Hi Trish
My apologies for what has turned into a very long post.
Your husband has potentially more than one cause for his problems and it is essential that these are all logically investigated. It seems that this is, to a large extent, happening.
One has to say that rectal bleeding in a youngish man should always be taken seriously, but is by no means always due to cancer. Whilst he may have a polyp, this may well turn out to be totally benign and basically has given him 'a nosebleed through the rectum'. But a colonoscopy and proper biopsy are the next logical step. Is there any family history of polyps in the bowel - this can be a significant factor - but I am sure your gastro person has been through this already.
It is not uncommon for a man to initially go to his doctor with symptoms of erectile dysfunction and then to find there is a diagnosis of PCa. Sadly, not all GPs think about doing a PSA test in this situation.
His PSA of 3.8 is undoubtedly on the high side for a man of his age. There is a school of thought that PSA screening should take place in all men at the age of 40 - at this age the 'background noise' of normal prostate enlargement is almost zero so that this influence on PSA levels is minimised. A raised level at this age may not be indicative of the presence of PCa but might indicate the men in whom closer surveillance might be needed in the future. These levels of PSA are undoubtedly the ones which give the greatest trouble as they are never, in themselves, diagnostic of PCA. It is one of the major arguments against a national screening campaign for PCa using the PSA test alone.
A proper biopsy is obviously needed for your husband, and doing the MRI scan before this is a very sensible thing. Biopsy alters the MRI image of the prostate and can confuse the interpretation. What is not clear from your post is what sort of MRI has been done. Was this of the whole abdomen, including the spine (because of his back and boney pain) or just of the prostate. Conventional MRI scanning of the prostate is not that good at identifying PCa within the gland - the technique is just not sensitive enough. It is mainly used for identifying spread to the lymph nodes within the abdominal cavity and to aid in assessing the overall classification of the aggressiveness of the disease.
What might be worth considering here is further more sensitive MRI scanning and other investigations for PCa. Many such investigations are not easily available on the NHS in all parts of the country. However, it seems that you may be able to organise this through your private health insurance. Your profile also suggests you come from the London area where there is a plethora of private places offering the investigations.
I would strongly suggest it is worth discussing with your urologist that a more sophisticated MRI scan is done - assuming this is not what has already been done. It is known as a 'multi-parametric MRI scan'. It needs a more powerful scanner and upgraded software than many NHS hospitals have. You also need a radiologist with experience in interpreting these scans. This scan can image the prostate itself much better than the normal scan and can localise much smaller areas of potential cancer within the gland. This MUST be done prior to any biopsy as the biopsy procedure will significantly alter the images of the gland. It can also identify more accurately than trans-rectal ultrasound the areas of prostate that should be biopsied. Some hospitals now use this investigation virtually routinely prior to biopsy and have significantly reduced their biopsy rates because of thei. I think one of the leading hospitals here is Kings College Hospital.
Other potentially useful tests are to repeat the PSA but to measure the ratio of ‘free’ to total’ PSA in the blood. PSA exists in 2 forms – one is found attached to proteins in the blood, the other is just found ‘floating freely’ in the blood. The normal ratio of these tends to be reversed in PCa. This estimation is not difficult to do, bit is not routinely requested on PSA testing. The other test is a urine test – PCA3. This measures the level of Prostate Cancer Antigen-3 which is produced by cancer cells and is the excreted in the urine. It is obviously high in most men with PCa (but one has to say not ALL men with PCa). On their own, neither of these is definitively diagnostic, but may help greatly when looked at alongside all other investigations.
One other fact you do not mention is whether there is any family history on PCa in your husband’s family – father, grandfather, brother etc. As I am sure you know PCa has strong familial links and is 3 times more common if there is a previous family history. Should your husband be positively diagnosed (and let us hope and pray that this all turns out to be a false alarm), then it is very important that his close male relatives are given appropriate advice and testing. It is also becoming recognised that some of the genetic abnormalities often associated with PCa are similar to those found in breast cancer – particularly the BRAC 1 gene. A strong history of breast cancer in close female relatives can also be found in some men with PCa. Not at all diagnostic, but yet another peripheral factor that should be considered.
So, the bottom line here is to hang in there and don’t be afraid to discuss other potential tests prior to a biopsy. I know that you will both want answers ASAP, but it will pay dividends in the end to do all of the right investigations in the right order.
Should the diagnosis come back as being positive then there will be a whole range of potential treatments. It can be confusing initially. Good advice can be obtained from the helpline at PCUK. Equally, do find out if there is a Prostate Cancer Support Group in your area. PCUK should have an up to date list, or similar information can be found from what was originally called the Prostate Cancer Support Federation (now re-branded as ‘TACKLE prostate cancer’). – www.tackleprostate.org I am Chairman of the Reading Prostate Cancer Support Group (www.rpcsg.org.uk) and one of our main aims is to provide advice and support about PCa. We often have men who come to the meetings prior to their treatment or seek advice on the phone. Talking to someone who has been through the same experience is enormously useful. I know this from my own personal experience. Patients now have to be given ‘choice’ in their treatment options – but how does one choose without having some good prior information. Equally it is important to know how people have coped with the 2 major post-treatment problems – incontinence and impotence. Whilst these are common problems, they are by no means always present. But both do gain more importance the younger one is at diagnosis. Pre-treatment discussion about post-treatment strategies can be very helpful. Fore-warned is always fore-armed.
I do apologise at the length of this post, but I do think it is essential that we all share adequate and appropriate information.
Please do remember that treatment for PCa is rapidly advancing. It is by no means a death sentence. Like breast cancer, it has a wide range of aggressiveness. Caught early, the outcomes can be stunningly good with the appropriate treatment. I am now 7 years down the line – diagnosed aged 59. Many of our members are further on that that.
I do know how much of a strain this must be on you both at the moment, particularly with a young family. Quite rightly, you do not want to tell then anything until you know more definitive details. Do talk with others if you can. The pair of you will need some support through this. The PCUK helpline is always there. Support Groups are there. Do beware of uncontrolled message boards which at best can be ‘communal whingeing’ and at worst positively destructive.
Steve Allen