UPDATE - Issue 39 - Winter 2010
Patient stories: Prostate cancer – a widow’s perspective
It is clearly important that men understand the need to look for warning signs of prostate cancer and undergo regular tests as women have done for breast and cervical cancer for many years; it is part of our lives and no one should feel embarrassed or secretive about it. Most men are too shy to even discuss it. Why is it that more column inches are devoted to breast cancer and the charities that are linked with it than prostate cancer? My husband’s wellbeing was as important to me as mine was to him. A recent survey has suggested that more men than women die from cancer. If that is correct it may relate, in part, to the reluctance of men to check out symptoms and undergo screening tests. They need to understand also that PSA tests are only part of the picture and that physical examinations may be necessary too.
But it is not just awareness amongst potential sufferers that needs to be raised; we also need to raise awareness amongst doctors as to how to deal with patients – and their families. I understand that there may be mixed views within the medical profession about the efficacy of PSA tests. A friend’s request to his general practitioner when he asked for a PSA test for insurance purposes was met with ‘Do you really want to know when you are going to die?’ He was diagnosed with inoperable prostate cancer 18 months later. I have seen quite different approaches by consultants. When my husband (who regularly had PSA tests) was diagnosed with prostate cancer he was not offered surgery, which puzzled both him and me for quite a long time. There was a reason for that: he had bone metastases. But no one explained this to us (or why surgery was not an option) until well over a year later when his treatment was transferred to a different consultant who arranged for us to receive a copy of a bone scan report and carefully explained to us the implications. Neither of us had seen this document before and my husband’s general practitioner told me he was unaware of the bone condition until six or seven months after the scan took place. (When my husband’s care was transferred, the entirety of his file was not sent to his new consultant).
No one explained the effect this would have on his body and on our married life
My husband was prescribed hormone treatment. No one explained to him (or to me) the effect that this would have on his body and on our married life. The knowledge that he had a serious illness was bad enough without having to cope with the embarrassment for him of seeing the dramatic changes to his body that resulted from that treatment. Had I known, it would have helped me to help him. No one told us either about the effect of the treatments on bladder and bowel habits or indeed what signs to look for. No one prepared him or me for the situation where incontinence pads and plastic sheets would appear on the shopping list and the extra washing that would be involved. (I have been told the same by others.) This occurred in the face of my asking his first consultant what I could do and the only advice I received from him related to diet. I am not alone in thinking that prostate nurses should be available, like breast care nurses, to help patients and their families with these sensitive issues. A carer’s health can be affected too.
But it is informed advice that we need. A couple of months before my husband died, the press announced the trials for the ‘wonder drug’ aberiterone. The announcements, widely publicised in the press and on the internet, had a deeply concerning effect upon my husband who was faced with understandable and well meaning pressure from members of the family to travel abroad for treatment when his caring consultant was unable to obtain the drug on compassionate grounds. We both knew that he could not travel – he could barely walk to the toilet – and his last weeks, which should have been spent peacefully, receiving good palliative care, were marred by this; at times he was reluctant even to answer the telephone. I hope that aberiterone is the miracle it is proclaimed to be, but we must remember that the tests carried out so far are very small in number and that not everyone can be cured. The medical profession, excited though they may be by the results of such trials, must be cautious (and realistic) when publicising them. False hope is not the wreckage to cling to.
The author wishes to remain anonymous.