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Age 39 and diagnosed this week

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User
Posted 28 May 2022 at 10:59

Hi 

I’m 39 and just diagnosed recently. And it’s safe to say my head is fried. why me, what to tell my son (he is 10) etc etc. I have been told that prostatectomy is my only option and only the nerves one one side of the prostate can be spared.  I am having robotic surgery I’m wondering if anyone has been in a similar situation and can tell me what life is like afterwards. I’m finding it hard to find info on only one bunch of nerves being spared. 
I just feel too young for all this. Didn’t think it would ever be an issue this early

User
Posted 28 May 2022 at 21:06

Hello Martin, yes the Zoom is accessible outside the UK.

There won't be a Zoom in June. We were aiming to do our first face-to-face meeting since COVID in June, but we're struggling to find any date when enough of our consultants are available, so I'm not sure there will be a meeting at all in June.
EDIT: couldn't find a date when consultants and local venue all available, so we will be on Zoom in June.

The intention is to run Zooms one month, alternating with face-to-face meetings the next month at Chorleywood.

Edited by member 01 Jun 2022 at 02:04  | Reason: Not specified

User
Posted 16 Jul 2022 at 20:49

Just said I would post a quick update. The catheter is gone nearly thankfully. The freedom without it is amazing!! 
There is still the incontinence to deal with but it hasn’t been as bad as I thought. Using 3 or 4 pads a day but only small leaks or dribbles mostly due to stress I think. Leaving it too long to go and bending but I think it’s getting better. Using a pull up at night but I have woke up dry every morning. I do wake 2 or 3 times a night for the toilet but I’m just glad there is a feeling there to wake me. I’m sure this will get better in time. 
The old mental state is pretty good this week but it has its ups and downs. I have booked in with a counsellor tomorrow to try and sort that out. 
I have a soft lump over one of my testicles which is giving a bit of pain now and again which I am having checked out on Tuesday. Curious did anyone every come across this? 
other than that pretty good all round. 
I wanted to put the update up Incase anyone was reading this just to let you know it’s not all bad and there may be light at the end of the tunnel after all. Just keep on plugging away one day at a time. 

User
Posted 29 May 2022 at 15:01

Well said Ulsterman there is always hope at the end of the tunnel 👍

User
Posted 29 Sep 2022 at 21:55

Hey Dave, Thanks for the welcome.

You are correct mate. Although my consultants constantly told me there is nothing to worry about the word cancer resonates in your head. If you are going to get it this is the one to have. I think every man will arrive at this at some point in their life and awareness is so important. Pre knowing I had anything I never gave it a second thought but every male I know I am now badgering them to make sure they understand this silent time bomb. Don't wait for it to arrive, go looking for it.

I do seem to be texbook in my recovery and hitting benchmarks ahead of expected times. Some people can't believe I was back at work 3 weeks post op although I am working from home mostly. I work in IT so nothing to physical. I do feel exausted by the end of the day but am building up slowley.

I think my biggest move forwards was getting out of the house. After I physically felt better at home post op I did have some mental health issues abd would not leave the house. I think mainly due to having the catheter and being very self aware. I had so many fears and really bad anxiety. I was actually frightened all the time. Of what I could not tell you. Something snapped in me and snapped out of it and started going for short walks. I think went in to town with my wife (she really dragged me there) and had a nice lunch. I then realised there is a world out there and I have just been through this whole operation to enable me to live in it for a long time. Couldn't tie me down after that revelation.

I do consider my self very luck now with regards to side effects. Incontenence was a big worry for me but over the last two weeks I have come along in leaps and bounds and every week is a noted improvement. Although my wife has nick named me Tinkles. People do join these type of forums looking for answers to problems or are crapping them selves after a new diagnosis. I certainly hope I can help reduce somebody's worries or make someone feel a bit better or more positive by sharing my story. I have a strong sense of giving back somehow.

All the best Dave and hope you are making positive progress.

User
Posted 28 May 2022 at 14:18
It is hard to be diagnosed young and also to accept that prostate cancer can be more persistent / aggressive in younger men which is why you are being advised to opt for radical treatment.

In terms of full v partial nerve sparing, it doesn't seem to make a huge difference to the outcome for erectile dysfunction - a very small number of men have full nerve-sparing and never have an erection again - plenty of men have only partial nerve sparing but make a full (or reasonable) recovery.

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

User
Posted 28 May 2022 at 18:36

Hello Martin, sorry to hear of your situation.

Although some men never get natural erections back even if full nerve sparing, for the moment, let's assume you do. In that case, natural erections might not be quite as firm as they were, although often still good enough for vaginal intercourse. However, this is where PDE5 inhibitor drugs (Viagra, Cialis, etc) some in very handy. These work in effect by amplifying the erection nerve signals arriving at the penis, and should hopefully be able to counteract any deficiency of losing one side. Also, using a cock ring may be effective, as counterintuitively, they make erections firmer.

There are some things you can do to help improve outcomes in this area. Ask for Tadalafil (unbranded Cialis) to take after the operation as there's a small amount of evidence that it helps with the nerve healing after the op (even if it won't yet give you erections). This could either be 2 x 20mg/week, or 5mg daily low dose. If you can't yet get erections at 8 weeks after the op (most men can't yet at that stage), ask for a pump (technical name Vacuum Erection Device) to do penile rehabilitation, so you can regularly generate erections at least until natural ones return. This will help keep the penis healthy and stretchable, as it needs regular erections in order to keep working. Both the pump and the Tadalafil are a bit of a postcode lottery.

I didn't have this treatment personally, but maybe someone who did can comment too.

Also, start doing Pelvic Floor Exercises now, as that will help your continence afterwards.

There's nothing in your profile about your staging/gleason/PSA. I might have commented further if I knew what these are.

User
Posted 28 May 2022 at 20:02

Martin, I was "supposedly" non nerve sparring but still had a partial recovery. I say supposedly because as pointed out to me without any nerves nothing should work. You are presumably aware that following surgery you will not be able to father any more children, if that is an something you want to do then you would need to store sperm. 

We had fun finding solutions the lack of natural erections, never give up, try anything that is on offer. Needing to use tablets pumps and injections will have an effect on spontaneous sex, you just need to make it part of making love. You will have dry orgasms after surgery, I found my orgasms were out of this world after prostate removal.

Andy62  organisers a monthly zoom meeting with consultants and a physio, it normally attracts around 30 patients and newbies get the chance to ask questions first. It is a friendly bunch of people who attend. The physio gave some very good advice at the last meeting, when practicing the pelvic floor exercises , practice tensing the muscles as you stand and also when lifting. The tensing when standing is probably the most important one to prevent leakage. I was 99 percent dry 4 days after catheter removal, other have done better.

Any questions, just ask.

Thanks Chris 

 

User
Posted 29 May 2022 at 13:54

Martin, I was 46 when diagnosed, so a fairly young man.  Not as young as you, of course.

I was T3a and Gleason 7 and was told surgery was the way to go.   The team fully explained that it was highly likely I'd need further treatment at some stage.

Post surgery, I was upgraded to T3b and Gleason 9.

Non nerve sparing.

A year after surgery I had salvage radiotherapy and hormone therapy.

My PSA has been <0.006 for 3 years now.  I have been discharged from oncology 

I use invicorp injections for erections.  Nothing else worked.  I'm having a penile implant on 9th June 

I don't ejaculate but my orgasms are excellent.

My daughter graduates in July and my son on July 2024.  I'll be at both graduations.

I believe I'll see my grandchildren.

There really is hope.  Your treatment has every chance of success.

 

My thoughts:

Have as much sex as you can before the surgery.  You're going to have a bit of a break

Sperm banking - if you want anymore kids

Don't lose hope.  As unfair as things seem, you have every reason to hope 

 

User
Posted 29 May 2022 at 15:48

Yes great post ulsterman 👍

So sorry you find yourself here Martin and at such a young age. Definitely lots to be hopeful for as said above.

Just out of interest, did you find the cancer because you had symptoms? I can’t help but think that a lot of men possibly have PCa at your age but as it’s so slow growing (and why would they get checked) it’s not found until a later age. Your PSA is low and Gleason score too so every reason to feel very optimistic about the future.

Best of luck with everything 

 

User
Posted 29 May 2022 at 22:03

First of all Thank you to everyone who replied, I would never normally go on an online forum but I have to say that it has really helped. hearing about other peoples experiences and realising that there can be a sense of normality after all this is over and done with has really helped. Last night was the first night I slept since I found out and feeling a lot more positive today. 

I know there were a few questions that came up in the last few posts and I'll try and answer them now. 

Sperm banking is underway and should be taken care of in the next few weeks.

Just in relation to how it was discovered, it was a routine blood test but not 100% sure why PSA was checked, but in hindsight it was a stroke of luck, it came back a little high at 3, so there were repeated tests carried out and the results remained the same, at that stage I was sent for an MRI and a biopsy based on the result of that. I would never have considered myself to have had symptoms of Prostate cancer as it was something that never crossed my mind, probably due to my age. But the day of my biopsy when the specialist nurse started going through a checklist of symptoms I began to realise I had quiet a few, peeing at night time (3 to 4 times a night which I assumed was probably a result of getting older) stop start during urination, not completely emptying my bladder and urgency to some degree. when its written in black and white in front of me it seems so obvious now!!

I am meeting with a specialist nurse next week for some blood tests prior to spermbanking and on the back of this thread I have lots of questions I can ask about post surgery treatments and rehab, I did meet with her last week but it was 5 minutes after I got my results so I wasn't really thinking clearly and probably wouldn't have remembered the answers anyway

Thanks again to everyone for all the encouraging stories and opening up about your own personal stories. I can see a lot clearer now. As I get through this thing! I hope that I to will be able to offer reassurance and a Kind word to someone in a similar position. 

Ye are a great bunch

 

User
Posted 18 Jun 2022 at 19:33

Thank you Michael. I wish you all the best too. We are probably going through the same range of emotions at the minute and mind blowing is a very apt description. All the best. 

User
Posted 18 Jun 2022 at 20:58
Sorry , forgot to say all the best , and bare in mind 1 in 8 will develop PC , I personally know 6 ! And as your oncologist said in 10 yrs time it would have been a different ball game . I would say thou if you have any brothers they should get checked out .
User
Posted 07 Jul 2022 at 06:53

Good stuff - onwards and upwards!!

User
Posted 07 Jul 2022 at 08:23
I am pretty certain that you will have been warned but only lift light tings and progressively until you fully heal over the three or so months. Things may not look much on the outside but you have had major surgery internally which takes tie to heal.

Pleased for you that that OP seems to have gone well. You will be much more comfortable with the catheter out. Unfortunately you will have to have PSA tests but if results are good timings between these should be extended.

Barry
User
Posted 07 Jul 2022 at 08:42
Glad surgery went well and you’re on the road to recovery. Take it easy once catheter is out and don’t overdo it. Don’t underestimate the surgery and what they have done in there! My hubby felt so much better once catheter was out. Keep on with the prune juice to avoid any constipation. Plenty of naps and some fresh air, but only gentle walks. Your body will let you know. Wishing you the very best. X
User
Posted 07 Jul 2022 at 17:59
Hey Martin, Welcome to the other side of this recent nonsense we've both been through. Its in our rear view mirror now mate. Fingers crossed lad.

Jamie

User
Posted 07 Jul 2022 at 19:01

Glad the op went well Martin. And hope all has gone well at TWOC aswell and you are now catheter free. I made sure my husband didn’t do too much for quite a while after the op, definitely no lifting, even a kettle for a couple of months (think he got used to it 😂) he is a lot older than you but we pretty much stuck to everything they said and are so pleased with how well he recovered from the surgery. Wishing you all the best for full recovery and looking forward to the future now 👍

User
Posted 07 Jul 2022 at 20:55

Great to hear everything went well Martin. I sympathise with the shoulder pain, which I found worse than any surgical pain. The crazy thing is it's a referred pain caused by trapped gas in the abdominal cavity from the surgery irritating the diaphragm area. It hangs around until the gas gradually dissipates. Mine lasted for about four days. Hopefully it's now onwards and upwards from here. Chris

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User
Posted 28 May 2022 at 14:18
It is hard to be diagnosed young and also to accept that prostate cancer can be more persistent / aggressive in younger men which is why you are being advised to opt for radical treatment.

In terms of full v partial nerve sparing, it doesn't seem to make a huge difference to the outcome for erectile dysfunction - a very small number of men have full nerve-sparing and never have an erection again - plenty of men have only partial nerve sparing but make a full (or reasonable) recovery.

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

User
Posted 28 May 2022 at 18:36

Hello Martin, sorry to hear of your situation.

Although some men never get natural erections back even if full nerve sparing, for the moment, let's assume you do. In that case, natural erections might not be quite as firm as they were, although often still good enough for vaginal intercourse. However, this is where PDE5 inhibitor drugs (Viagra, Cialis, etc) some in very handy. These work in effect by amplifying the erection nerve signals arriving at the penis, and should hopefully be able to counteract any deficiency of losing one side. Also, using a cock ring may be effective, as counterintuitively, they make erections firmer.

There are some things you can do to help improve outcomes in this area. Ask for Tadalafil (unbranded Cialis) to take after the operation as there's a small amount of evidence that it helps with the nerve healing after the op (even if it won't yet give you erections). This could either be 2 x 20mg/week, or 5mg daily low dose. If you can't yet get erections at 8 weeks after the op (most men can't yet at that stage), ask for a pump (technical name Vacuum Erection Device) to do penile rehabilitation, so you can regularly generate erections at least until natural ones return. This will help keep the penis healthy and stretchable, as it needs regular erections in order to keep working. Both the pump and the Tadalafil are a bit of a postcode lottery.

I didn't have this treatment personally, but maybe someone who did can comment too.

Also, start doing Pelvic Floor Exercises now, as that will help your continence afterwards.

There's nothing in your profile about your staging/gleason/PSA. I might have commented further if I knew what these are.

User
Posted 28 May 2022 at 19:05

Thanks for taking the time to reply Andy. I have to say everyone here is very good

thats good to know about the rehabilitation I will ask my urologist and go about this. 

my Gleason is 3+3 and my PSA was 3 also. The cancer is in the whole of one side of the prostate but too close to the nerves to spare. They have said there is a large volume of it in the prostate as all 8 samples taken from that side of the prostate came back positive. But thankfully they say it is all within the prostate. Close to the edge but hasn’t breached. I am being told that the op is the only option as they want to keep the radiotherapy as a back up Incase it returns in later life due to my age. 

I have to wait approx 6 weeks for the op as they want to make sure the prostate is fully healed from the biopsy. So that’s going to be another fun wait!!!! 

User
Posted 28 May 2022 at 20:02

Martin, I was "supposedly" non nerve sparring but still had a partial recovery. I say supposedly because as pointed out to me without any nerves nothing should work. You are presumably aware that following surgery you will not be able to father any more children, if that is an something you want to do then you would need to store sperm. 

We had fun finding solutions the lack of natural erections, never give up, try anything that is on offer. Needing to use tablets pumps and injections will have an effect on spontaneous sex, you just need to make it part of making love. You will have dry orgasms after surgery, I found my orgasms were out of this world after prostate removal.

Andy62  organisers a monthly zoom meeting with consultants and a physio, it normally attracts around 30 patients and newbies get the chance to ask questions first. It is a friendly bunch of people who attend. The physio gave some very good advice at the last meeting, when practicing the pelvic floor exercises , practice tensing the muscles as you stand and also when lifting. The tensing when standing is probably the most important one to prevent leakage. I was 99 percent dry 4 days after catheter removal, other have done better.

Any questions, just ask.

Thanks Chris 

 

User
Posted 28 May 2022 at 20:22

Thanks chris. 

that’s some very encouraging reading. A lot better than what has been going on in my head the last few days. Is the zoom available to people outside the UK? 

User
Posted 28 May 2022 at 21:06

Hello Martin, yes the Zoom is accessible outside the UK.

There won't be a Zoom in June. We were aiming to do our first face-to-face meeting since COVID in June, but we're struggling to find any date when enough of our consultants are available, so I'm not sure there will be a meeting at all in June.
EDIT: couldn't find a date when consultants and local venue all available, so we will be on Zoom in June.

The intention is to run Zooms one month, alternating with face-to-face meetings the next month at Chorleywood.

Edited by member 01 Jun 2022 at 02:04  | Reason: Not specified

User
Posted 29 May 2022 at 13:54

Martin, I was 46 when diagnosed, so a fairly young man.  Not as young as you, of course.

I was T3a and Gleason 7 and was told surgery was the way to go.   The team fully explained that it was highly likely I'd need further treatment at some stage.

Post surgery, I was upgraded to T3b and Gleason 9.

Non nerve sparing.

A year after surgery I had salvage radiotherapy and hormone therapy.

My PSA has been <0.006 for 3 years now.  I have been discharged from oncology 

I use invicorp injections for erections.  Nothing else worked.  I'm having a penile implant on 9th June 

I don't ejaculate but my orgasms are excellent.

My daughter graduates in July and my son on July 2024.  I'll be at both graduations.

I believe I'll see my grandchildren.

There really is hope.  Your treatment has every chance of success.

 

My thoughts:

Have as much sex as you can before the surgery.  You're going to have a bit of a break

Sperm banking - if you want anymore kids

Don't lose hope.  As unfair as things seem, you have every reason to hope 

 

User
Posted 29 May 2022 at 15:01

Well said Ulsterman there is always hope at the end of the tunnel 👍

User
Posted 29 May 2022 at 15:48

Yes great post ulsterman 👍

So sorry you find yourself here Martin and at such a young age. Definitely lots to be hopeful for as said above.

Just out of interest, did you find the cancer because you had symptoms? I can’t help but think that a lot of men possibly have PCa at your age but as it’s so slow growing (and why would they get checked) it’s not found until a later age. Your PSA is low and Gleason score too so every reason to feel very optimistic about the future.

Best of luck with everything 

 

User
Posted 29 May 2022 at 22:03

First of all Thank you to everyone who replied, I would never normally go on an online forum but I have to say that it has really helped. hearing about other peoples experiences and realising that there can be a sense of normality after all this is over and done with has really helped. Last night was the first night I slept since I found out and feeling a lot more positive today. 

I know there were a few questions that came up in the last few posts and I'll try and answer them now. 

Sperm banking is underway and should be taken care of in the next few weeks.

Just in relation to how it was discovered, it was a routine blood test but not 100% sure why PSA was checked, but in hindsight it was a stroke of luck, it came back a little high at 3, so there were repeated tests carried out and the results remained the same, at that stage I was sent for an MRI and a biopsy based on the result of that. I would never have considered myself to have had symptoms of Prostate cancer as it was something that never crossed my mind, probably due to my age. But the day of my biopsy when the specialist nurse started going through a checklist of symptoms I began to realise I had quiet a few, peeing at night time (3 to 4 times a night which I assumed was probably a result of getting older) stop start during urination, not completely emptying my bladder and urgency to some degree. when its written in black and white in front of me it seems so obvious now!!

I am meeting with a specialist nurse next week for some blood tests prior to spermbanking and on the back of this thread I have lots of questions I can ask about post surgery treatments and rehab, I did meet with her last week but it was 5 minutes after I got my results so I wasn't really thinking clearly and probably wouldn't have remembered the answers anyway

Thanks again to everyone for all the encouraging stories and opening up about your own personal stories. I can see a lot clearer now. As I get through this thing! I hope that I to will be able to offer reassurance and a Kind word to someone in a similar position. 

Ye are a great bunch

 

User
Posted 30 May 2022 at 04:02

The symptoms you list are collectively known as LUTS (Lower Urinary Tract Symptoms). They are not usually caused by prostate cancer, but by an enlarged prostate, which you might have as well. Enlarged prostate (BPH - benign prostatic hyperplasia) is very common and isn't related to prostate cancer, but you can have both conditions. Often, it's LUTS which get men to the doctor, and in some cases prostate cancer is an incidental finding when they get checked out, but not the cause of the LUTS. However, this leads to the common suggestion that these are symptoms of prostate cancer, whereas most men diagnosed with prostate cancer have no symptoms of the cancer itself.

This doesn't change anything in your case, but it's important to understand men can have prostate cancer even if they have no symptoms.

User
Posted 31 May 2022 at 22:02

So sorry to read about your situation so young Martin.  Like you i have just been diagnosed in the last week to 10 days.  I felt young at 53 for this so at 39 it must be mind blowing for you.  Like you again I have found the forums and site here very helpful.  I truly hope things work out well for you.  I hope you can stay positive in the face of this all.  Take care and good luck. 

 

User
Posted 01 Jun 2022 at 02:02

Regarding FOPS Zoom meeting mentioned above, change of plan and we will be on Zoom in June. See my profile for details.

User
Posted 18 Jun 2022 at 19:33

Thank you Michael. I wish you all the best too. We are probably going through the same range of emotions at the minute and mind blowing is a very apt description. All the best. 

User
Posted 18 Jun 2022 at 19:51

Hi. I haven’t been here for a while. I went for a few days away with the family to try and get my head straight. 
my surgery has been brought forward to next week and now I feel like I’m looking down the barrel of a gun. 
does anyone have any tips on how to deal with the emotion of it all especially running up to the surgery. I’m so angry and upset and scared to be honest. And I don’t want it to take over my last few days of normality but it’s hard to shove it to the back of your mind. I probably have read too much online and have stopped but I’m the kind of man who likes to know the facts and be in a position to prepare. Incontinence, impotence and penile shrinkage (that was a new one on me)

 I also feel robbed to be honest. We were just about to sign on the bottom line for a new house but that’s been blown out of the water as I can’t get life assurance which is needed for the mortgage. So that’s gone along with so much basic stuff that is taken for granted at this age. Sometimes I wish I never had that blood test. Ignorance was bliss!!! 

I know one view is that im lucky it was caught in time and my urologist has said if it was left for 10 years it would be a whole different outcome  but I just feel anything but lucky at the minute

sorry I’m rambling but thought it might help to put it out there. Just venting 

User
Posted 18 Jun 2022 at 20:55
For all info , stay with your ‘cancer’ team at the hospital also Macmillan a great help , as for ‘finding’ info online , please just use this forum , NHS site, don’t go googling anything else it will give you too much info overload .
User
Posted 18 Jun 2022 at 20:58
Sorry , forgot to say all the best , and bare in mind 1 in 8 will develop PC , I personally know 6 ! And as your oncologist said in 10 yrs time it would have been a different ball game . I would say thou if you have any brothers they should get checked out .
User
Posted 19 Jun 2022 at 01:58

I absolutely get it Martin - I was 44 when my husband was diagnosed and our plans for a dream home in France were immediately scuppered by the life insurance issue (although some 13 years later, we do have our barn in the Dordogne). Don't give up hope - there are mortgage companies who do not require life insurance (or at least, there are in England so presumably also possible in Ireland?)

Feeling angry and robbed is a perfectly reasonable response to your situation and it will be magnified at the moment by pre-op nerves. There haven't been many times over the last 13 years that John or I have felt that he was lucky to be diagnosed - although looking back I guess the fact that he is still next to me is bloody marvellous. Life changes forever but you could say that for any diagnosis of cancer or other life-limiting diseases and you will find your new normal.

Edited by member 19 Jun 2022 at 02:03  | Reason: Not specified

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

User
Posted 19 Jun 2022 at 09:27

Wishing you well for your surgery.  I take it you are having robotic surgery?

User
Posted 07 Jul 2022 at 03:46
Just said I would post a quick update.

I had my op (da Vinci) 10 days ago. 27/06/22 and home from hospital on the 29/06/22

All going good so far. Had a little pain afterwards but all very manageable. The surgeon was happy with how the operation went.

To be honest the worst pain I had was shoulder pain which is a side affect from surgery which lasted 4 to 5 days, a heat pack worked best for me for that.

I’m going in to get my catheter removed in the morning and honestly cannot wait to be rid of it!! No more bladder spasms, bag changes, getting tangled at night and that uncomfortable tug when you get it caught on something!

Thanks to everyone for all the messages of support and well wishes.

User
Posted 07 Jul 2022 at 06:53

Good stuff - onwards and upwards!!

User
Posted 07 Jul 2022 at 08:23
I am pretty certain that you will have been warned but only lift light tings and progressively until you fully heal over the three or so months. Things may not look much on the outside but you have had major surgery internally which takes tie to heal.

Pleased for you that that OP seems to have gone well. You will be much more comfortable with the catheter out. Unfortunately you will have to have PSA tests but if results are good timings between these should be extended.

Barry
User
Posted 07 Jul 2022 at 08:42
Glad surgery went well and you’re on the road to recovery. Take it easy once catheter is out and don’t overdo it. Don’t underestimate the surgery and what they have done in there! My hubby felt so much better once catheter was out. Keep on with the prune juice to avoid any constipation. Plenty of naps and some fresh air, but only gentle walks. Your body will let you know. Wishing you the very best. X
User
Posted 07 Jul 2022 at 17:59
Hey Martin, Welcome to the other side of this recent nonsense we've both been through. Its in our rear view mirror now mate. Fingers crossed lad.

Jamie

User
Posted 07 Jul 2022 at 19:01

Glad the op went well Martin. And hope all has gone well at TWOC aswell and you are now catheter free. I made sure my husband didn’t do too much for quite a while after the op, definitely no lifting, even a kettle for a couple of months (think he got used to it 😂) he is a lot older than you but we pretty much stuck to everything they said and are so pleased with how well he recovered from the surgery. Wishing you all the best for full recovery and looking forward to the future now 👍

User
Posted 07 Jul 2022 at 20:55

Great to hear everything went well Martin. I sympathise with the shoulder pain, which I found worse than any surgical pain. The crazy thing is it's a referred pain caused by trapped gas in the abdominal cavity from the surgery irritating the diaphragm area. It hangs around until the gas gradually dissipates. Mine lasted for about four days. Hopefully it's now onwards and upwards from here. Chris

User
Posted 16 Jul 2022 at 20:49

Just said I would post a quick update. The catheter is gone nearly thankfully. The freedom without it is amazing!! 
There is still the incontinence to deal with but it hasn’t been as bad as I thought. Using 3 or 4 pads a day but only small leaks or dribbles mostly due to stress I think. Leaving it too long to go and bending but I think it’s getting better. Using a pull up at night but I have woke up dry every morning. I do wake 2 or 3 times a night for the toilet but I’m just glad there is a feeling there to wake me. I’m sure this will get better in time. 
The old mental state is pretty good this week but it has its ups and downs. I have booked in with a counsellor tomorrow to try and sort that out. 
I have a soft lump over one of my testicles which is giving a bit of pain now and again which I am having checked out on Tuesday. Curious did anyone every come across this? 
other than that pretty good all round. 
I wanted to put the update up Incase anyone was reading this just to let you know it’s not all bad and there may be light at the end of the tunnel after all. Just keep on plugging away one day at a time. 

User
Posted 26 Sep 2022 at 11:46

I have just been reading your post it sounds similar to me iam 52 and nearly 8 weeks past operation. Just wondering how things are going for you as you are a few months further on than me. I also have hopefully had some nerves spared ect on one side. I also have one son of 14 at home and I know he thinks it's all sorted and everything is back to normal apart from still being away from work. Cheers greg

User
Posted 26 Sep 2022 at 13:09

Hi Greg

Glad you have the op over and hope you are doing well. 
I’m doing well. I have full bladder control back. I do go to the toilet a bit more often than before but I don’t have any leaks at this stage at all. I think the pelvic floor excercises are to thank for that. Went to a physio appointment last week and they discharged me as I had control back but advised me to continue doing some of the excercises to maintain the muscles. 
I still haven’t gone back to work yet. I’m a mix of office and site work and like you mentioned in some of your posts toilets aren’t always available. To be honest I probably could go back but was hit with a bout of depression so that slowed things a bit. I’m getting over that now and planning on returning in a couple of weeks. 
The sex side of the house isn’t right yet but hoping to start rehab therapy on that soon to get things going again. 
Any questions fee free to ask away. I know it can be hard at the stage your at because from the outside you look like your over it but there’s still a lot going on. 

martin

User
Posted 26 Sep 2022 at 18:52

Brilliant update Martin and glad to hear youre pulling yourself forward as best and quickly as you can. Journey much like mine, Re the mind struggle bit? Listen lad, You have well and truly nailed the cancer diagnosis malarkey, which gives you rhino skin to pretty much everything else. Stay strong comrade, oh and throw in a comment from the one and only Chippers on this thread and it has me all over it!!

Wishing you both well lads.

Jamie.

User
Posted 26 Sep 2022 at 19:57

This is great to hear Martin. Literally had the catheter taken out today - what a relief - just starting to work out how to deal with incontinence. Mentally just trying to keep the lid firmly on the 'what ifs'. 

User
Posted 28 Sep 2022 at 08:03

Hi Martin thanks for getting back to me. Glad you are thinking about going back to work as I found going to work before OP kept me normal and i thought about it all alot less.

I was dry at night as soon as pipe was removed and have been since. I am doing my exercises every day and my leakage is minimal using the lightest Tena man and changing pads twice a day. I try to squeeze when I get up but then as I walk away I leak a small amount but I think it's getting better, just worried about more manual lifting on return to work in Nov but only time will tell. 

I was interested in whete you are going in the erection department now as this is playing on my mind. I am behind you on timeliness I don't see my consultant until Oct 18th to hopefully get the all clear. I obviously know about all the tablets and other things they can give you pump ect but none of this has been properly discussed with me yet. Cheers Greg

User
Posted 28 Sep 2022 at 08:50

Greg you describe exactly the same incontinence pattern that I currently have. Dry at night, but loose a bit of urine after a few steps after getting up. Sort of reassuring that this seems to be normal. The uro-oncology nurses said I might leak when laughing, coughing etc but the opposite is true of me. Still got ED no signs of anything happening yet but I can dry orgasm which is something.

All the best for the recovery

Jim

User
Posted 28 Sep 2022 at 22:54

Oh Martin! In your 30's for this. I was 54 when I was diagnosed this July. 4 out of 18 biopsy samples were positive so had a very low rating. I have had the Robot assisted job done 4 weeks ago and am now 2 weeks post catheter removed. I totally understand the mental health issues you have expreienced as pre op my head was a train wreck. Even post op I was all over the place. Dealing with the catheter and adding the extra bag at a night time really got me down. It also felt like I had a garden hose going up there at times with a bit of nob ache which I still have very slightly. Apparently I had a larger sized catheter and not being due to having a big willy. Probably on the smaller size the poor little battered thing. 

Post catheter removal was mentally challenging. A one our journey home I p****d my self 7 times on the way home. I think this was due to being fed about 3 ltrs of water and 5 cups of tea to check all is working at the appointment. Get home and cleaned up and it all settled down that evening. I wore pullups at night for 2 nights before I decided I did not need them. Thank goodness they were aweful. Managing to get a grip on it all now. Have only needed one pad a day and have used a thin one on a night just in case. Don;t think I need one at all on a night time but more of a confidence thing. Leakage is getting less and less now. Was getting random squirts up until a few days ago and just getting some dribbles. Please with the progress. Haven't given it a test drive in the bedroom yet. I did wake up with a semi when I had the catheter in. That makes your eyes buldge so I am sure that will all come back. All my nerves have been saved. Was back at work 3 weeks post op so recovering well.

Keep your head together and be thankfull it was found early. One day at a time. Do understand the mental side of things but getting my head together now and really feel greatfull for the early discovery.

All the best

User
Posted 29 Sep 2022 at 08:28

Hi YorkiePaul, welcome to the forum. Good to hear the recovery is going very well. The nature of a forum like this is most posters have a problem, so it is good to get posts like yours where things are going well, it gives a more balanced view on treatment.

It also shows that even when things are going as well as expected "prostate cancer is the best cancer to get" falls a long way short of "no cancer is the best to get".

Keep us updated on your progress.

Dave

User
Posted 29 Sep 2022 at 21:55

Hey Dave, Thanks for the welcome.

You are correct mate. Although my consultants constantly told me there is nothing to worry about the word cancer resonates in your head. If you are going to get it this is the one to have. I think every man will arrive at this at some point in their life and awareness is so important. Pre knowing I had anything I never gave it a second thought but every male I know I am now badgering them to make sure they understand this silent time bomb. Don't wait for it to arrive, go looking for it.

I do seem to be texbook in my recovery and hitting benchmarks ahead of expected times. Some people can't believe I was back at work 3 weeks post op although I am working from home mostly. I work in IT so nothing to physical. I do feel exausted by the end of the day but am building up slowley.

I think my biggest move forwards was getting out of the house. After I physically felt better at home post op I did have some mental health issues abd would not leave the house. I think mainly due to having the catheter and being very self aware. I had so many fears and really bad anxiety. I was actually frightened all the time. Of what I could not tell you. Something snapped in me and snapped out of it and started going for short walks. I think went in to town with my wife (she really dragged me there) and had a nice lunch. I then realised there is a world out there and I have just been through this whole operation to enable me to live in it for a long time. Couldn't tie me down after that revelation.

I do consider my self very luck now with regards to side effects. Incontenence was a big worry for me but over the last two weeks I have come along in leaps and bounds and every week is a noted improvement. Although my wife has nick named me Tinkles. People do join these type of forums looking for answers to problems or are crapping them selves after a new diagnosis. I certainly hope I can help reduce somebody's worries or make someone feel a bit better or more positive by sharing my story. I have a strong sense of giving back somehow.

All the best Dave and hope you are making positive progress.

User
Posted 03 Oct 2023 at 08:55
Yorkiepaul. Just wondered how long did it take to get back continence ?
 
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