Unwelcome news

Hi Brian, welcome to the site and sorry that you have to be here but now that you are I am sure you will get a whole host of good advice and help throughout your postings.

I am 66 and was diagnosed Feb last year with aggressive cancer, confined to the prostate, PSA63 and Gleason score of 4+3=7.
My treatment was hormone therapy followed by 37 sessions of radio therapy (shortened version, see profile for,long one).

The good news is that my PSA level is now 0.01 and officially undetectable, much to my relief.

Your treatment path will depend on the results of the MRI and, if necessary, a bone scan and yes it is a worrying time for you while waiting to hear what where and how they can treat you but if you read up on information that is available on this site by downloading the "toolkit" or phoning the number on PCUK site to get one sent to you.

One suggestion for when you see your specialist is to take someone with you so that details mentioned are better remembered.
It is also wise to take a notebook with you to write down some of those details as well as jottinG down questions that you want answers to.

If you feel the need to speak to someone then call the specialist nurse on this site as they are very helpful and will be able to explain anything that worries you or are unsure of.

There are lots of others on this site with the knowledge gained by either having PCa or being the other halves(OH's) and there is no subject that is taboo so ask away and your questions will be answered.

Best wishes with your results, Chris/Woody

Life seems different upside down, take another viewpoint

Hello Brian and welcome to the forum though sorry for the reason that brings you here.

I see that you have had an MRI scan for which results are awaited. This can help with a staging which aids establishing whether the cancer is contained within the Prostate, is in the process of breaking out or has spread outside of it. You may also be asked to have a bone scan. When all the tests and scans have been done you will be given a diagnosis and be in a better position to know where you stand and what your options are. Active Surveillance is pretty straight forward if this is decided on and means you are monitored. However, even if you do decide on AS, it is a good idea to research treatments and the pros and cons so you know about these should at some stage you need radical treatment. A good place to start is by getting the 'Toolkit' available through the main part of this charity.

An MRI scan has confirmed that my cancer is contained with the prostate. The Specialist has said that at the moment there is no rush to start radical treatment and I have agreed to go on Active Surveillance. PSA tests every 3 months and further biopsies after 12 months. If my PSA continues to rise I will offered treatment to remove the cancer. They are also considering further tests to treat some urinary retention issues that I have.

Once again thanks for the kind messages of support and good luck to everyone using this site.

Brian.

Good for you. That is great to have AS of your PCa. Hope they can solve the retention!

The reason for the delay is due to the fact that I have volunteered to take part in a clinical trial. The purpose of the trial is to find a new treatment for early stage prostate cancer in the form of a vaccine. It is called VANCE01 and is currently being conducted in Oxford and Sheffield. I have joined a group on the trial that receives 3 vaccinations given at four weekly intervals. The operation to remove the prostate takes place four weeks after the final vaccination. After which the cancer tissues will examined to see what effect the vaccines have had. I received the first vaccination on 12 July and will keep you informed of how it goes.

In the meantime good luck to everyone.

Brian.

I have frequently heard that a vaccine for prostate cancer is five years away, good to hear that trials are actually happening. Hope all goes well and I am sure we all look forward to hearing your news.

Thanks Chris

I volunteered because I want some good to come of my decision to have the surgery. In a way also I am relieved that a final decision has finally been made following months of tests and all the waiting around for results. The VANCE01 trial to find a vaccine is very much in its early stages and the full results are probably a couple of years away. I was told on Tuesday that it is likely to go out to other centres including Cambridge as there like Oxford the NHS and the University work hand in hand.

I have no doubt that I will be worrying for England come October!

Brian.

Thanks for the update and thanks for taking part in a trial that may help future PCa sufferers. Hope the results are good. Is the flow still as bad ? All the best for the op in October.

Thanks Chris

Hi Chris

Thanks for the advice. I have received no feed back from my bloods but return to the trial centre for the final time on 21 December. I understand from the prostate studies they have done on other participants things are looking good. I hope to receive feedback in due course when they study my prostate after removal. I will of course keep you all informed.
Thanks once again.

Brian.

I hope all goes well for you tomorrow. I really wanted to say thank you for taking part in this trial .

So thankyou.

Xx

Mo

To all you kind souls out there. Just to let you know that everything has gone well so far. The surgeon carried out a nerve sparing operation and he is the main man behind the VANCE01 vaccine trials that I have been taking part in. When I see him post op in a few weeks I hope to let you know if the vaccine I was given has had a positive effect on my cancer cells. The trial has been extended to Leeds now as well as Oxford and Sheffield where it first started.
I got home from hospital at 8pm yesterday, still feeling pretty sore. My op started at about 1pm on Monday and my only memory up until about 6pm was waking up in recovery telling the nurses just how gorgeous they were and even more gorgeous when they came into focus. The main pain yesterday was a build up of gas but what a huge relief when I started to get rid of it. They offered me laxatives in hospital yesterday, I turned them down I was fearing a catastrophe!
I also had trouble with the drain leaking all over the place and have a lot of bruising to my side. Getting the odd twinge in what seems left of the old todger and live in fear of pulling on the catheter. I was given a special padded cushion in hospital incase of a coughs and sneezes. It came in useful when a sip of tea went down the wrong way and also for cushioning my tummy on the way home. My wife must have found every pot hole in Oxfordshire on the way home.
Best wishes and good luck to everyone, I will keep in touch and let you know how things go. Any advice on how to cope from now would be very useful. Thank you all.

Brian.

Hi folks

Day 2 at home, spent too long in bed overnight and having a few problems with the catheter this morning. A little leakage around the outside. My wonderful wife has changed the bag and it has started to fill again following a little squeezing to dislodge what look like a dollop of congealed blood! Has anyone else had this problem? I am keeping up the fluid intake and feeling more comfortable moving around all to the good.

Thanks everyone.

Brian.

You can make some nice patterns with the congealed blood in the bag, expect plenty on debris in the next few days.

I am not suggesting you do the following although I did read it on a NHS Urology website. I found if the catheter seemed to blocked lifting the bag above the height of the bladder for a few seconds would free a small blockage. Newer bags seem to have a non return valve I found a gentle squeeze on the bag did the trick.

Have you purchased some rubber gloves for the oh when changing night bags. I got some stick over that from one of our lady members who suggested I should be buy chocolates or flowers, another member came to the rescue and suggested marigolds were gloves and flowers.

Thanks Chris

Best wishes

James

Another tip when sitting on the loo twist gently from side to side. A few days after the op I had the paramedics and ambulance out with horrendous abdominal pain, 30 mg of morphine took the pain away and I was released from a and e dept as one of the 30 per cent of people they never diagnose. I think that was constipation. I think I am right in saying I was told, not to let anyone change your catheter and do not let them give you an enema.

Thanks Chris

Hi everyone.

I have an 8am start at the hospital on Monday for a Trial Without Catheter! Really looking forward to it as I know the old todger will be relieved. Would be grateful for any advice you can give me? I have a supply of pads from a Prostate Cancer UK surgical pack obtained a few weeks back. I also rang one of the marvellous specialist nurses last week as I was not prepared for the football size haematoma on my left side from the leaky drain. She advised me not to go too heavy with the pelvic floor exercises to begin with following catheter removal as I could exhaust already tired muscles.

Best wishes to all.
Thanks Brian.