'Survivorship', prostate cancer and older men

Submitted by Chris Hiley on Wed 4 Aug 10 - 15:21
in

The National Cancer Survivorship Initiative is rumbling along, part of the Cancer Reform Strategy, the policy prism through which light from the Department of Health and the serried ranks of voluntary sector cancer charities shines on cancer care.

The initiative exists to improve life with and beyond cancer for all survivors. But are the complexities of survivorship approached equally, as they should be, for all men with prostate cancer?

I’m not sure, I’m really, really not sure that they are.

A paper 'Mapping Common Cancers report' roughing out the survivorship research agenda in several cancers, including the experience of men living with and beyond prostate cancer has been put together by a coalition of partners including the Department of Health.
 
The top five priorities specific to prostate cancer are:-
  1. psychosexual needs
  2. support needs of black and ethnic minority groups 
  3. empowering interventions
  4. understanding long term treatment effects as an aid to informed decision making 
  5. follow up and support for men on hormone therapy.
All these priorities could include men over 75 years of age. I  accept that men over 75 are implicity there. But I suggest they probably won’t appear when any research proposals are chosen and rolled out – particularly in psychosexual needs - as this age group is not mentioned in the detail that appears under any of the points.  The default notion is thinking of 'younger men' as 'the men' and not thinking of older men at all. 
 
I particularly like the idea of researching ‘empowering’ interventions. Why is this not identified as particularly important research in older men? That area could have the greatest impact as older men would have the most to gain. Their self management of prostate cancer is much more likely to be against a background of other complicating co-morbidities. So why miss them out, then?
 
'Real world' research ambitions would spot that older men with prostate cancer may have four or five other co-morbidities - Parkinson’s, heart failure or hypertension, for instance, where self management skills could significantly improve the wellbeing of an older man. 
 
If this doesn't happen, and it won't, it'll be because the construction of the 'Survivorship' research agenda was lead by a prostate cancer organisation - naturally disinclined to pay attention to competing areas of need in older men.
 
So much for the rhetoric of person centred care and the 'honest broker' role claimed by single issue health charities.
 
By the way, just where are the geriatricians, gerontologists and geriatric oncologists in all of this 'Survivorship' agenda? They aren't there, as far as I can see. Why not? Most men with prostate cancer are over 65. Increasing age is a risk factor for prostate cancer - so medical expertise across all aspects of older age, not just prostate cancer will be useful. 
 
Then there are some other research areas the paper suggests - including anxiety and depression, support needs of men on active surveillance, partners’ needs and work, finance and social care. Gay men, single men and, as already noted, men from BME communities are all specifically mentioned.
 
Quite right. I agree. But why not older men, then?
 
Finally, the paper identifies some issues considered to be generic cancer ones. 'Age and access to services' comes top of that list. Calling access a 'generic' cancer experience means shoving it to the back of the cupboard. It's a bold assumption. It’s amazing what you don’t find if you don’t take a look. Can you really separate age from prostate cancer when that's one of its defining characteristics? The mean age of death of men with prostate cancer is the highest, by five years or so, of all the cancers. That sounds very 'particular', not 'generic' to me. That fact, along with rampant ageism means it is much more likely that access to services will be an issue in particular in older men with prostate cancer.
 
Even if genericism is the right assumption who, then, is going to investigate older people with cancer and access to services? Is it only Macmillan who will take this on? I hope the single issue charities will check on access to services, just to see if the 'right' proportion of old men with prostate cancer are found in the right range of waiting rooms with access to the right range of services.
 
I am not sure that work and finance is the right research priority in prostate cancer either. On two counts. Firstly - Surely that is a 'generic' cancer problem? Secondly - If it's not generic, where’s the bit about pensions? Only 24% of men of working age are diagnosed each year with prostate cancer. So when 76% of men are diagnosed beyond pensionable age, after their incomes have plummeted at retirement, and pensioner poverty influences cancer outcomes why is their financial situation not of research interest?
 
Weird? No. Not weird. Ageist.
 
I could find no mention of gender issues. Why on earth not? The 'Survivorship' research agenda likes prostates but not age and ignores men and masculinity except in relation to sex which suggests a simplistic understanding of maleness. We know men and women approach health differently. We know men and women experience it differently. And health service delivery isn’t gender sensitive, even though it’s supposed to be. At older ages more men have respiratory disease and more women have mobility problems. Does that difference and others like it really not affect survivorship with prostate cancer?
 
Good luck with the leap of faith that it doesn’t. 
  
It would be instructive to unpack some expert  qualitative method and start wondering about old men with prostate cancer. I’d love to do some interviews in men over 80, over 90, to firm up what prostate cancer means to them, how it affects them, how it fits with any other health issue they have.  What do they believe about cancer and how does prostate cancer fit into that? It will, I think be quite revealing as they are the ones who are doing the dying. They may be fatalistic, resigned, or stoic or believe their time has come and have crashingly low expectations. Fine. But they decide that themselves. We don’t decide for them and suspend interest at the outset.
 
And if they aren’t being killed by prostate cancer, they may be worrying to death about having it, and the NHS won’t be helping them with that, will they? ‘You’ll die with it, not of it’ may be the most brutal phrase ever uttered to a men with cancer. And it may also justify any amount of off-hand or non-existent care. Or care delivered from the health professionals’ assessment of its significance, with no regard to the meaning that each man gives it.
 
If we don’t know - I assert that we don’t - about how older men experience prostate cancer, we won't be finding out much about them through the 'Survivorship' agenda as currently defined.
 
How many men over 80 had input into it?