are crucial, but it is not overstating the case to say they are most critical at the time men are told of their diagnosis. In our survey:
- 43% men did not receive written information about prostate cancer
- 38% did not get the chance to speak to a specialist nurse about the diagnosis
- 38% were not given the number of a charity/helpline where they could get further information
- 34% were not given a contact telephone number at the hospital to use if they had concerns
Thus, many men did not get a map at the earliest opportunity and missed out on several opportunities to find out more on their own - either from the hospital or any other support and information network that was open to them, had they been told of its existence.
In the NAO report, ‘Tackling Cancer: Improving the Patient Journey’, 34% of men with prostate cancer were given information on support or self help groups. In our sample this result was better, being 40%, but this is a long way below the proportion quoted in the NAO report of 70% of women with breast cancer who get that information.
Emotional Support
The questions on emotional support threw up an interesting disparity. If one really needed a clear indication that all men are not the same, this data might do it. When asked “Who was ‘most helpful’ in providing you with emotional support?” the specialist nurse had the highest ranking around the time of diagnosis and treatment decisions. But the category ‘no one was helpful’ appears consistently in the top five of the eleven possible categories from the time of diagnosis onwards. This may indicate an indirect demand for emotional support which was currently lacking in health services - or in access to them.
When asked a general question about how their emotional needs had been met, respondents said:
| Men felt their emotional needs had been… | |
| Completely met | 22% |
| Almost met | 23% |
| Partially met | 23% |
| Not met at all | 11% |
| I haven't had any emotional needs | 22% |
More than 1 in 10 men were prepared to admit they had unmet emotional needs but paradoxically twice as many - more than 1 in 5, seemed to be denying they had actually had any emotional needs at all.
We have a good support group in [town] and also good specialist nurses.
Given the chance to talk to people who have had prostate problems - preferably two types - those that chose surgery and those that had radiotherapy treatment. To this end I found my urologist and The Prostate Cancer Charity very helpful, and put me in touch with such people.
Lack of support following the op. Breast cancer patients have support. There should be a similar service for men with prostate cancer.
More time with consultant to explore options.
Someone to sit down with you and your wife and talk it all through with you.
Having support, particularly to get information.
I found the urologist a trifle abrupt when being told verbally of the cancer (very businesslike) He was obviously short of time, but a more understanding attitude (beside manner) would have been appropriate. I have never been offered any other help than 6 monthly visits to the urologist.
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