2. The Real Man's Prostate Cancer Journey
The Map - Information
Lots of information at diagnosis - the consultant should outline all options and the long term prognosis. I felt lost and alone and thought I was going to die soon! A list of questions at that stage would have helped me.
When it was explained to me that the tests were positive, the consultant went to great pains explaining symptoms, treatments etc. However things such as PSA levels, Gleason Levels, etc he probably did tell me, but if he did, I did not absorb it. It would be very helpful if the consultant had a leaflet with a brief description of what’s what. I am very grateful, but I do wish the consultant could provide something written, otherwise at such a stressful time, the information is not absorbed no matter how patient the consultant is being.
- 16% of men did not feel the information given to them was easy to understand
- 18% of men were dissatisfied with the information they were given
- 19% of men did not feel they had received a full explanation of the side effects they might experience as a result of treatment
This is disappointing.
Side Effects
In the recent National Audit Office report, ‘Tackling Cancer: Improving the Patient Journey’ published in February 2005, 11% of men with prostate cancer felt they were not informed about the side effects of treatment.
Easy to obtain advice on incontinence following the operation, with the hospital being more geared up to handle the problem.
[One man wanted] more information on the side effects after the operation and after the catheter is removed regarding what is available to help manage leakage.
It would have been an enormous help post operatively to have had made clear the possible after effects and the time it would take to return more-or-less to normal. Absence of this information (and the drug effects on my memory and concentration) would have prevented some concern.
Some men have difficulties with leaking urine. Of the men who expressed a view 23% reported getting no support from health professionals to deal with this, and a further 24% reported getting ‘some, but not enough’ support - thus 47% of the men with continence problems felt inadequately supported by health professionals.
More information about what to expect after treatment. Impotence and incontinence are very hard to deal with. I had no idea that treatment would be so difficult and traumatic. I am still quite incontinent after 8 months. It has been a hard time!!
Some men have difficulties with achieving erections. Of the men who expressed a view 35% reported getting no help from health professionals to deal with this, and a further 21% reported getting ‘some, but not enough’ help - thus 56% of the men with difficulties with erections felt they were inadequately helped by health professionals.
Some men have difficulties with their sex drive. 51% reported getting no support from health professionals to deal with this, and a further 20% reported getting ‘some, but not enough’ support - thus 71% of the men with problems with their sex drive felt inadequately supported by health professionals.
The sex part is hard for me to talk about.
Some men have problems with their bowels after treatment for prostate cancer. 29% reported getting no support from health professionals to deal with this, and a further 24% reported getting ‘some, but not enough’ support. So 53% of the men with bowel problems felt inadequately supported by health professionals.
Not all side effects from treatment can be resolved, but it is important that health professionals ensure that all men are supported to live with them as best they can. This is an area of patient support that can clearly be improved.
Key sources of information
The urologist was identified as a key source of information for many men. When asked: “Who was ‘most helpful’ in providing you with information aboutthe disease and its treatment?” the top five - at diagnosis - were:
| Top five [of 11] | At diagnosis | % of men responding |
| 1 | Urologist | 40% |
| 2 | Cancer specialist | 15% |
| 3 | Specialist nurse | 14% |
| 4 | Charity/helpline | 14% |
| 5 | GP | 9% |
Obviously, these responses are dependent on the particular configuration of services available to the men, and also on the health professionals they are likely to come across. This table should not be misinterpreted as a simple ranking of “Who is best?”
Over time, the ranking changes. Input from the urologist is clearly still of great value, but as treatment decisions are being made, the value men attribute to different sources of information does shift. However, the proviso on the previous table is still relevant in this one:
| Top five [of 11] | In the three months immediately after diagnosis | % of men responding |
| 1 | Urologist | 24% |
| 2 | Charity/helpline | 23% |
| 3 | Cancer specialist | 21% |
| 4 | Specialist nurse | 14% |
| 5 | GP | 6% |
What was important information?
In general, men thought all types of information were very important and they were reluctant to identify any as less important. Very few men thought any of the information categories were completely unimportant. However, it is possible to rank the information by how often ‘very important’ was ticked.
The top four items most important to men were:
- Warning signs when cancer gets worse
- Prostate cancer in general
- Monitoring of prostate cancer
- Treatment choices
One cannot make plans if one doesn’t know the timing of progression of the disease.
I think it would be helpful if I was told of the progress of the cancer and how successful the hormone therapy is in its control.
Other issues with information - the PSA test
As is commonly acknowledged, the issues surrounding the PSA test and its role in setting men off towards a diagnosis of prostate cancer are particularly complex. In this survey, many men had some kind of urinary symptom as a first prompt to action and had presented to their GP as a result. Many had their first PSA test at this time.
- 21% of men didn’t even know they had had a PSA test, or had ‘no’ understanding’ of it when they had their first one
- 40% of men had ‘not enough’ or ‘no’ information about the PSA test when it was first carried out
A smaller number of men had actually heard of the PSA test and had presented to their GPs to request one, in the absence of symptoms. Under the Prostate Cancer Risk Management Programme (PCRMP) launched in September 2002, GPs were given guidance on how to advise and counsel these men. The Programme recommends three steps that GPs should follow:
- give the man a sheet of written information
- discuss the risks and benefits fully
- and then if the man still wishes to have a test, go ahead and perform it
From the small group of responses from asymptomatic men, it does not seem that the PCRMP is being applied in this way. Only just over a third of men were advised in accordance with the PCRMP guidelines:
- 36% of men who had asked for a PSA test said their GP fully discussed the PSA test, provided written information about it, and was willing to perform it
However, over 50% of men did not get detailed information:
- 13% of men who had asked for a PSA test said their GP provided written information about the test and was willing to perform it with no discussion
- 39% of men who had asked for a PSA test said their GP undertook the PSA test without discussion or providing information
- and 11% of men who had asked for a PSA test said their GP ignored their request the first time, so they had to return and try again
Other issues with information - the prostate biopsy
- 19% of men had ‘not enough’ or ‘no’ information about the prostate biopsy
- 8% of men were not warned of anything in particular that might happen during or after a biopsy
- 41% of men experienced moderate to severe pain on biopsy with 14% giving it a mark within the range of 8-10 on the visual analogue scale - where 10 is the worst pain imaginable
I was not prepared for the side effects of biopsy.
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