2. The Real Man's Prostate Cancer Journey
Choosing your route...
Making a choice on treatment is particularly difficult at any stage of prostate cancer - either because choices are restricted or because there are a lot of them. Clearly men want what is ‘best’ for them, but it is commonly the case that what is best is not known and a patient has to choose. As things are so uncertain in this area, it is as if a man with prostate cancer has to choose against a set of criteria that he has first to define for himself. This is where the significance of communication really emerges.
20% of men did not feel it was clear which treatment choice was best for them.
This will always be a problem until scientific evidence emerges on the relative effectiveness of different treatments. Until that occurs, men will need much more support in deciding which treatment is best for them.
15% of men did not feel they had made informed choices. This is not a good result, but we do not have to await a body of evidence to change that situation. Information and communication would go a long way to reduce this total.
A man ...identifies the problem
In other forms of cancer, the decision are generally clear cut and out of the hands of the patient. This is not so with early prostate cancer where the decision is passed to the patient. To cope with the shock of the diagnosis plus having to make an informed choice of treatment is a terrible burden to carry. I was only offered the chance of talking to a radiotherapist when I rejected surgery. Both a urologist and a radiotherapist should be part of the initial process of decision making then the patient can obtain a balanced view and a clearer understanding of the choices and why.
...says this would help
A full and frank discussion with an informed health professional who is not pushing a particular treatment to the exclusion of all others.
...says this would help
The excellent Tool Kit [produced by The Prostate Cancer Charity] may have helped me in the early stages following diagnosis [he got one later] had I not had such good service from the urologist surgeon, and oncologist all of whom spent considerable time covering treatments and side effects. Not all patients may be so fortunate and would benefit from having the Tool Kit immediately on diagnosis.
...says this would help
There should be clearer recommendations as to treatment. ‘Patient Choice’ is frightening. I personally dithered for several weeks.
...says this was missing
To be made more aware of choices/treatment. I had to find out different choices myself. I chose brachytherapy - no one I saw could or would tell me what treatment was best for me. All said it was up to me to make a choice.
...says this was missing
Much more help and guidance is needed on understanding the cancer and the treatments available. There’s too much emphasis on surgery in thei nitial stages and causes great anxiety.
...don't bully him
I saw the senior consultant who appeared to be under stress and short of time. My impression was that if you lived in [town] your treatment was radiotherapy and 3 monthly Prostap injections. When I mentioned a preference for brachytherapy he ridiculed the idea, although I quoted the success of the treatment, lack of side effects and short operation.
...don’t muddle him
After initial diagnosis meeting with consultant I saw two different doctors following further PSA tests. First one said I should seriously consider having treatment very soon. Second said basically no decision needed and why undergo treatment with the possible side effects. It was hard enough making a decision without doctors giving contrary advice.
15% of men did not feel their specialists made them aware of the treatment choices available.
24% of men did not feel that the hospital specialist or nurse gave them enough information about the treatment choices available
No one mentioned the use of decision aids. We did not ask about them in particular, but it is clearly a matter of major concern that men are trying to pick a route along a particularly hazardous road, using only a sense of direction rather than a map and some directions from someone with the right information.
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