Prostate Cancer questions - get the right answer

When Tom was going for his radiotherapy sessions there was a particular day when he was struggling badly. Not really about the radiotherapy more about whether it would work. One of the radiotherapy team at Clatterbridge who was involved in his treatment noticed he was looking a bit low and asked why? She sat with him encouraging him to talk about his feelings before asking “Have you been looking at the Internet?” Of course he had and ended up scaring himself silly. Very forcibly she told him under no circumstances to rely on information he found online. If he needed information or advice to ask at the clinic. They had his notes, they knew about his treatment, they had the expertise to advise him on his situation or they knew where to find the person to do so.

Whoa you may say, after all this is a blog. Well, I specifically do not give any medical advice, I can’t I’m not medically trained but what I do have is practical experience of the impact of a diagnosis of Prostate Cancer. I know how we learned to cope. I know the mistakes we made and also the best moves we stumbled upon.

Accurate information is essential and it must be appropriate for you. But in the early days, before you get a definitive diagnosis and actually have access to the oncology specialist unit, you are bound to go seeking information. When we visited our local hospital recently we spotted an absolute treasure trove of top quality information in a display of booklets compiled by Prostate Cancer UK. Positioned in the Urology outpatients waiting area, these were substantial documents, readily available for any visitor to a range of outpatient clinics. They covered all aspects of the disease not only for the individual but the family and supporters too. The information is available for download on their website (oops that’s the internet again!). You can see the number of topics separately covered in the collection illustrated here on the right.

I picked up 3 which seemed relevant to us and the blog including "When you're close to a man with prostate cancer", "Prostate Cancer, a guide for men who have just been diagnosed" and "Follow-up after prostate cancer treatment - what happens next?" With the understanding the information is general, all are well written in a simple style with jargon explained. The information given about the disease and its potential emotional impact on you and your family is relevant internationally but of course details of how the organisation of diagnosis and treatment operates in the UK may not be applicable in other countries. Leaflets like these inevitably lead to more questions but I think they are useful because they are organised, they help you to think about topics in a sequence, you can write notes in the margin, underline interesting pieces, go back to them time and again. The main advantage is many, many experts and practitioners have come together and agreed the content making the booklets a pool of knowledge. In contrast the internet is like a mad tangle, following the separate threads and making sense of them is a nightmare, good advice, bad advice - how are you supposed to know? Stick to the "official" sites and be sure to talk with the people who know about your situation. We slept much better once we'd learnt that lesson!