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The blasted decision!

User
Posted 19 Sep 2018 at 06:55

Hello everyone,

 

This is my first post.  In July diagnosed with:

Gleason 9

PSA: 8.3 before diagnosis

MRI shows bilateral disease in 15 sites with one 11mm tumour.

Biopsy: aggressive cancer in multiple sites

PSMA PET scan shows localized in prostate

Age:  59

My Surgeon recommends RRP with possible RT/Hormone follow up.

My Radiotherapist at the Royal Marsden says surgery or RT are both good options for me, but Surgery may have a very slightly better outcome because it is possible it may result in a clean extraction without the need for  follow up RT.  So, its largely down to the side effects and treatment regime.

Surgery-related incontinence and the recovery time are putting me off, although the idea of getting rid of the damn thing asap appeals.  RT offers more flexibility in treatment and more manageable side effects.  I am  a freelance marketing consultant and project manager, and I work from home and travel a lot on business, but work cannot stop for long.

Any thoughts would be greatly appreciated as I wrangle this huge new beast in my life.

Thank you all.

 

Edited by moderator 19 Sep 2018 at 08:28  | Reason: Can't name health professionals

User
Posted 04 Oct 2018 at 06:10

Thank you all for your advice, which I considered and was very helpful.  My silence is because I made my decision and am now in recovery mode.  In the interests of helping others through the process, I am posting below a blog of the process I went through, from diagnosis to treatment, with more to follow as my adventure unfolds.  I hope others following in my footsteps find it helpful, as I have found all the  experiences related in this forum. (Doctors names redacted per  the requirements of this forum)

THE DIAGNOSIS

Men are told the first symptom of a prostate issue is usually the need to get up several times a night to pee, or difficulty peeing generally.  As we all know, peeing is at best imprecise and can be affected by factors such as diverse as the dodgy looking bloke standing in the adjacent urinal, ambient air temperature, someone telling you to hurry up or the amount of beers consumed.  Secondarily, and apparently equally inconclusive, is the dreaded finger-up-the-bum test that would reveal an ominous swelling.  Fellow men be warned - neither of these were true for me.  I was a symptomless 59 year old male who had, quite randomly, decided to see my Doctor for a general health check.  He listened as I answered a barrage of questions and diligently noted all my answers.  He gave me an EKG - all ticking away nicely.  The bum-finger test - fine too.  So off I went.  Two days later he called and said “Just one thing …, you have an elevated PSA.  It’s 6 and it should be no more than about 4.”  He suggested we keep an eye on this, and that I should return for another test in a few weeks time to see if it had moved.  

“There’s definitely something going on” he began, six weeks later. “Your PSA has jumped to 8.3.”  Things went progressively downhill from there, and I had a consultation with a urologist, a CT scan and a biopsy, all in quick succession.  The biopsy involved general anesthetic and was painless, but it caused some bruising that made me look as if I had been gored in the balls by a buffalo and I peed pink for a few days, but that was it.  The outcome, however, was not good.  Not only was my cancer extensive, but aggressive -  punching above its weight with 9 out of a possible 10 on the Prostate Shitstorm Scale (otherwise known as the Gleason Scale).

 The next critical step was to see if it had spread beyond the prostate or was contained within its walls, so I trotted off to have what I called a Chernobyl Scan (PET scan).  Basically they inject you with a radioactive liquid designed to specifically light up only prostate cancer cells (how do they DO this??), then they pop you through a very expensive doughnut a few times and send you off with a slightly ominous warning not to go anywhere near babies and pregnant women for at least seven hours. I zig-zagged off down the street, furtively avoiding prams and woman of child-bearing age.

Thankfully, the results showed that my cancer was contained - the first good news I had had in a few weeks.  I needed to lose weight, pronto, so I had started a regime of running every day, a low carb diet and cut right back on drinking.  Nothing like an impending surgery to focus the mind,

DECISION  TIME

The decision about which treatment route to take is where the ball comes back and lands firmly in one's lap, because no one will make this decision for you.  Every case is, of course, different but usually involves surgery and/or a radiotherapy/hormone treatment combo, so it is important to see both a radiologist and a surgeon.  Surgeons generally want to put you under the knife; Radiologists generally don’t.  The first Radiologist I saw scored low.  He gave me about ten minutes of his time and simply rubber-stamped the surgeons recommended course of action (removal, probably followed by hormone treatment and radiotherapy) without taking the trouble to consider, discuss and inform me of all the nuances.  It turns out there are many.

Less than impressed, and always one to take a rubber stamp with a pinch of suspicion,  I managed to wrangle a referral to DD, esteemed Professor of Uro-oncology at the famous Royal Marsden Hospital, London.  There are few boards he has not chaired, or letters he does not have trailing his name.  He is a legend in the profession and his numerous papers and studies have been published worldwide.  A nicer and more forthright man you could not hope to meet, but as getting a meeting with the Dalai Lama would be considerably easier, I felt very fortunate to find myself sitting in front of him four days later.  “You are lucky” he began,  smiling “if not for an unexpected change in my teaching schedule, I would not have been able to see you for weeks”. He listened, looked at all my reports, made copious notes, histological analyses and calculations, asked questions and was in all regards extremely thorough and considered.  

We discussed at length the pros and cons of each treatment option. Surgery was certainly a good option as I could possibly get the entire cancer removed before it spread.  Additionally,  the results were measurable via PSA and, if it turned out I had traces that recurred down the line,  they could be effectively treated with radiotherapy.  The side effects of surgery were more extreme and trickier to manage (extended incontinence, probably; sex, probably not), but overall the treatment process was faster.

Hormone/Radiotherapy was also a good option.  Treatments were now highly advanced and of pinpoint accuracy, the side effects were somewhat less aggressive and more manageable (with more likelihood of some sex) and the success rate high, even for cases like mine.  The PSA level would no longer be a viable indicator of being clear and if it did not work, and surgery would be off the table as a back-up. Treatment was lengthy, possibly as long as two years.

Eventually, he said that in my case,  he would very slightly err on the side of surgery, because I had the chance to get it all out in one fell swoop. So, ninety minutes of his valuable time later, I got up to leave.  As I opened the door he said  “Just one more thing - you should look at it like this:  In your case, it's like trying to decide between buying a Mercedes or a BMW.  There is no bad decision, they are just different, and it comes down to which you feel suits you better.”  

THE SURGERY

Nothing about this is easy, and all of it is deadly serious, but even in the darkly ominous process of discovery and treatment, there are glimmers of light and, occasionally, even humour.  Another positive - I had lost about 30lbs (2 stone) as a result of my exercise and diet,  which pleased Dearly Beloved no-end, and friends looked at me as if I had just produced a large rabbit from my hat.  

I spoke at length to my wise GP, to expert radiologists at Cornell (for an American opinion) and also to a past patient of my surgeon’s, whose case was similar to mine and who opted for surgery.   I heard all the first-hand details, and sex (or lack of it) and incontinence both featured prominently.  Having had many years of extensive rogering under my belt, the prospect of having that little avenue of pleasure denied me was, on balance, not one that especially concerned me at age 60.  I vacillated wildly for about 36 hours, before deciding on surgery and, having made the decision, I was able to relax and go with the flow, all doubt assuaged.   

I spent the week girding my loins (literally) and having vast quantities of blood and swabs taken in preparation for admission, lest I be unknowing host to some dreaded lurgy.  A kindly and knowledgeable male nurse talked me through the experience step by step, from admission to full recovery.  This was both comforting and alarming in equal degrees. Comforting because I knew what to expect;  alarming because what I was now expecting initially involved being tilted, head-down at a 45 degree angle as six incisions are made in my abdomen, which is then pumped full of Co2 to push my intestines out of the way to get me ready for an encounter with the robotic equivalent of the six-armed Hindu Goddess Durga, but more on that later.

On admission to hospital, my surgeon came to see me.  xxxxx is regarded as one of the top urological surgeons in the UK, and absolutely the gold standard when it comes to the Radical Robotic Prostatectomy (RRP) I was about to have.  Normally a serious and reserved man, today he was positively bouncing with excitement, his face lit up with a huge smile and his bushy eyebrows twitching like furry antenna.   He breezily ran through all the possible complications,  including bad-Robot scenario, which would result in an immediate switch to conventional open-surgery.  I shot him a look of mild hysteria, hoping the robot was more Apple than Microsoft.  “Don’t worry” he said “it will all be quite all-right” as he patted me encouragingly on the leg.  “I will see you after surgery to tell you all about it -  but you won't remember a thing I say.”.  He beamed at me again and scurried excitedly away.   “Extraordinary”, I said to Dearly Beloved, “I have never seen him like that before”.  “This is the bit he loves doing more than anything else” she replied, sagely.  

A nurse walked me down the corridor to what looked like the bridge of the Heart of Gold spaceship from the Hitchhikers Guide to The Galaxy.  Bright blue light saturated the entranceway to the “Hybrid Theatre” as the glass doors swooshed open in a way Douglas Adams would have particularly admired and I was ushered into the prep room, the floor of which had been painted an especially improbable shade of neon green.   I was busy pondering the reason for this alarming color choice, as the delightfully charming and chatty lady anesthetist talked me through the epidural and other things she was going to …

Five hours later, I awoke to find myself mysteriously back in the hospital room I started in, the only immediately noticeable difference being that my tongue no longer appeared to be attached to my brain and I had an annoyingly urgent but unfulfillable need to blow a massive fart.   Tubes connected me to several machines that went beep and Dearly Beloved hovered about, trying to get me to drink some liquid. or other.    

The da Vinci Surgical System is a robot made by the American company Intuitive Surgical. It is “designed to facilitate complex surgery using a minimally invasive approach” (more commonly known as the five-small-holes-instead-of-one-bloody-big-one approach).  It is controlled by Mr. xxxxx from a console the other side of the room, into which sticks his head and enters the 4K, 3D world of my abdomen.  Manipulating five interchangeably weaponized robotic arms with astounding accuracy,  he then pretty much plays a video game with my prostate as the enemy.  The system costs about US$2 million and is probably the most fun a surgeon can have with his clothes on. Here is a video of it stitching a grape skin back together.  

The feeling of having been minimally invaded by a robot with six arms is a curious one. There are six small plasters covering the holes around my navel and I am conscious of a vague sense that deep rummaging has occurred in places that have never before experienced a deep rummage.  Movement is not easy and, taking a look under the sheets, I see a tube has been deliberately placed where one should never normally consider putting any sort of tube - especially one of such startling girth. Clearly, this entire procedure involves a lot of firsts for me, I thought, as I vigorously pumped the machine labeled “press here for intravenous heroin”

RECOVERY - Phase One

Recovery was more about discomfort than pain and involved - at least initially -  hot-and-cold running drugs with a street price close to the healthcare budget of a small African nation, farting volumes of Co2, a nice little present from the Conran Shop, farting more Co2 and several quite good creme brûlées, artistically arranged inside a hollowed out half-orange in an attempt to win some obscure award for hospital catering excellence.  Dearly Beloved, in between considerate ministrations,  marched me up and down steps and along corridors until my body promised not to be sore anymore as long as she would just stop.  By day three I was pretty mobile and ready to go home.  They say two days in hospital is fine for an RRP.  They are wrong - you really benefit from that extra night.

Now I am home in Battersea, which is nice, getting used to living with Mr. Catheter.   Thankfully no real pain, but plenty of discomfort, as my bowels, bladder, willy and lower abdomen try and come to terms with their robotic assault.  Mr. Catheter and I have been for a walk by the river and by all accounts seem to be well on the way to recovery - notwithstanding the occasional very sudden and sharp reminder that he is there.  Walking involves adopting the posture of an octogenarian man with a very bitey ferret down his trousers, which happens to be asleep but could wake up at any moment and, on waking, would likely to be both hungry and agitated.  The importance of walking in a way that would not disturb said ferret cannot be sufficiently emphasized.  Of course, walking in public places carries with it enhanced risks, such as the need to suddenly avoid reckless skateboarders and bicyclists  or deal with being greeted by a young and bouncy golden retriever who has decided you might just possibly have a ferret in your crotch that requires urgent investigation and to whom the concept of asking permission is entirely foreign.  This is an extremely bad scenario so one must carry bear-spray and be on Def-Con One at all times.  Other than that, all good.

So as I in equal measures take it easy, indulge in the occasional snooze, get some work done and walk gently along the riverbank and park with kind friends, Dearly Beloved disappears for hours-on-end to a succession of missions, interspersed with lunches and knee-polishing appointments.  She returns to our nest like a magpie bearing the sparkly-spoils of London - a rather nice fish-pie from the fishmonger in Bute Street, a dressing gown I needed, some delicious cheese from a Marylebone Road cheesemonger, a spare catheter bag.  Life, one could argue, is relatively normal.

I cannot help but be struck by my good fortune.  Were it not for my random medical check-up back in April, I would be still wandering around, feeling perfectly fit and blissfully unaware that deep inside me a virulent cancer was exploding out of my nether regions.  For heaven's sake get a blood test, gents.  Every year.

To be continued ….

 

 

User
Posted 19 Sep 2018 at 09:42

Hi,

I was in a very similar situation, Gleason 9 etc.  I put the medical details in my profile.  I opted for the RRP and had the operation 3 months ago.  As you say, the different treatments appear to give similar survivability.  I believe the side effects aren't hugely different either.  my decision came down to 2 factors.  If you manage to get a clean extraction then you have a better outcome than RT. And you can have RT as a back up, while there is no option to fall back to surgery.  I have read one book that suggests removing the source of the cancer is a huge benefit (Dr. Patrick Walsh's guide to surviving Prostate Cancer).

Recovery time from surgery was quite quick.  My wife had to stop me from doing any lifting for the required period.  After about 2 weeks fully active except for lifting.  Incontinence was dreary but manageable.  Every case is a bit different, but in mine, I think I am probably on course for being completely continent 4 to 6 months after the operation.  I am sure I would have managed travel and customer meetings after about a month or so.

Happy to answer any specific questions.  I felt a lot better after I made the decision and focussed on getting on with it.

Good luck,   Alan

 

User
Posted 19 Sep 2018 at 14:43
Hi Wobbly Badger

I had RARP Jan 17. I was off work five weeks and was using one light pad mainly just for security by then. No pads at all after 7 weeks ish.

I could easily have worked from home after 3 weeks but I think I was lucky in that respect.

I was gleeson 3+4, t2c with extra capsular extinsion found during op so also nerve sparing only right side and upgraded to t3a. (Microscopic negative margins)

ED still an issue after 20 months but some signs of life returning with medication.

PSA currently undetectable.

So, still hoping ED improves but with t3a and extracapsular extension although I still wasnt sure which way to go even right up to the aneasetic I think it turned out to be the right decision for me.

All the best with whichever you choose

Cheers

Bill

User
Posted 19 Sep 2018 at 16:26
Hi Richard,

Only you can decide the way to go and we are not in a position to suggest which way would be best. We can tell you what treatment we had and how it worked for us but seldom are two cases and circumstances quite the same and success of treatment and extent of side events even then may vary from one man to another. It doesn't make it any easier I know but reading about the treatments in more detail may help. In this connection I would recommend you download or obtain a hard copy of the 'Toolkit', available from the publication department of this charity.

You are in good hands at the highly respected Royal Marsden.

Do let us know what you decide and how it works out for you.

Barry
User
Posted 19 Sep 2018 at 18:10
I remember for weeks indeed months I could not decide between Hormone Therapy and Radiotherapy or Robotic Surgery. In the end after countless discussions with Doctors and Family I decided on Surgery which I had 8 days ago at the Christie Hospital. I am relatively young at 57 and the OP went well and so far side effects are minimal .We are all different and age and health play a big part. I had my catheter removed after 7 days yesterday and so far wearing pads but largely in control. I think as Alan has aluded to for myself and my wife removing the source of the cancer has psychological benefits but there is no right or wrong treatment, only what feels right fir you

Take your time ask lots of questions.

Wishing you all the best with whichever you choose

Paul

User
Posted 19 Sep 2018 at 19:52
I was told I was fine to drive by my GP if I felt ok. In my experience insurers will take any route they possible can always to renege on their side of the deal. They are basically modern day highway robbers and it grieves me that by law we have to pay them. If you’re on any prescription drug whatsoever that advises about driving , then you’re not covered believe me. But it seems it’s ok to be as blind as a bat ( although they’re working on this ) , or off your head on cannabis and the like. I bl***dy despise insurance companies as you may have guessed lol

If life gives you lemons , then make lemonade

User
Posted 19 Sep 2018 at 22:36

Hi Wobblybadger,  

It seems all your medically qualified advisers are saying have an operation.   It needs a pre-operation check which takes half a day followed by usually 2 days in hospital.   A week with a catheter and it's really better to take rest although you could work from home and go out if it didn't involve a lot of walking or lifting.  My wife drove me around, although I'm retired and it was just the shops.

Then you might find you need pads but as long as you keep spares by week 3 you should be out and about being sensible about it.  I drove when I could press the clutch and brake without pain which I seem to think was about a month. I'm not sure if I asked the insurance company although at the time I did ask them about holiday cover as we flew to Australia for a month 8 weeks after the operation.

It seemed to me that having hormones and then 30 days of RT was more inconvenient than the op although I believe, perhaps not always rightly, that removing the main tumour gets rid of the big source right away.

 

User
Posted 04 Oct 2018 at 07:40

W

That brings back a few memories. Great post.

Thanks Chris

Show Most Thanked Posts
User
Posted 19 Sep 2018 at 08:44
Robotic surgery recovery is supposed to be pretty quick recovery. They will also probably take a few lymph nodes so you will get a better confirmation of staging.

Interesting the onco is recommending surgery probably confirms it is the correct choice as it's usually urologists who like the knife!

You probably need to get your head around the fact that all the treatments will impact your life and your schedule for a while.

User
Posted 19 Sep 2018 at 08:51
Thank you. Yes, I am realising that I probably need to man-up about the side effects and just figure out a way to deal with them, if that's the way I decide to go. Appreciate your thoughts.
User
Posted 19 Sep 2018 at 09:18
Does your work increase and decrease in seasons? If you opt for RT then it will not start until 3 or 6 months from now. Also, was the onco looking at 37 sessions of RT or 20 sessions? 7 weeks of radiotherapy every day plus at least a couple of weeks of fatigue afterwards is not going to be any easier to manage as a self employed person than 6 - 12 weeks recovery after surgery.

Re surgery, is the surgeon offering nerve sparing?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2018 at 09:21
It’s a horrible choice to have to make, isn’t it? I was fortunate in that although my PCa is localised (T2C N0 M0 G3+4) everyone involved agreed that HT+RT was the preferred route for me, which matched my own preferences.

Very best of luck, whichever way your decision goes.

Chris

User
Posted 19 Sep 2018 at 09:42

Hi,

I was in a very similar situation, Gleason 9 etc.  I put the medical details in my profile.  I opted for the RRP and had the operation 3 months ago.  As you say, the different treatments appear to give similar survivability.  I believe the side effects aren't hugely different either.  my decision came down to 2 factors.  If you manage to get a clean extraction then you have a better outcome than RT. And you can have RT as a back up, while there is no option to fall back to surgery.  I have read one book that suggests removing the source of the cancer is a huge benefit (Dr. Patrick Walsh's guide to surviving Prostate Cancer).

Recovery time from surgery was quite quick.  My wife had to stop me from doing any lifting for the required period.  After about 2 weeks fully active except for lifting.  Incontinence was dreary but manageable.  Every case is a bit different, but in mine, I think I am probably on course for being completely continent 4 to 6 months after the operation.  I am sure I would have managed travel and customer meetings after about a month or so.

Happy to answer any specific questions.  I felt a lot better after I made the decision and focussed on getting on with it.

Good luck,   Alan

 

User
Posted 19 Sep 2018 at 10:10

Thanks Alan, this is hugely helpful!  I too am feeling that a clean extraction is worth shooting for, and  I just need to bite the bullet as regards the inconvenience of side effects.  I appreciate your thoughts.  Richard

 

User
Posted 19 Sep 2018 at 10:12

Thanks Lyn.  The Onco said 20  sessions with HT for a year  or more.  The surgery is nerve sparing but likely only possible on one side.  R

User
Posted 19 Sep 2018 at 14:43
Hi Wobbly Badger

I had RARP Jan 17. I was off work five weeks and was using one light pad mainly just for security by then. No pads at all after 7 weeks ish.

I could easily have worked from home after 3 weeks but I think I was lucky in that respect.

I was gleeson 3+4, t2c with extra capsular extinsion found during op so also nerve sparing only right side and upgraded to t3a. (Microscopic negative margins)

ED still an issue after 20 months but some signs of life returning with medication.

PSA currently undetectable.

So, still hoping ED improves but with t3a and extracapsular extension although I still wasnt sure which way to go even right up to the aneasetic I think it turned out to be the right decision for me.

All the best with whichever you choose

Cheers

Bill

User
Posted 19 Sep 2018 at 16:26
Hi Richard,

Only you can decide the way to go and we are not in a position to suggest which way would be best. We can tell you what treatment we had and how it worked for us but seldom are two cases and circumstances quite the same and success of treatment and extent of side events even then may vary from one man to another. It doesn't make it any easier I know but reading about the treatments in more detail may help. In this connection I would recommend you download or obtain a hard copy of the 'Toolkit', available from the publication department of this charity.

You are in good hands at the highly respected Royal Marsden.

Do let us know what you decide and how it works out for you.

Barry
User
Posted 19 Sep 2018 at 16:45
If you need to drive to get to clients etc, ask your motor insurers when they will cover you post-op. For keyhole RP most will cover you from 6 weeks post-op but my husband had open surgery and his insurer would not cover him until 12 weeks and only with a letter from his surgeon confirming he was fit to drive. So although he could have worked at the office from about week 10, he couldnt actually get there. He was working from home from about week 5-6 I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2018 at 17:09
That's interesting, Lyn. As you know I had major abdominal surgery on 1st September, and I asked about driving when I was in hospital. They told me that the only legal requirement was that I had to be able to safely do an emergency stop, and it was up to me to decide when I was fit enough to do that. I was driving around the village about 10 days after surgery.

Chris

User
Posted 19 Sep 2018 at 18:10
I remember for weeks indeed months I could not decide between Hormone Therapy and Radiotherapy or Robotic Surgery. In the end after countless discussions with Doctors and Family I decided on Surgery which I had 8 days ago at the Christie Hospital. I am relatively young at 57 and the OP went well and so far side effects are minimal .We are all different and age and health play a big part. I had my catheter removed after 7 days yesterday and so far wearing pads but largely in control. I think as Alan has aluded to for myself and my wife removing the source of the cancer has psychological benefits but there is no right or wrong treatment, only what feels right fir you

Take your time ask lots of questions.

Wishing you all the best with whichever you choose

Paul

User
Posted 19 Sep 2018 at 18:52

Originally Posted by: Online Community Member
That's interesting, Lyn. As you know I had major abdominal surgery on 1st September, and I asked about driving when I was in hospital. They told me that the only legal requirement was that I had to be able to safely do an emergency stop, and it was up to me to decide when I was fit enough to do that. I was driving around the village about 10 days after surgery.

Chris

Most companies have a T&C that you must inform them of any medical condition or other change in circumstance - if that didn't apply to your policy you are very fortunate. But medical people tend not to be experts in law or insurance just as most loss adjusters are not experts on cancer. So while it is good that you felt able to drive around, did you actually inform your insurer? If not, it may be very very fortuitous that you did not have an accident and find yourself charged with driving without insurance. 

Edited by member 19 Sep 2018 at 18:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2018 at 19:03
No, I didn't. Guess I'd better check my policy! Thanks for the "heads up".

Chris

User
Posted 19 Sep 2018 at 19:12

Just read my insurance policy from cover to cover, Lyn (I'm insured through a subsidiary of Aviva) and there's no mention whatsoever of medical conditions in it. I have to notify them of criminal convictions, etc, but not medical conditions. That would, therefore, seem to leave it down to the DVLA’s guidance on the matter:

https://www.gov.uk/health-conditions-and-driving

There’s nothing I can find there which would prevent me from driving. In the section called “Surgery and Driving” it simply says “Ask your doctor if you’re not sure how your operation will affect your driving.”, which is exactly what I did do, and was told that I could drive as soon as I could safely perform an emergency stop.

Chris

Edited by member 19 Sep 2018 at 19:44  | Reason: Not specified

User
Posted 19 Sep 2018 at 19:52
I was told I was fine to drive by my GP if I felt ok. In my experience insurers will take any route they possible can always to renege on their side of the deal. They are basically modern day highway robbers and it grieves me that by law we have to pay them. If you’re on any prescription drug whatsoever that advises about driving , then you’re not covered believe me. But it seems it’s ok to be as blind as a bat ( although they’re working on this ) , or off your head on cannabis and the like. I bl***dy despise insurance companies as you may have guessed lol

If life gives you lemons , then make lemonade

User
Posted 19 Sep 2018 at 20:01
I am with LV and informed them of a medical condition, in line with my policy. They said that they had noted it on my record and confirmed I was covered. If it is a requirement then it seems a no brainer to inform and be covered rather than give the insurer an opportunity to wriggle out of their obligation in the event of a claim. If it isn’t in your Ts & Cs then no problem but I find it fascinating that not everyone thinks to check.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2018 at 20:10
It honestly never occurred to me that an insurer might have their own rules over and above those issued by the DVLA, Lyn, but I’m glad you pointed out the possibility and prompted me to check my policy, so thanks for that.

Chris

User
Posted 19 Sep 2018 at 22:36

Hi Wobblybadger,  

It seems all your medically qualified advisers are saying have an operation.   It needs a pre-operation check which takes half a day followed by usually 2 days in hospital.   A week with a catheter and it's really better to take rest although you could work from home and go out if it didn't involve a lot of walking or lifting.  My wife drove me around, although I'm retired and it was just the shops.

Then you might find you need pads but as long as you keep spares by week 3 you should be out and about being sensible about it.  I drove when I could press the clutch and brake without pain which I seem to think was about a month. I'm not sure if I asked the insurance company although at the time I did ask them about holiday cover as we flew to Australia for a month 8 weeks after the operation.

It seemed to me that having hormones and then 30 days of RT was more inconvenient than the op although I believe, perhaps not always rightly, that removing the main tumour gets rid of the big source right away.

 

User
Posted 04 Oct 2018 at 06:10

Thank you all for your advice, which I considered and was very helpful.  My silence is because I made my decision and am now in recovery mode.  In the interests of helping others through the process, I am posting below a blog of the process I went through, from diagnosis to treatment, with more to follow as my adventure unfolds.  I hope others following in my footsteps find it helpful, as I have found all the  experiences related in this forum. (Doctors names redacted per  the requirements of this forum)

THE DIAGNOSIS

Men are told the first symptom of a prostate issue is usually the need to get up several times a night to pee, or difficulty peeing generally.  As we all know, peeing is at best imprecise and can be affected by factors such as diverse as the dodgy looking bloke standing in the adjacent urinal, ambient air temperature, someone telling you to hurry up or the amount of beers consumed.  Secondarily, and apparently equally inconclusive, is the dreaded finger-up-the-bum test that would reveal an ominous swelling.  Fellow men be warned - neither of these were true for me.  I was a symptomless 59 year old male who had, quite randomly, decided to see my Doctor for a general health check.  He listened as I answered a barrage of questions and diligently noted all my answers.  He gave me an EKG - all ticking away nicely.  The bum-finger test - fine too.  So off I went.  Two days later he called and said “Just one thing …, you have an elevated PSA.  It’s 6 and it should be no more than about 4.”  He suggested we keep an eye on this, and that I should return for another test in a few weeks time to see if it had moved.  

“There’s definitely something going on” he began, six weeks later. “Your PSA has jumped to 8.3.”  Things went progressively downhill from there, and I had a consultation with a urologist, a CT scan and a biopsy, all in quick succession.  The biopsy involved general anesthetic and was painless, but it caused some bruising that made me look as if I had been gored in the balls by a buffalo and I peed pink for a few days, but that was it.  The outcome, however, was not good.  Not only was my cancer extensive, but aggressive -  punching above its weight with 9 out of a possible 10 on the Prostate Shitstorm Scale (otherwise known as the Gleason Scale).

 The next critical step was to see if it had spread beyond the prostate or was contained within its walls, so I trotted off to have what I called a Chernobyl Scan (PET scan).  Basically they inject you with a radioactive liquid designed to specifically light up only prostate cancer cells (how do they DO this??), then they pop you through a very expensive doughnut a few times and send you off with a slightly ominous warning not to go anywhere near babies and pregnant women for at least seven hours. I zig-zagged off down the street, furtively avoiding prams and woman of child-bearing age.

Thankfully, the results showed that my cancer was contained - the first good news I had had in a few weeks.  I needed to lose weight, pronto, so I had started a regime of running every day, a low carb diet and cut right back on drinking.  Nothing like an impending surgery to focus the mind,

DECISION  TIME

The decision about which treatment route to take is where the ball comes back and lands firmly in one's lap, because no one will make this decision for you.  Every case is, of course, different but usually involves surgery and/or a radiotherapy/hormone treatment combo, so it is important to see both a radiologist and a surgeon.  Surgeons generally want to put you under the knife; Radiologists generally don’t.  The first Radiologist I saw scored low.  He gave me about ten minutes of his time and simply rubber-stamped the surgeons recommended course of action (removal, probably followed by hormone treatment and radiotherapy) without taking the trouble to consider, discuss and inform me of all the nuances.  It turns out there are many.

Less than impressed, and always one to take a rubber stamp with a pinch of suspicion,  I managed to wrangle a referral to DD, esteemed Professor of Uro-oncology at the famous Royal Marsden Hospital, London.  There are few boards he has not chaired, or letters he does not have trailing his name.  He is a legend in the profession and his numerous papers and studies have been published worldwide.  A nicer and more forthright man you could not hope to meet, but as getting a meeting with the Dalai Lama would be considerably easier, I felt very fortunate to find myself sitting in front of him four days later.  “You are lucky” he began,  smiling “if not for an unexpected change in my teaching schedule, I would not have been able to see you for weeks”. He listened, looked at all my reports, made copious notes, histological analyses and calculations, asked questions and was in all regards extremely thorough and considered.  

We discussed at length the pros and cons of each treatment option. Surgery was certainly a good option as I could possibly get the entire cancer removed before it spread.  Additionally,  the results were measurable via PSA and, if it turned out I had traces that recurred down the line,  they could be effectively treated with radiotherapy.  The side effects of surgery were more extreme and trickier to manage (extended incontinence, probably; sex, probably not), but overall the treatment process was faster.

Hormone/Radiotherapy was also a good option.  Treatments were now highly advanced and of pinpoint accuracy, the side effects were somewhat less aggressive and more manageable (with more likelihood of some sex) and the success rate high, even for cases like mine.  The PSA level would no longer be a viable indicator of being clear and if it did not work, and surgery would be off the table as a back-up. Treatment was lengthy, possibly as long as two years.

Eventually, he said that in my case,  he would very slightly err on the side of surgery, because I had the chance to get it all out in one fell swoop. So, ninety minutes of his valuable time later, I got up to leave.  As I opened the door he said  “Just one more thing - you should look at it like this:  In your case, it's like trying to decide between buying a Mercedes or a BMW.  There is no bad decision, they are just different, and it comes down to which you feel suits you better.”  

THE SURGERY

Nothing about this is easy, and all of it is deadly serious, but even in the darkly ominous process of discovery and treatment, there are glimmers of light and, occasionally, even humour.  Another positive - I had lost about 30lbs (2 stone) as a result of my exercise and diet,  which pleased Dearly Beloved no-end, and friends looked at me as if I had just produced a large rabbit from my hat.  

I spoke at length to my wise GP, to expert radiologists at Cornell (for an American opinion) and also to a past patient of my surgeon’s, whose case was similar to mine and who opted for surgery.   I heard all the first-hand details, and sex (or lack of it) and incontinence both featured prominently.  Having had many years of extensive rogering under my belt, the prospect of having that little avenue of pleasure denied me was, on balance, not one that especially concerned me at age 60.  I vacillated wildly for about 36 hours, before deciding on surgery and, having made the decision, I was able to relax and go with the flow, all doubt assuaged.   

I spent the week girding my loins (literally) and having vast quantities of blood and swabs taken in preparation for admission, lest I be unknowing host to some dreaded lurgy.  A kindly and knowledgeable male nurse talked me through the experience step by step, from admission to full recovery.  This was both comforting and alarming in equal degrees. Comforting because I knew what to expect;  alarming because what I was now expecting initially involved being tilted, head-down at a 45 degree angle as six incisions are made in my abdomen, which is then pumped full of Co2 to push my intestines out of the way to get me ready for an encounter with the robotic equivalent of the six-armed Hindu Goddess Durga, but more on that later.

On admission to hospital, my surgeon came to see me.  xxxxx is regarded as one of the top urological surgeons in the UK, and absolutely the gold standard when it comes to the Radical Robotic Prostatectomy (RRP) I was about to have.  Normally a serious and reserved man, today he was positively bouncing with excitement, his face lit up with a huge smile and his bushy eyebrows twitching like furry antenna.   He breezily ran through all the possible complications,  including bad-Robot scenario, which would result in an immediate switch to conventional open-surgery.  I shot him a look of mild hysteria, hoping the robot was more Apple than Microsoft.  “Don’t worry” he said “it will all be quite all-right” as he patted me encouragingly on the leg.  “I will see you after surgery to tell you all about it -  but you won't remember a thing I say.”.  He beamed at me again and scurried excitedly away.   “Extraordinary”, I said to Dearly Beloved, “I have never seen him like that before”.  “This is the bit he loves doing more than anything else” she replied, sagely.  

A nurse walked me down the corridor to what looked like the bridge of the Heart of Gold spaceship from the Hitchhikers Guide to The Galaxy.  Bright blue light saturated the entranceway to the “Hybrid Theatre” as the glass doors swooshed open in a way Douglas Adams would have particularly admired and I was ushered into the prep room, the floor of which had been painted an especially improbable shade of neon green.   I was busy pondering the reason for this alarming color choice, as the delightfully charming and chatty lady anesthetist talked me through the epidural and other things she was going to …

Five hours later, I awoke to find myself mysteriously back in the hospital room I started in, the only immediately noticeable difference being that my tongue no longer appeared to be attached to my brain and I had an annoyingly urgent but unfulfillable need to blow a massive fart.   Tubes connected me to several machines that went beep and Dearly Beloved hovered about, trying to get me to drink some liquid. or other.    

The da Vinci Surgical System is a robot made by the American company Intuitive Surgical. It is “designed to facilitate complex surgery using a minimally invasive approach” (more commonly known as the five-small-holes-instead-of-one-bloody-big-one approach).  It is controlled by Mr. xxxxx from a console the other side of the room, into which sticks his head and enters the 4K, 3D world of my abdomen.  Manipulating five interchangeably weaponized robotic arms with astounding accuracy,  he then pretty much plays a video game with my prostate as the enemy.  The system costs about US$2 million and is probably the most fun a surgeon can have with his clothes on. Here is a video of it stitching a grape skin back together.  

The feeling of having been minimally invaded by a robot with six arms is a curious one. There are six small plasters covering the holes around my navel and I am conscious of a vague sense that deep rummaging has occurred in places that have never before experienced a deep rummage.  Movement is not easy and, taking a look under the sheets, I see a tube has been deliberately placed where one should never normally consider putting any sort of tube - especially one of such startling girth. Clearly, this entire procedure involves a lot of firsts for me, I thought, as I vigorously pumped the machine labeled “press here for intravenous heroin”

RECOVERY - Phase One

Recovery was more about discomfort than pain and involved - at least initially -  hot-and-cold running drugs with a street price close to the healthcare budget of a small African nation, farting volumes of Co2, a nice little present from the Conran Shop, farting more Co2 and several quite good creme brûlées, artistically arranged inside a hollowed out half-orange in an attempt to win some obscure award for hospital catering excellence.  Dearly Beloved, in between considerate ministrations,  marched me up and down steps and along corridors until my body promised not to be sore anymore as long as she would just stop.  By day three I was pretty mobile and ready to go home.  They say two days in hospital is fine for an RRP.  They are wrong - you really benefit from that extra night.

Now I am home in Battersea, which is nice, getting used to living with Mr. Catheter.   Thankfully no real pain, but plenty of discomfort, as my bowels, bladder, willy and lower abdomen try and come to terms with their robotic assault.  Mr. Catheter and I have been for a walk by the river and by all accounts seem to be well on the way to recovery - notwithstanding the occasional very sudden and sharp reminder that he is there.  Walking involves adopting the posture of an octogenarian man with a very bitey ferret down his trousers, which happens to be asleep but could wake up at any moment and, on waking, would likely to be both hungry and agitated.  The importance of walking in a way that would not disturb said ferret cannot be sufficiently emphasized.  Of course, walking in public places carries with it enhanced risks, such as the need to suddenly avoid reckless skateboarders and bicyclists  or deal with being greeted by a young and bouncy golden retriever who has decided you might just possibly have a ferret in your crotch that requires urgent investigation and to whom the concept of asking permission is entirely foreign.  This is an extremely bad scenario so one must carry bear-spray and be on Def-Con One at all times.  Other than that, all good.

So as I in equal measures take it easy, indulge in the occasional snooze, get some work done and walk gently along the riverbank and park with kind friends, Dearly Beloved disappears for hours-on-end to a succession of missions, interspersed with lunches and knee-polishing appointments.  She returns to our nest like a magpie bearing the sparkly-spoils of London - a rather nice fish-pie from the fishmonger in Bute Street, a dressing gown I needed, some delicious cheese from a Marylebone Road cheesemonger, a spare catheter bag.  Life, one could argue, is relatively normal.

I cannot help but be struck by my good fortune.  Were it not for my random medical check-up back in April, I would be still wandering around, feeling perfectly fit and blissfully unaware that deep inside me a virulent cancer was exploding out of my nether regions.  For heaven's sake get a blood test, gents.  Every year.

To be continued ….

 

 

User
Posted 04 Oct 2018 at 07:40

W

That brings back a few memories. Great post.

Thanks Chris

User
Posted 04 Oct 2018 at 08:00

Many thanks Paul - looks like  we are pretty much in sync.  best wishes for a  speedy recovery!

User
Posted 04 Oct 2018 at 09:10
Great account :) Can relate.

The vivid picture you painted of the the octogenarian man with the very bitey ferret down his trousers and the hazard of inquisitive dogs made me laugh out loud......

My very best wishes for a speedy and full recovery. Selfishly I'm also looking forward to the next instalment.....

Nick

User
Posted 04 Oct 2018 at 14:03
Hi Wobbly,

Many thanks for your amusing commentary on your surgery. People have complemented me on mine, as we seem to have a similar “what the hell” attitude to this little difficulty, but yours is far funnier!

Have you had your post-operative histology report on ‘he who was removed’ by ‘he who cannot be named’? It sounds like you went private, but I had excellent treatment on the NHS, saving me around twenty-five grand.

Best of luck for the future.

Cheers, John

User
Posted 04 Oct 2018 at 16:50

Great post W.

Hope your recovery continues smoothly.

A lot of your post reminded me of my experience. 

Looking forward to your next post after catheter removal!

Ian

 

Ido4

User
Posted 06 Oct 2018 at 23:01

I have a very similar diagnosis and went for surgery last week. In the final event the arguments for going with surgery as a first choice won out. As you say there’s something appealing about getting the cancer physically removed. I am 60.

Like everyone I’m getting used to the side effects is a worry and has been a bit of an emotional rollercoaster.

I had my op on Tuesday, they took lymph nodes so I’ll know the biopsy results in about 10 more days. My CAT scan was also indicative of it being contained so keeping fingers crossed.

All the best for your chosen path, it sounds like you made the best decision. I am also South London based, I went with the NHS.

How did the nerve sparing go? I was also told possibly one side but once they got in and saw the state of the prostare it wasn’t possible to save any. They had prepared me for this but still a bit of a jolt.  

Edited by member 06 Oct 2018 at 23:18  | Reason: correction and updated

User
Posted 09 Oct 2018 at 16:10

RECOVERY - Phase Two (looking forward to nappies)

I must admit that Mr. Catheter was the element of my recovery I most dreaded, but he turned out not to be that bad, and the time went by pretty fast. There were even some advantages -  such as being able to take a piss (so to speak) in public.  All you need is a few inches of grass to give you sufficient coverage and whoosh - out it comes in about 6 seconds.  It looks like you are simply bending over to tie your shoe-laces.  In the end, it was really just inconvenient, but I never thought the day would come when i was actually looking forward to the freedom of wearing a diaper.

Saying goodbye to Mr. Catheter was an entirely different scenario - one of the most extreme, buttock-clenching, eye-popping, expletive-laden moments of my life, as it was pulled, gently but firmly out of my interior.  The nurse was experienced and really did her best to minimize the unpleasantness, but it was nevertheless … unpleasant.  I strongly recommend saving one of the military-grade pain killers they give you to take home from the hospital (I had Oxycodone), so you can pop one 30 minutes prior to the extraction.  I did.  In hindsight, I rather wish I had saved two.  I don’t wish to over-dramatise this, as it really only lasts 10 seconds, but … yes, actually, I am going to stick with the drama.  Dearly Beloved, watching all this palaver from the sidelines, just pointed out how this was a walk in the park compared to childbirth, and of course she was right.  Some people have reported that it is better to actually do it yourself, others say it was painless for them.  Either way, be prepared.

RE-BOOTING THE BLADDER 

I had been told that they would need to keep me under observation for a few hours to ensure I could pee and that my bladder was emptying.   After my adrenalin, breathing and heart rate had settled down to something approaching normal, I stood up, at which point my bladder immediately launched into a free-style peeing demo, just to make sure I was thoroughly and immediately aware of the change in programming.  This was all fairly startling, so I sat down again. 

It's important to understand what happened so far.  My urethra (which runs through the middle of the prostate) was cut off directly below and above the prostate (where it joins my bladder) and removed.  The urethra is then hoicked up to be re-connected to the bladder again.  A catheter is inserted to drain the bladder while the join heals.  In the process, varying amounts of nerves are damaged or destroyed and the muscles used to control one’s bladder become effectively ineffective as the whole arrangement is rebuilt and shifted 2 inches north.  In architectural terms, this is the equivalent of an extensive basement remodel.

As far as I can understand, two things happen at this point.  The nerves that sense what is going on in that general area pretty much don’t any more, and the muscles do the important squeezy-thing they have done, uninterrupted, for the last 59 years don’t do that either.  So it all has be retrained from scratch.  All of this varies from person to person in terms of severity and effects.

One other thing that no one tells you is that RRP also stands for Roto-Rooting the Plumbing.  I mentioned earlier that I did not really have any difficulty peeing, but of course after 59 years and the prostate generally getting gnarly, things had gradually slowed down over time, a bit like the calcification of plumbing in an old house.  So now, after surgery, when I do pee, the resulting stream is like a cross between a fairground donkey and a power-washer.  To say I had pressure restored, would be an understatement - I could probably strip the paint off a gate from four paces.   It must be noted that when combined with lack of any semblance of control, this is not an entirely desirable scenario.

Enter absorbent pads and Kiegel exercises, stage left.  

To be continued ….

 

User
Posted 09 Oct 2018 at 16:16

Thanks for your kind words John.

I am glad things went well for you.  I have not had my histology report yet, but my surgeon has  told me the  thing was very inflamed and had actually broken out of the capsule.  Despite this,  he who cannot be named said that  he thinks he got it all and  right now does not think I will need Radio.  I think it all depends on my PSA level in six weeks time.

Yes, I went private, only because I could as I have basic private insurance and did not have any wait.

Best  regards,

Richard

User
Posted 09 Oct 2018 at 16:59

Hi wobbly

My storey is similar. I went to GP 3 months ago, no symptoms just annual mot with a psa, today I sit in my lounge having gone through Robotic radical prostatectomy at the Marsden. My Gleeson was 7, psa 13.7 and 2TN0.

Today I got my histology report the and there is clear evidence they got everything and no spread to lymph nodes or adjoining tissu.An excellent result.

I had the debate of HT-RT v’s surgery. I elected for surgery because of my age, good state of health, better prognosis. I used this community to provide guidance. I was concerned about incontenance but I have had very little, only what they call pressure incontenance only if I sneeze or cough or stand up too quickly - so it’s not a problem and it will only get better. As of yesterday I don’t even need any pads. Last week I was using one a day. I had the suprapubic catheter so nothing thru the penis. I spent 6 weeks prior to surgery strengthening my core, loosing weight and doing kegel exercises. I am sure this was a help. Regarding ED - I am having rumblings in the nether regions so it looks like I may have erections in the future. I am surprise this is happening so early.

I rejected ht because of the longer term side effects - I know other men who had difficunties with depression and anxietY.

I had two difficult days post surgery but every day got better and better. After 2 weeks I was moving around quite easily. Paracetamol was the strongest painkiller used. I am now ending my 3rd week. And it’s so good. The people at the Marsden are fantastic and the flow of communication perfect. For now I consider myself cancer free with an excellent prognosis- whatever happens in another 5 years is another challenge but electing for surgery gives me loads of options. I am so lucky And all covered under NHS.

At the end of the day everyone’s storey is different. I know I have made the right decisions and I am in a great mental place.

 

cheers to all

User
Posted 09 Oct 2018 at 17:30
Hi again Wobbly Richard,

As you said, when they reconnect the pipework there is a shortfall of around 2” where the prostate once was, but they don’t seem to fit a spacer to make up the gap, like any decent plumber would do!

I think I am four months post-op, and am continent as I more or less have been from the start, apart from the occasional dribble absorbed by my underpants. The supra-pubic catheter seems vastly superior to the urethral one, but they say it’s more technically complex for the surgeon, and you end up with seven puncture wounds rather than five or six.

There is no sign of life down below of what’s left of my manhood, but with a lot of encouragement, I can orgasm. They say that may change in a year or so - I had nerve sparing on one side - and we’ll be out of the EU by then as well, so roll on 2020!

My PSA is undetectable, so for now I’m carrying on as ever. I didn’t have any symptoms last November when my raised PSA was discovered. Hope your PSAs come up negative just the same.

Best of luck to all.

Cheers, John.

User
Posted 09 Oct 2018 at 17:32

Hi Wobbly

Your rendition is very helpful and very amusing. I also have a Gleason 9 and am going through the same machinations as you did re op v HT/Radio.

Your account of each stage is very helpful to my decision- making

User
Posted 09 Oct 2018 at 17:39
The shortfall is generally of the same length as the prostate so men with a small gland may hardly notice the difference while men with a big prostate can lose a couple of inches. Some surgeons say it is a myth and length is not affected at all because the bladder just settles lower in the pelvis.... but lots of men on here will confirm otherwise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2018 at 19:02

Hi Mike,

I am so glad my experience can in some small way benefit you as you weave your way through this complex subject.  We both share a high Gleason and I know how hard the choice is to make.  Please let me know if  I can help you in any way at all.

Best,

Richard

 

User
Posted 09 Oct 2018 at 19:39
I’m now over 3 1/2 yrs post op. It seemed at the beginning using the pump that I had lost no length at all and continued that way for a year at least. Despite regular use I seemed to lose over an inch to two inches more or less over night and it has stayed that way ever since. My once proud 7 is now a fat , bent 5 at most and is still disheartening. It may be that a whole year of missing constant daily and nightly erections leads to tissue death / atrophy and hence the shortfall.

If life gives you lemons , then make lemonade

User
Posted 09 Oct 2018 at 19:43
Consultants seem stubborn in their refusal to admit that RP causes a shortening of the flaccid penis.

Luckily, the urethra is elastic 👹

User
Posted 09 Oct 2018 at 22:31

Thanks Richard - appreciate your offer of help.

User
Posted 09 Dec 2018 at 21:10

RECOVERY - PHASE THREE   "The Art of Incontinence and the Controlled Fart)  

Hi Everyone!  Well, it's been a while, and I feel I owe you another post as a follow up to my previous missives.  My intention was always to give a full and honest account of the procedure and recovery, so here is the important bit that relates to getting back to normal life.  All this is just how it worked for me and everyone is different, but I hope this helps.  I was somewhat delayed in posting this because of a second surgery.  In the process of filling me full of Chernobyl water and scanning me up and down the wazoo, prior to my surgery, they discovered a small shadow on one lung.  To cut a long story short, I elected to have this removed, even though they weren't sure it was anything.  Lung surgery, it turns out, is a bugger.  They went in, biopsied me while I was on the table and discovered it was cancerous.  So when I came around I discovered I had had an upper right lobectomy.  Two  major surgeries in the space of three weeks is not to be recommended.

The pads seem daunting, but you really get used to them fast.  They feel a little odd at first, and it takes a few days to work out how best to insert them in your underwear so they stick to the underwear and not your balls.  Anything sticking to your balls is generally bad.  You spend a bit of time playing a new version of pocket billiards as you try and get it all settled in the right place, and occasionally attract a few disapproving looks from elderly ladies on the 22 bus when a vigorous rearrangement is suddenly required.

To start with, I found everything causes a little squirt.  Getting up, coughing, getting in and out of cars, eating cornflakes and a long list of other things, but especially farting.   I  found an app on the iPhone called "myPFF", which is designed for ladies who have a leakage issue and need to do the squeezy exercises all the time.  I was very concerned that I would never recover control and that the squeezy thing was simply b*******.  But actually, it works surprisingly well and faster than I thought. The MyPFF app sets a reminder that pings you to do the squeeze and it's really useful, otherwise, you forget.  

I had my surgery on September 22nd and my catheter out a week later.  Now, as I write on December 8th, I have not been using pads at all for about 2 weeks, so  I used them for about 6 weeks in total.  I started taking them out during the day, at home,  and then only used them at night.  I have one accident when I wet the bed, but that was it - no other diplomatic incidents at all.  Now,  really the only time I let out a little tiny squirt is when I fart.  It has become a challenge to do the complex maneuvering of muscles to gently roll out the fart while controlling the bladder muscle. Its sort of like pulling the tablecloth out from off a table set for six, but it is possible.  But even these little leaks are so tiny that they cannot be outwardly detected, even without pads.  So, for those of  you reading this prior to surgery - don't panic, its not nearly as bad as it sounds.

There was no sparing of my nerves, so erections are a thing of the past.  I do find that with a little stimulation I can manage a sort of ghost orgasm.  It's very faint., but its there and it does provide some slight feeling of relief. 

So,  I am fit and well again, if not entirely my old self.  I  am delighted  that I chose the RRP and not radiotherapy, and I would be happy to offer a pithy opinion to anyone in the same boat as I was trying to decide which way to go.  I could not have been happier with my surgeon, [name removed]. The man is a genius.  

Good luck!

 

Edited by moderator 09 Dec 2018 at 21:49  | Reason: Removing surgeons name

User
Posted 09 Dec 2018 at 22:01
Glad to read you are recovering well. Two major surgeries back to back is extremely tough, well done for facing it and getting it sorted. Are you on any further treatment for the lung cancer like chemotherapy?

Best wishes,

Ian

Ido4

User
Posted 09 Dec 2018 at 22:09

No, not on anything.  Undetectable PSA and declared free of cancer - the lung was caught really early and had not progressed anywhere.

Best,

 

Richard

 

User
Posted 09 Dec 2018 at 23:07

That’s great news.

Ian

Ido4

User
Posted 11 Dec 2018 at 12:05

Thank you for your latest instalment Richard. I have opted for the RRP rather than hormone/radiotherapy after much deliberation. Op is planned for 16th Jan.

Regards

Mike

User
Posted 11 Dec 2018 at 15:05

HI Mike, 

It feels much better when you have the decision made, doesn't it?!  I hope my notes were helpful and I wish you  the best of luck, an easy surgery and a quick recovery.

 

Best,

 

Richard

 

 

User
Posted 11 Dec 2018 at 16:22
Cross fingers it works but this way you get two bites at the cherry

P

 
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