What now - any advice?

My main concern is that PNI is noted on the left side of the prostate gland and that surely means the cancer has broken out of the prostate, therefore starting to spread? I am slowly recovering my composure and i will try to be sober and logical about the situation.

The festive period is a bad time to be diagnosed with cancer as hospitals will be running on "holiday mode" and appointments may take longer.

I will download and read the kit and try and understand to the best of my ability. I just hope I will not be delayed in being processed starting with bone scan through to consultation and treatment as I dread the cancer growing quickly before it can be arrested locally.

I will keep in touch with the group.

Thank you for your reply. It seems to me that you are very knowledgeable about the subject and I value your response which is concise and to the point. I spent almost most of the day yesterday reading the toolkit which you recommended and I also surfed the web gleaning more information. I must admit some websites, especially those from the USA, paint a grim picture of generic survival rates when they give research details, but then I tend to ignore them on the basis of suum cuique - that no one person is the same as the other and to each his own.

I had two letters dropped into my box this morning and they brought me some good news.  A bone scan has been arranged at the Royal Surrey County Hospital for 3 January 2018. And a little better news is that I have an appointment to see the consultant at the same hospital on 9 January 2018. It is now really a wait until what the bone scan reveals before I know exactly where I stand. so I am determined to enjoy Christmas with my family for the time being.

May I wish everyone a very merry and happy Christmas.

Edited by member 23 Dec 2017 at 17:32  | Reason: Not specified

The festive period is now over. I underwent both bone scan and CAT 360 scan on the same day on 3rd January of this month. I received two appointments to see two different doctors at two different hospitals. As it turned out it was for consultation with one on surgical removal of the prostrate and the other is for radiotherapy.

I met the consultant on Tuesday 9th this month to discuss my condition. Oddly enough, the bone scan results were (and still are) not ready but the consultant was not too concerned about it based on both my TRUS and MRI results and I was offered a Retzius-sparing radical prostatectomy, which is a new method. After much discussions during which I asked a lot of questions, I have decided to accept this offer and I have been put on a waiting list. The consultant informed me that the waiting would be between 3 to 4 weeks, and I am amazed how quick that is.

Out of respect to the doctor in the other hospital, I will attend the meeting next Tuesday 16 January to hear about the offer of radiotherapy treatment but in all honesty my mind had already been made up during the Christmas period to go for total removal of the prostate gland. The reason for that is I feel that the source of cancer must be tackled and removed completely. Whether I have decided wisely or not is in the hands of God.

Getting prostate cancer made me feel humbled and I realise how fragile one's life is. However, I am inspired by many people who contributed to conversations on this Prostate Cancer UK website. I would not have coped strongly if it was not for reading all they - and you - have to say and advise. A very sincere and humble thank you to you all here.

I will be back.

He who lives, loves and knows what it means to die.   - Jiddu Krishnamurti.

Edited by member 11 Jan 2018 at 12:27  | Reason: Not specified

I have received email from my Macmillan nurse today confirming that my bone scan results would be awaiting me at my next meeting on Tuesday 16th. I will then know my TNM situation.

I had my MRI scan in October 2017 before TRUS biopsy on 8 Dec. The gap was due to my month long holiday in Mauritius which was booked in January 2017. When I underwent the CAT 360 scan straight after my bone scan, I was told they would take images of my groin and my chest. When I met the consultant last Tuesday 9th, he confirmed he needed to have a look at my chest as well as my groin in advance of deciding whether to offer me an operation.

I suppose some doctors have different modus operandi.

I understand my prostatectomy involves approaching the prostate from below the bladder instead of from above the bladder. I was also told that in my case the catheter will exit my body below the belly button area instead of through the urethra. I will know fully in good time when I next meet the consultant.

Regards

Rafael

He who lives loves and knows what it means to die - Jiddu Krishnamurti.

I am starting to bite my nails as I did suffer DVT & Pulmonary Embolism some 7 years ago following my Hallux Vaglus operation on my right foot. I almost died at that time.l attributed the problem to the surgeon not giving me heparin injection after the operation. I was put on warfarin and heparin injections for 4 months before coming off them.

I wonder if I am worrying too much but I would appreciate some experience from someone who went through prostatectomy so that I can be well prepared for what I am about to face.

Regards

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

Multiple PEs! You must be made of tough stuff. I do not think I will be able to survive another attack of PE as I was thankfully rescued by paramedics when I had it 7 years ago.

I may have been reading too much about the side effects of RP and taken them too seriously. I will try and ignore it, and think of what you went through. Thank you for rocking me to my senses.

Rafael.

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

The only pain I felt post-op was the incision above my belly button and I was administered morphine for that. It did not take long for the pain to subsidise and I was wheeled into my ward. There were 4 tubes coming out of my lower body, one of which was the prepubic catheter and the rest just discharge tubes. The first thing I checked was my genital area and pelvic floor- they worked and moved well as normal to my relief and delight. Being woozy, I spent the rest of the Monday sleeping.

Tuesday morning, the surgeon came to check on me. He said the operation went well and he was pleased to say that as far as he could see the cancer had not spread from the prostate and he left my nerves and lymph nodes intact. After discussing my general post-op condition, the surgeon suggested I could go home in the afternoon! This was unexpected but I accepted.

Today is Friday 23rd and here I am, feeling sore and tired, but glad that I have chosen the prostatectomy over RT and I think it was worth going through the pain for it. The most uncomfortable part of recovery is the prepubic catheter - the open pore where the tube enters the skin constantly leaks, but it is nothing bad like the urethal catheter, which can cause inconvenience and infections. My prepubic catheter will be switched off by me on 6 March and removed the following day.

I am now doing pelvic floor exercises and there is no discomfort.

Overall I am pleased with the operation and I would recommend it.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

It is just natural internal pus/blood leaking through the pore. The amount of leak is not very large, around 1cm diameter around the catheter. The amount of leak is receding day by day.

The catheter is not stitched to the skin as it goes straight into the bladder and it is secured by an internal water balloon which holds it well in place. There is no feeling of pain at all with the prepubic catheter. It is much much better than the traditional catheter running through the urethra. I am indeed very grateful for having the prepubic catheter as it makes my recovery much more comfortable and bearable.

The prostatectomy clinical nurse is always on hand via the phone or email to answer my questions or concerns. It is a great post-op service provided by the hospital.

I am feeling great this morning, considering the fact that the Retzius-sparing robotic radical prostatectomy is labelled a major operation.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

There needs to have a better testing method and hopefully it is not too far off in the future. I have two sons, aged 38 and 36, and I told.them to take PSA test when they are over 40, rather than to wait till they are over 50, and also.to keep an eye on increase in urinal frequency. One can't be too careful and prevention is better than cure.

Perfectly normal to leak from the penis when the bladder muscles are strained by bowel movement or a sneeze - this would happen with a urethral catheter as well. You shouldn't really be doing pelvic floor exercises while the catheter is in place though.

I can understand the reasons for not doing PFEs with a urethral Catheter. I have had a suprapubic Catheter for about 11 months and keep being told to do the PFEs.

A bit of leaking "may" be a good sign as it would seem to indicate the urethra is still okay.

Thanks Chris

If the to do list says you can do them with a suprapubic catheter then you should assume that it's fine.

I am awaiting my meeting with the surgeon on 3 April when I will know the laboratory results on my prostate gland - I have to try and be positive about it.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

NHS or private?

Who was your surgeon?

Best of luck with your recovery!

Many thanks.

Guess who I am going to see later this month? Already booked weeks ago.

And once again, best of luck with your recovery.

With the exception of the odd reaction due to unexpected coughs, sneezes and outbursts of laughter, I have hardly wetted myself. Last Friday was my son's wedding day and I had 7 pints of bitter along with 5 large glasses of red wine and I slept through the night for 7 hours! Not a drop of wetness. Last night my family took me out for a meal and I had 4 pints and 2 glasses of red wine and I slept for 8 hours through the night without answering the call of nature. I use Tena Extra Life pads as a precaution and I now do not need them. This is amazing and I would like to thank the skill of my surgeon in performing his Retzius-sparing robotic radical prostatectomy. I do not have any pain whatsoever at present.

I dearly hope the kind of prostatectomy which I had will be made freely available to many men and the sooner the better because recovery is quick and continence is almost as normal as possible immediately after the suprapubic catheter has been removed. It is my feeling that the use of suprapubic catheter should be made the norm after prostatectomy.

All that remains for me is to hear the results of the laboratory test on my prostate gland on 3rd April and I am keeping my fingers crossed.

For the present, I have never felt fit and happier.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 18 Mar 2018 at 13:56  | Reason: Not specified

As for recuperation, I have booked to go to Barbados for a month from 14 April.

Rafael

Unacceptable turn of conversation when you consider our gay, bi and trans members? :-(

We are looking forward to the break.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

Edited by member 29 Mar 2018 at 15:40  | Reason: Not specified

Rafael,

I would be interested to know how you felt post-operative. Were you on morphine? How long was your stay in hospital?

You say you felt the worst after-effects of the op two or three days later, what were they? When could you get out and about still attached to your catheter?

Did you wear flight socks and have to take antibiotics? Any self-injecting?

I am self-employed, and although most of my “work” is done on this here IPad, I do have to drive around and lift up to 12 kilos from time to time. I just need to plan how long I am likely to be out of action after my forthcoming Retzius-sparing laparoscopic robot assisted prostatectomy (that’s if I survive it...😂🤣😆)

When I worked on Cunard Line we used to visit Barbados every other Wednesday. We would go straight to Sandy Lane Hotel and the beach in Holetown. Cocktails, jet and water-skiing. Happy days! Sandy Lane has gone silly money since that Irish guy bought it, the last time I was there. Barbados is one of my favourite Caribbean islands, and I have been to most of them.

You say you are deaf. Funnily enough, when I went to Specsavers to get my hearing aid checked yesterday, they were giving out free earplugs! I thought they were supposed to improve your hearing!

They do tours at the Mount Gay distillery in Bridgetown, by the way.

My hospital stay was just an overnight stay... The surgeon visited me at around 8.30am the day after the surgery to see how I was getting on. He then suggested I could go home in the afternoon and I gladly accepted it. After this, the nurses removed the drain tubes and bags and set up a leg-fitted urinal bag. The pharmacist came and gave me a box of 28 injections, some paracetamol and ibuprofen tablets to take home. My wife picked me up at 3pm and off I went home. I felt no pain at all during that time. I discarded my compression socks as soon as I got home as advised.

I had to inject myself daily every morning for 27 days. I injected on my thighs, each taking alternative turns. No pain at all.

I think it was the third day after surgery that I started to.feel some pains, especially around my stomach and pelvis floor area... The stomach, as i inderstand it, was pumped full of carbon doixide prior to the operation to create working space. The pains are a consequence of "as the morphine wears off the pains come out to play." This lasted for about 2 days and they were very bearable. It took about over a week before the swollen stomach eventually receded to my normal size. I weighed myself when I got home from hospital and I was alarmed to find my weight at 15 stones! This morning I got on the scales and I was glad to read it has settled at 13st 9lbs.

went out with my catheter attached to my right leg and it presented no problem. The catheter was removed after 14 days. I have read horror stories from other people who underwent RP, but my experience was nothing like theirs, it was pleasant experience considering the kind of major operation I underwent.

I am confident you will not regret your decision and in the long run you will be grateful to have undergone such an operation.

Yes, I am as deaf as a post and I am labelled as profoundly deaf which renders hearing aids useless to me. However I am a proficient lipreader. I was a construction site manager for 43 years, working mainly in London and around the Southeast of England althpugh I was born in Newcastle upon Tyne. Earplugs are absolutely useless to me - lol!

Barbados is a country that is close to our hearts and the Bajans are great people. They are very friendly and helpful - sometimes strange I may say. Whenever I mention we both (my wife and I) are deaf, most of them were eager to say that their cousins are deaf! I have yet to meet one who said they have a deaf family member - it is always "My cousin is deaf."

We first went to Barbados 14 years ago and made great friends with the locals. Since that time we stay for a month per holiday... and we never looked back.

Must halt here awhile as I have to go to my club for my daily pint. I hope I have reassured you by answering your questions. You will be well advised to take the Retzius-sparing robotic radical prostatectomy and I am confident you will not regret your decision.

Rafael.

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.