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User
Posted 21 Dec 2017 at 13:02

I have been diagnosed with prostate cancer following TRUS biopsy on 8 December this mont. Out of 17 samples taken, 13 were cancerous and 4 clear. I was informed by my MacMillan nurse that I am in grade group 3 - Gleason score 4+3 = 7. Right side 5 out of 9 cores positive and left side 8 out of 8 cores positive.  PNI is present on the left side and extracapsular extension is not identified.


Being deaf, I find it hard to speak to anyone over the phone and it seems I am quite a number of steps behind everyone who is not deaf in trying to glean information of what my diagnosis means and how bad it is. There are various treatments that I have to try and understand in terms of their effectiveness in controlling the cancer, besides the side effects that follow from treatments.


I only received the news on Tuesday 19 December and I am now awaiting an appointment bone scan at the Royal Surrey County Hospital. Can anyone indicate to me what I may face ahead and how best to decide on the choice of treatment? I will be 69 in February 2018 but I am in otherwise good health.

User
Posted 23 Dec 2017 at 17:29

My apologies as I was not aware of the rules. Thank you for letting me know and I will edit my previous post.

User
Posted 05 Apr 2018 at 02:08

Very pleased to read the results of your follow up and downgrade. It seems most post-operative biopsies are upgrades. Buried deep amongst all the clinical information I got from the NHS hospital was a note that said with my staging and score there is a 37% chance of recurrence within 5 years after RP.

Strange that no doctor has ever mentioned that to me! Perhaps I wasn’t supposed to see it. Any idea what your percentage is? Obviously better now following your downgrade.

“Now I am become death, the destroyer of worlds”. Sanskrit and J Robert Oppenheimer, Chief Scientist of the Manhattan Project.

It seems everyone writes something profound at the end of their posts, so I didn’t want to be left out!

Edited by member 05 Apr 2018 at 04:35  | Reason: Not specified

User
Posted 21 Dec 2017 at 14:17

Hi Rafael,
in some areas, Macmillan have volunteers who sign. You can download the toolkit from here https://prostatecanceruk.org/prostate-information/our-publications - it is well written and will give you lots of ideas about different treatments & their side effects plus some questions to ask your nurse once you have all the test results.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Dec 2017 at 18:14

Hello Rafael,


I am sorry you find yourself here, especially at this time of year, but welcome to the Forum.


I found it full of good advice and support since I was diagnosed earlier this year with similar Grades to you, Gleason 4+3=7, with a PSA of 9.6, bi-lateral.


Were you given a PSA result, if so it might be useful to post it here as all info helps.


I was given Hormone Therapy, HT, and Radiotherapy, RT, but many seem to be offered Radical Prostatectomy, which I sometimes think I would have preferred.


I’m sure someone who had RP will be along shortly to post on that treatment.


I had an HT implant, Zoladex, in my waist. These last for 3 months and are to reduce the size of the cancers and lower the PSA prior to treatment.


I had 2 over 6 months and started RT about halfway through. For RT I was given 20 sessions at a high dose, some are offered 37 sessions, I think this might be age related, I’m 61.


I had a bone scan and liver ultrasound as I had symptoms in these areas but was found to be clear.


It’s an awful time of year to be diagnosed. I found getting as much information as possible useful to keep occupied so I did not get anxious.


The ‘toolkit’ that Lyn mentions is excellent source of information.


Best wishes, G

User
Posted 21 Dec 2017 at 22:10

Hi Raphael,
PNI suggests a higher risk but does not necessarily mean it has broken out of the capsule - the perineural tubes grow into the prostate by some distance.

I think you are right about Christmas slowing things down - my husband was diagnosed at Christmas and we couldn't speak to anyone to get more information for 2 long weeks - but fortunately, prostate cancer is quite slow moving so a couple of extra weeks won't mean that your cancer goes galloping around.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jan 2018 at 19:04
It's good when you've made up your mind and good when it's done. Your reasoning was similar to mine i.e. remove it. Can't say I've heard of Retzius sparing will look it up. Also having a CAT scan after an MRI and the bone scan result taking so long are both different than my treatment. My bone scan result was 24hrs but the MRI result took a week. So let's hope the op is nearer 3 weeks bearing in mind a pre-op exam is needed probably more than a week before the op.
User
Posted 17 Jan 2018 at 13:03

Yesterday I had an interview with the radiotherapist. I got my bone scan result and I was pleased to read a one-line report:


"Pelvic SPECT CT and whole-body planar imaging demonstrate no suspicious foci for osteoblastic bone metastases."


This news came as a huge relief to me and I now know my prostate cancer situation as T2bN0M0. I received a good outline of what radiotherapy can offer and how far it can go in the treatment of prostate cancer. The radiotherapist was very courteous and she went out of her way to answer all my questions, especially when it comes to the benefits of deciding between RP and RT. In spite of the fact that I am impressed how much RT had improved over the years and its immense contribution to cancer treatment, I still opted for RP mainly because I do not want to walk around with the source of cancer in me and the prostate gland must go. I do understand that the cancer can return elsewhere after RP, meaning I will have to undergo RT if it comes to that. However, I would rather have RT after the removal of the prostate gland than have RT with the prostate gland in place. Rightly or wrongly, I have made my decision, so God help me.


I am on waiting list for RP and I am expecting to go into surgery within 3 weeks.


Rafael.


 


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

User
Posted 17 Jan 2018 at 17:44

Nobody would argue with you, Rafael. Soundly based thinking! I hope all goes well. Don't allow yourself to have any regrets!
AC

User
Posted 28 Jan 2018 at 18:37

No experience of exactly the same thing, but I did collect multiple PEs from my six cycles of docetaxel. Treatment with blood thinners followed, said to be for six months as standard, but possibly extendable. As I'm on a further course of chemo, cabazitaxel, I'm continuing with Apixaban, which has no side effects bar bruising at the site of the chemo cannula. So no problem, really. I suspect you may be worrying unnecessarily; you will after all be minimising stroke/heart attack risks!!

AC

User
Posted 08 Feb 2018 at 20:53
My pre-op went well last Thursday. I had blood tests and today I asked about my current PSA result. I was taken aback when the nurse said it was 3.8! I definitely have prostate cancer and yet the PSA result is indicative that I am within the normal range which literally means that I do not have prostate cancer!
I find the situation odd. Does anyone know why the PSA reading dropped or does it show that PSA testing system leaves a lot to be desired? I am trying to get an explanation... Does anyone know?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti
User
Posted 09 Mar 2018 at 10:41

Good news and wish you continue to further progress well.

Barry
User
Posted 18 Mar 2018 at 15:42

Congratulations on your recovery, and best of luck for the future.
I also like to drink “plenty of fluids”.......
Cheers, John

User
Posted 29 Mar 2018 at 13:59
I thought I should record here that I am 100% pad free and on 2 April it will be my week 6 since my Retzius-sparing robotic radical prostatectomy. I have an appointment with my surgeon on 3 April both to discuss my current condition and the laboratory results on my discarded prostate gland. I am keeping my fingers crossed on the latter.
I have had approaches from a number of men via email querying about the risks of opting for Retzius-sparing robotic radical prostatectomy. I would like to state here that everyone should go for it rather than accepting other approaches advised by surgeons who are untrained in the Retzius-sparing type of prostatectomy. Like any surgery, it has consequences in terms of pain, soreness and side effects, but the Retzius-sparing method creates post-operative conditions that aids recovery more quickly and less painlessly and even less frustration. The suprapubic catheter is a great thing - it is more comfortable than the tradition penis catheter. There is no pain and no irritation. The suprapubic catheter removal is smooth and completely painless - I did not know it was even out when the nurse pulled it. Continence is fantastically normal quickly after the unlocking and removal of the catheter. The only problem I found was trying not to forget to control when sneezing, coughing and laughing during the first 3 weeks after catheter removal. Now, I am able to laugh, cough and sneeze without having to tighten my genital area - it is back to normal.
I would recommend men to go for the Retzius-sparing type if that is possible. I am only saying this based on my pleasant experience... even now I am still in awe of my surgeon's skill and professionalism and I am eternally thankful for what he has done to me.
User
Posted 03 Apr 2018 at 16:29
Been to see the Professor today. Laboratory report on my prostate gland is ALL CLEAR and the cancer was confined to the prostate gland only and did not spread. Happy days ahead!
I mentioned how long it would be before I am able to get an erection.
I was prescribed 3 Viagra tablets a week and he said it would be about 2 months.
I am to see him in 3 months time, and take PSA test a week before.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 03 Apr 2018 at 17:04
Rafael

Great news on the lab report, looks like you are heading for a one hundred percent success. Enjoy that holiday and all the best for the future.

Thanks Chris
User
Posted 03 Apr 2018 at 17:30

Excellent news Rafael.

Well done. Long may it continue

We can't control the winds - but we can adjust our sails
User
Posted 03 Apr 2018 at 17:41
Hi Rafael
It's been very interesting following your treatment and what great results. Long may it continue.

All the best

Kevan
User
Posted 04 Apr 2018 at 08:01
Within the next couple of months? That seems to me an unusually long wait. My operation took place within 3 weeks of seeing him.
Let's hope it is not going to take too long.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 04 Apr 2018 at 11:58

Rafael, I am quite sanguine and in no hurry about the whole thing for several reasons.
I have no symptoms, despite what doctors tell me, and I have never felt so well.
Tommy the Tumour is medium grade aggressive, and we may well have been bosom buddies for up to seven years or more. If the Gleason score was one less, active surveillance would be an option.
The Prof said he’s going to do some procedures in Jamaica shortly, not sure for how long.
I have some social arrangements in May, not least the annual London Champagne Tasting, which is like a second Christmas Day for me.
If my GP hadn’t ticked the box for PSA on my annual blood test, it would be next November before my next one, or the November after that or.....unless I developed symptoms.
Finally, I am self-employed, so I need to plan my work around my convalescence, although I can do a lot on this iPad.

First week in June looks good!

User
Posted 09 Apr 2018 at 16:15
I thought this article may be of interest on this PCUK forum - www.dailymail.co.uk/health/article-2291798/Prostate-cancer-In-cruel-twist-fate-prostate-cancer-experts-ALL-hit-disease-Their-stories-vital-reading-men--loved-ones.html

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 03 Feb 2019 at 07:00
Maybe that old wives tale about toilet seats was true after all!
User
Posted 17 Mar 2019 at 13:56
This is an absolute disgrace. Rafael. I know that money can't make up for the fact that you've had life-changing surgery which was very likely completely unnecessary, but I sincerely hope that you get a VERY sizeable pay-out from this to allow you to enjoy many more holidays in Barbados!

All the best,

Chris
User
Posted 12 Apr 2019 at 13:12

Chris,


You're taking the same approach as my wife! I agree entirely that I need to get compensated for the mixup that led to my situation.


I note that the compensation range that the NHS have given for people in my situation or similar is between £30,000 to £135,000 according to one website. This kind of offer is way below what I have in mind as I have included the impact on my wife as a part of the package for my claim. I just need a good solicitor and he/she is hard to find at the moment.


I will wait for the SIRI report and take it up from there. Thank you for your support.


 


Regards


Rafael


 


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

User
Posted 14 Apr 2019 at 07:32

I really do hate it when people complain and seek to make a quick £ from very stretched state services such as the NHS or our schools.  But sometimes massive injustice and incompetence occurs and sometimes people get hurt.  You have been irreversibly injured and your life, no matter how positive you try to be, will never be the same.  I even wonder if the NHS is guilty of grievous bodily harm, because that’s what’s been done to you.  Living without natural erections and with dry orgasms is not easy, but st least I can accept it was the price that had to be paid in exchange for life.  I would be driven to despair in your case.  You have every right to be angry and I think in some ways you’re being too soft with the hospital.  I’d be off to a solicitor right away if I were you.

User
Posted 18 Apr 2019 at 16:06

I got a  rapid response from the Claims and Coroners Co-ordinator and my claim will be processed on 29 April when she gets back to work after annual leave.


It seems very simple so far to start making a claim without a solicitor - yeah, so far!


 


Rafael


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

User
Posted 18 Apr 2019 at 18:30
I'm keeping my fingers crossed for you, Rafael. I hope your claim is handled quickly.

Best wishes,

Chris
User
Posted 08 Oct 2019 at 19:54

Can you take your GP prescription to the hospital pharmacy?


I would be interested to know how well it works for generating erections. My comments come from a couple of ED urologists, not from personal experience.

User
Posted 09 Nov 2019 at 20:31

Rafael


Keep going mate, you will get there.


Thanks Chris

User
Posted 10 Nov 2019 at 03:54
A good dose of Vitamin Sea might relieve some of your pain and anguish😉

https://youtu.be/GaElH0EHjIs

Cheers, John.
Show Most Thanked Posts
User
Posted 21 Dec 2017 at 14:17

Hi Rafael,
in some areas, Macmillan have volunteers who sign. You can download the toolkit from here https://prostatecanceruk.org/prostate-information/our-publications - it is well written and will give you lots of ideas about different treatments & their side effects plus some questions to ask your nurse once you have all the test results.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Dec 2017 at 18:14

Hello Rafael,


I am sorry you find yourself here, especially at this time of year, but welcome to the Forum.


I found it full of good advice and support since I was diagnosed earlier this year with similar Grades to you, Gleason 4+3=7, with a PSA of 9.6, bi-lateral.


Were you given a PSA result, if so it might be useful to post it here as all info helps.


I was given Hormone Therapy, HT, and Radiotherapy, RT, but many seem to be offered Radical Prostatectomy, which I sometimes think I would have preferred.


I’m sure someone who had RP will be along shortly to post on that treatment.


I had an HT implant, Zoladex, in my waist. These last for 3 months and are to reduce the size of the cancers and lower the PSA prior to treatment.


I had 2 over 6 months and started RT about halfway through. For RT I was given 20 sessions at a high dose, some are offered 37 sessions, I think this might be age related, I’m 61.


I had a bone scan and liver ultrasound as I had symptoms in these areas but was found to be clear.


It’s an awful time of year to be diagnosed. I found getting as much information as possible useful to keep occupied so I did not get anxious.


The ‘toolkit’ that Lyn mentions is excellent source of information.


Best wishes, G

User
Posted 21 Dec 2017 at 22:01
Thank you Graham for responding. My PSA fluctuated wildly in the past 3 years between 3.2 and 5.04. However my last PSA reading before being referred for TRUS biopsy was 4.4.
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.
User
Posted 21 Dec 2017 at 22:10

Hi Raphael,
PNI suggests a higher risk but does not necessarily mean it has broken out of the capsule - the perineural tubes grow into the prostate by some distance.

I think you are right about Christmas slowing things down - my husband was diagnosed at Christmas and we couldn't speak to anyone to get more information for 2 long weeks - but fortunately, prostate cancer is quite slow moving so a couple of extra weeks won't mean that your cancer goes galloping around.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2017 at 14:52

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

User
Posted 23 Dec 2017 at 14:56

A Merry Christmas to you to Rafael.


Just a little comment,I believe there is a site rule that says we cannot name consultants,hospitals yes but not the doctors working there.


 


You might want to edit your post to remove his name.


 


Have as good a Christmas as you can manage with this hanging over you


 


Best Wishes


 


Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 Dec 2017 at 17:29

My apologies as I was not aware of the rules. Thank you for letting me know and I will edit my previous post.

User
Posted 29 Dec 2017 at 22:56

I cant offer expert advice but last Christmas my husband was diagnosed PSA 10.8 and T3a which means it has broken through the capsule to localised tissues. Well you can imagine how we felt as he had never been ill before in his 72 years. so yes, there was a wait over Christmas and New Year but he started on Prostap injections in February and had 20 extra strength radiotherapy sessions in June. Saw the Oncologist on the 19th Dec and Psa is undetectable so yes, it fairly takes the wind out of your sails to hear these things and it will take a while to believe it fully but the treatment works.
Just let the experts do their stuff and keep as calmly positive as you can and this time next year you will probably be told your Psa is undetectable too.
I wish you all the best for next year and keep posting so we know how your getting on
Lyn

The only thing you know is you never know,so,keep trying
User
Posted 11 Jan 2018 at 12:19

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

User
Posted 11 Jan 2018 at 19:04
It's good when you've made up your mind and good when it's done. Your reasoning was similar to mine i.e. remove it. Can't say I've heard of Retzius sparing will look it up. Also having a CAT scan after an MRI and the bone scan result taking so long are both different than my treatment. My bone scan result was 24hrs but the MRI result took a week. So let's hope the op is nearer 3 weeks bearing in mind a pre-op exam is needed probably more than a week before the op.
User
Posted 12 Jan 2018 at 15:22
Hi PeteOct16,

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.

User
Posted 17 Jan 2018 at 13:03

Yesterday I had an interview with the radiotherapist. I got my bone scan result and I was pleased to read a one-line report:


"Pelvic SPECT CT and whole-body planar imaging demonstrate no suspicious foci for osteoblastic bone metastases."


This news came as a huge relief to me and I now know my prostate cancer situation as T2bN0M0. I received a good outline of what radiotherapy can offer and how far it can go in the treatment of prostate cancer. The radiotherapist was very courteous and she went out of her way to answer all my questions, especially when it comes to the benefits of deciding between RP and RT. In spite of the fact that I am impressed how much RT had improved over the years and its immense contribution to cancer treatment, I still opted for RP mainly because I do not want to walk around with the source of cancer in me and the prostate gland must go. I do understand that the cancer can return elsewhere after RP, meaning I will have to undergo RT if it comes to that. However, I would rather have RT after the removal of the prostate gland than have RT with the prostate gland in place. Rightly or wrongly, I have made my decision, so God help me.


I am on waiting list for RP and I am expecting to go into surgery within 3 weeks.


Rafael.


 


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

User
Posted 17 Jan 2018 at 17:44

Nobody would argue with you, Rafael. Soundly based thinking! I hope all goes well. Don't allow yourself to have any regrets!
AC

User
Posted 17 Jan 2018 at 18:42

I think you will be the first active member to have Retzius-sparing so we will all be watching your updates with interest Rafael. Good luck!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Jan 2018 at 18:14
Has anyone experienced post-prostatectomy problems with blood clots such as VTE?
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
User
Posted 28 Jan 2018 at 18:37

No experience of exactly the same thing, but I did collect multiple PEs from my six cycles of docetaxel. Treatment with blood thinners followed, said to be for six months as standard, but possibly extendable. As I'm on a further course of chemo, cabazitaxel, I'm continuing with Apixaban, which has no side effects bar bruising at the site of the chemo cannula. So no problem, really. I suspect you may be worrying unnecessarily; you will after all be minimising stroke/heart attack risks!!

AC

User
Posted 28 Jan 2018 at 20:19
A.C.,

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.
User
Posted 08 Feb 2018 at 20:53
My pre-op went well last Thursday. I had blood tests and today I asked about my current PSA result. I was taken aback when the nurse said it was 3.8! I definitely have prostate cancer and yet the PSA result is indicative that I am within the normal range which literally means that I do not have prostate cancer!
I find the situation odd. Does anyone know why the PSA reading dropped or does it show that PSA testing system leaves a lot to be desired? I am trying to get an explanation... Does anyone know?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti
User
Posted 23 Feb 2018 at 17:14
I underwent the Retzius-sparing prostatectomy last Monday 19 February. I went into the theatre at exactly 1pm and woke up at 4.50pm in the recovery room. According to the theatre nurse the actual operation took 2.5 hours as preparations and insertion of robotic arms, along with dismantling at the end, took quite a while.
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.
User
Posted 23 Feb 2018 at 23:54
Rafael

Look forward to hearing how you progress following your retzius procedure.

What is leaking out of the port and is there a stitch securing the Catheter to your abdomen wall ?

Thanks Chris
User
Posted 24 Feb 2018 at 09:07
Chris,

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
User
Posted 24 Feb 2018 at 13:42

Hi Rafael,


Pleased to read that your RP went well.


Originally Posted by: Online Community Member
I was taken aback when the nurse said it was 3.8! I definitely have prostate cancer and yet the PSA result is indicative that I am within the normal range which literally means that I do not have prostate cancer!


It does sound unusual but thankfully they found and removed the PCa despite the low reading. This seems to be one of the shortfalls of PSA testing, but best there is until another initial indicator is found.


Yesterday Stephen Fry told of his diagnosis of PSA at just 4.97 yet Gleason 8 upgraded to 9 after RP and with Node involvement.


At 60 he was just over the 4 level.


Best wishes on your continuing recovery.


G

User
Posted 25 Feb 2018 at 10:32
Yes. The PSA readings can be very misleading. I did ask my surgeon why that is. His reply was "Don't ask me because I really don't know."
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.
User
Posted 27 Feb 2018 at 12:05

I am seeking a bit of help and advice from seasoned contributors on this website.


I noted yesterday that when I had a strong sneeze, I wet myself from the penis side despite the fact that I am on the catheter. Is this unusual? Also I had my first bowel motions which unfortunately led me to strain myself to get them out. While straining I peed on the penis side while still on the catheter. Again, is this unusual?


I have been doing pelvi floor exercises but with the above two incidents I wonder if my exercises are not working?


 


Rafael


 


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

User
Posted 27 Feb 2018 at 12:30

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2018 at 12:40
Thanks for the reassurance. Am I going to cause myself problems by doing the pelvic floor exercises while on prepubic catheter? I took it upon myself to strengthen the area in preparation for the coming Monday 6th March when I have to switch off my catheter.
I would be happy to hear the reason why I should not be doing it... I am prepared to stop if necessary. I hope I have not done any damage.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 27 Feb 2018 at 14:35
Rafael

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
User
Posted 27 Feb 2018 at 18:16
Thanks for that. I checked and I note my post-op lists of "to - do" at home says to do PFEs as soon as I am able to, and only to stop if I find it painful.
I am slightly concerned if the PFEs may disrupt the healing process at the urethra connection with the bladder?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 27 Feb 2018 at 18:54

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Mar 2018 at 12:04

I clamped the catheter at 9am this morning. 9.55am I had my first natural urination and God it sort of burned the tip of my manhood. No blood. I use Tena level 1 pad and it was dry. Second episode came at 10.35 following an urge caused when I bent down to pick up the dishcloth. It is noon now and my bladder seems to hold well. The Tena pad is still dry. The initial volumes of the two episodes this morning were 200ml and 125ml respectively.


Without speaking too soon, I am so far delighted with the continence situation. Is this what everyone initially experience? Is the worse yet to come? I am keeping a positive outlook.


I was saddened to hear of Bill Turnbull's predicament this morning and I wish him well in his battle.


Rafael


 


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

User
Posted 09 Mar 2018 at 10:07
I am pleasantly surprised at my continence situation. It is nothing like I read about or feared. I went to bed last night at 10.30pm and woke up at 6.50am without having to answer the call of nature and I think it is a pretty good achievement as a consequence of the Retzius-sparing type of robotic radical prostatectomy and it is only 2 days after the removal of my suprapubic catheter. During the day my urinal frequencies are roughly spaced between 2 and 3 hours, which is about 6-7 times a day. I am now able to avoid wetting myself when sneezing , laughing and coughing, thanks to pelvic floor exercises. I am aware it is early days yet but I am extremely happy with the outcome so far.
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.
User
Posted 09 Mar 2018 at 10:41

Good news and wish you continue to further progress well.

Barry
User
Posted 09 Mar 2018 at 12:15
May I ask where you had your Retzius-sparing prostatectomy?

NHS or private?

Who was your surgeon?

Best of luck with your recovery!
User
Posted 09 Mar 2018 at 16:52
I had the surgery on the NHS at the Royal Surrey County Hospital. I had an excellent surgeon. I understand I cannot name him in this group. You can Google and get the name. Type "Retzius-sparing robotic radical prostatectomy Royal Surrey County Hospital" and you can easily find his name.
Hope it helps.

Rafael.

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 10 Mar 2018 at 04:52

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.

User
Posted 10 Mar 2018 at 08:56
Bollinge,

If he is the same surgeon who did my prostatectomy then you are in great hands. My operation was on 19 Feb (the day after my birthday!) and today 10 March I am pad-free, walking just over 2 miles a day in my local country park. You will do well rest assured.

Good luck with your coming op and let us know how you get on.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 18 Mar 2018 at 13:53
Tomorrow (19 March) will be exactly 4 weeks after my operation and I thought I should say a bit more about my progress, especially my continence situation.
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

User
Posted 18 Mar 2018 at 15:42

Congratulations on your recovery, and best of luck for the future.
I also like to drink “plenty of fluids”.......
Cheers, John

User
Posted 29 Mar 2018 at 13:59
I thought I should record here that I am 100% pad free and on 2 April it will be my week 6 since my Retzius-sparing robotic radical prostatectomy. I have an appointment with my surgeon on 3 April both to discuss my current condition and the laboratory results on my discarded prostate gland. I am keeping my fingers crossed on the latter.
I have had approaches from a number of men via email querying about the risks of opting for Retzius-sparing robotic radical prostatectomy. I would like to state here that everyone should go for it rather than accepting other approaches advised by surgeons who are untrained in the Retzius-sparing type of prostatectomy. Like any surgery, it has consequences in terms of pain, soreness and side effects, but the Retzius-sparing method creates post-operative conditions that aids recovery more quickly and less painlessly and even less frustration. The suprapubic catheter is a great thing - it is more comfortable than the tradition penis catheter. There is no pain and no irritation. The suprapubic catheter removal is smooth and completely painless - I did not know it was even out when the nurse pulled it. Continence is fantastically normal quickly after the unlocking and removal of the catheter. The only problem I found was trying not to forget to control when sneezing, coughing and laughing during the first 3 weeks after catheter removal. Now, I am able to laugh, cough and sneeze without having to tighten my genital area - it is back to normal.
I would recommend men to go for the Retzius-sparing type if that is possible. I am only saying this based on my pleasant experience... even now I am still in awe of my surgeon's skill and professionalism and I am eternally thankful for what he has done to me.
User
Posted 29 Mar 2018 at 14:20
Originally Posted by: Online Community Member

I have had approaches from a number of men....


I suggest you decline their advances until you are fully recuperated, then if you fancy that kind of thing, go for it!😂😂😂😂😂😂

Edited by member 29 Mar 2018 at 14:21  | Reason: Not specified

User
Posted 29 Mar 2018 at 14:32
Very funny!
As for recuperation, I have booked to go to Barbados for a month from 14 April.

Rafael
User
Posted 29 Mar 2018 at 14:46

That kind of marlarkey might get you into trouble in Barbados, as they are quite conservative.

You might however sample Mount Gay or Cockspur if you are now tending towards that kind of lifestyle following your recent emasculation!

Edited by member 29 Mar 2018 at 14:55  | Reason: Not specified

User
Posted 29 Mar 2018 at 14:51

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2018 at 15:00

Matron, do you even know what Mount Gay and Cockspur are?

Barbados rums!

Lighten up! We who have cancer have to have as many laughs as possible for as long as possible.

User
Posted 29 Mar 2018 at 15:35
It will be my 8th holiday in Barbados, staying in the Holetown area. Mount Gay rum is actually good rum, best enjoyed when poured over two ice cubes in a tumbler. My wife loves Skipper's Mistress cocktail served at The Drift, next to the Beach House.
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

User
Posted 29 Mar 2018 at 17:39

Holetown, the posh part!

My favourite rum drink is a Cuba Libre. Mount Gay or Cockspur over ice with a few drops of Angostura and a quarter of lime, topped up with Coke.

Have a great trip!

User
Posted 30 Mar 2018 at 14:39

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.

User
Posted 30 Mar 2018 at 14:39

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.

User
Posted 30 Mar 2018 at 15:50
Hi. I was administered morphine in the recovery room to counter the pain to the incision above my belly button. It immediately worked after several seconds.
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.
 
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