New prostate cancer diagnosis

Hi

Its good that you’ve gone through all the possibilities, also a cancer clinic is very helpful on discussing how you decide which way to go. Just be sure you have a some questions ready, that’s what their there for to help and give you peace of mind and the best treatment.

Twenty sessions for EBR is the norm others who have had the other two treatments will give advice I’m sure about the other two procedures so keep looking, stay positive your PC is curable.

stay safe

Joe 

Hi,

What's your TNM score?
(Tumour, Nodes, Metastases)

None of the treatments are free from awful side effects, you need to look at them all (short term and long term) to see what you can best live with. Remember that not everyone gets all the side effects!

It's also well worth reading the 'toolkit' for general advice.

Thank you. I look forward to the clinic meeting. 

Since this rather distant first posting, turns out I was caught quite early at T1c with Gleason 11.8.  I had permanent low-dose prostate brachytherapy just over three months ago and just had my first post-op PSA result of 1.8 which seems amazing so quickly.  Bit painful down there and needing to pee rather too often at night and during the day but understand this is par for the course.  I gather the effects start to wear off after 4months and so looking forward to the future. Just purchased a cushioned horseshoe shaped saddle for my bike which I hope will make cycling more comfortable and get some exercise.

Hi I'm a month on post RT. I was given my diagnosis by the specialist nurse who despite saying he was available at the end of the phone never answered his phone and never returned my calls. I did in the end talk to one of his colleagues who was helpful in helping me decide which treatment to go for. Know  one has ever mentioned a cancer clinic! Can you briefly explain what they are? Thanks.

My husband had his op in London July 18th , he has never met the specialist nurse and hasn’t been asked to a cancer clinic . He’s had no support whatever. So grateful to learn and be able to ‘vent’ here. His outer wounds have nearly healed , he is upset having to wear pads.He is glad to be here - not spoken to the surgeon post op yet  .Emotionally he could do with some support . I feel for you all x

This does seem to be a common state of things. Surgeons are often abrupt, not generally available and nor are support staff. I never had a nurse allocated. We were told rather abruptly that I had cancer which was bit of shock and similarly my wife with another cancer only heard about it later from somebody else with a 'did you not know'.  My procedure went well and the theatre and ward staff were wonderful but then the back-up fails. We did most of our own research about options and side effects. We had a 'clinic' but which turned out to be a brief chat with the surgeon when I was supposed to be able to ask all the questions, but the meeting was brief.  The surgeon was probably busy and his job is surgery but it would be good if the whole service was a bit more friendly and helpful in difficult times. I have found Prostate Cancer UK, their website and specialist Facebook Groups are also very helpful and supportive.

I’m sorry to say I shout at the tv when the ads come on about sitting with the dr and being told nicely you have cancer .

Indeed.

My original question was what's a cancer clinic. I don't need help now but would have liked it after the diagnosis and during the period I had to decide on either surgery or RT. My experience of the lack of support from the specialist nurse was shared by almost everyone I met during  my RT and also other men I've met in my own community who have been diagnosed with Prostate cancer. It may well be they are overwhelmed by the number of cases they have, but if that's the problem they shouldn't pretend to offer support and MacMillan, who I believe partly fund these nurses should look at better ways to spend their funds. 

I do have to say when I got to speak with a specialist nurse (not the one allocated to me but one who answered the phone) she spent almost an hour looking at my case notes and although not telling what I should do helped me decide on RT for which I'm very grateful. I would also like to say I have had nothing but kindness and professionalism from from everyone who has delivered my treatment at the Churchill Hospital in Oxford.