My husband was diagnosed with prostate cancer just before Christmas. Fortunately it was detected early when he was having routine blood tests. He chose to have his prostate removed and is making a good recovery. About 1 in 7 men will get prostate cancer. However, if you have a close relative who has had prostate cancer you are two and a half times more likely to get prostate cancer.
We have a son, aged 35 years who has a severe learning disability. He now has a much higher risk of getting prostate cancer. We have been told that he should be screened for prostate cancer from the age of 40 years rather than the usual age for screening which is 50 years.
Having the prostate removed causes urinary incontinence which can usually be overcome by doing pelvic floor exercises. It also causes erectile dysfunction which may be permanent if the erectile nerves have to also be removed.
Radiotherapy involves sessions every week day for 6 weeks. You have to lie very still in exactly the right position so that the radiotherapy can be targeted accurately.
Our son would be unable to tolerate or comply with either of these treatments. There are other treatments some of which he might be able to tolerate but these are not as readily available. All treatments carry some risk of urinary incontinence and erectile dysfunction. He would also find the side effects of treatment difficult or impossible to cope with.
I was just wondering whether there are any other forum members who have a family member with a learning disability who has had treatment for prostate cancer. If so I should like to hear how they coped with treatment.
I would also like to know if any members have a family member with a learning disability who is at increased risk of prostate cancer, as our son is.
I have tried an internet search but have been able to find only one mention of screening for men with learning disabilities and nothing on treatment of the disease in men with learning disabilities. The problem with the current screening – the PSA test – is that it is unreliable meaning that some men get missed and others get a false positive and have to have a very invasive biopsy to find out whether or not they have got the disease. Work is ongoing to find a more reliable screening test.
You can find out more about prostate cancer here: