Diagnosed today, looking for support.

User

Posted 22 Jun 2022 at 22:31

Hello. I am new here and in many respects it’s the last place I’d want to be talking about something that is a surprise to me. I’m still in shock and can’t take it all in.

Not sure what I’m looking for? Support, help with understanding, help to get through this.

My story.

im a young chap of 49 (50 in only a few months) around 3 months ago whilst at the GP for examination of a hernia I asked for a blood test, mainly because I have high cholesterol and I like to keep a tab on that.
i mentioned that I had heard through a campaign on the radio ( I forget the station) Guys discussing prostrate cancer and a simple blood test is all that is needed. I also explained that on occasion I could have a few drops of pee, and i mean just a few drops, leak out after going to the loo. I don’t really remember the reply other than her ticking the box for the blood test and then examining my prostrate which she said felt fine.

the PSA came back as 7.1. I was told this was out of normal but would most likely be nothing but I’d be referred to the hospital. Some weeks later I find myself in front of another DR who examined me again and said he thought he could feel hardening to the right side so recommended a MRI and biopsy.
weeks pass , I started to have panic attacks which I’ve never suffered from before and general anxiety thinking about the scenario I found myself in.
eventually the MRI scan came with contrast so needle in the arm job. Two days later I got a phone call, cancellation on the biopsy do you want it tomorrow. I said yes. I didn’t bother to do any research on what was entailed, didn’t really want to know. All I assumed was it was up the bum and it would not be nice. Clearly that was not the case and the shock and terror that followed was quite possibly the worst experience of my life. Painful , not knowing what was going on, feeling like a staple gun was going off inside me. 24 biopsy later I was done.

the staff were fantastic to be honest but having no idea what would happen and equally not being told anything about the procedure before other than you will be numbed for pain.
two days later my balls turned blue and I was not prepared for this. I assumed it was bruising or blood but I went back to the hospital to get sure. I was given the all clear .

after 4-5 weeks that has settled down and to be fair I was feeling good.
today finally I got to meet the consultant Dr surgeon fella. I was immediately told I had cancer almost like I should have already known. I referred to some letter about my MRI that I had not received.
the rest was a bit of a blur however I had sound recorded the whole meeting on my phone as iPhones have a memo app that will record even if the phone appears to be off.( tip for others who may be reading this post)

from what I can tell is they want to remove my prostrate. I have mainly cancer on the right side but one biopsy on the left was positive. They don’t recommend radiotherapy or these granular things given I am so young and there is a small risk of that treatment causing cancer 10-15 years down the line.

obviously I am devastated, if m told it’s treatable and I will live but it’s still an enormous shock to me. I have a wife and 9 year old and it just shakes me to the core when I think of them .
I was told that one side my nerve can’t be saved and this will effect my erections and that I will not evacuate anymore. I don’t even know how to come to terms with that news.
then the incontinece post op and then going forward afterwards. I am really worried by all of this, what lies in store for me, how much my life will chance? How can I cope mentally. So much stuff like this racing through my head.

I have been scored as a Gleason 7 (3+4=7) and a grade group of 2

from what I can tell this is good if you can call cancer good. Although I still don’t quite understand and perhaps in a few days things might start to make sense.

i do have some confusion though. The surgeon said he would remove the cancer, the nurses afterward said they remove the whole prostrate. AI did ask the Dr at one point what happens afterwards, am I monitored for years etc. he said they they would to PSA tests to monitor and if all was good then after 5 years your good to go.

now I wonder because how can a PSA test be done if I no longer have a prostrate? Seems a pointless check. If any of you know different please let me know.

I’m more shocked about being messed up potentially for the romantic side of life and if my balls are disconnected then do I even still have an urge.
like I say this has literally happened today so like many of you that have walked this road before me I think you can appreciate the irrational state I’m in.

should I reach out for help ? Should I call this organisation? Or would I be wasting time.

i had it all planned today, I was going to get an all clear due to no symptoms or at best something minor. I vowed to donate £100 to a prostrate cancer charity as a nod to all the unfortunate men that had not been as lucky as me. How this changed.

what I will say is that I am also a YouTuber, in watch repair. (MyRetroWatches) I now feel obliged to somehow blog my story and spread some awareness. My audience subscribers is 40k and they will all be men from 30-70+ I feel it’s something I can do.

my only positive is that had I not heard that radio awareness to this I would be blissfully living my life now not knowing what would show up in the future. So perhaps that campaign saved my life!

Thank you for reading this far. Hopefully it makes sense and hopefully some of you might just give me reason to make sense of this.

Thank you.

User

Posted 23 Jun 2022 at 13:10

Bollyrotten, I have only just found out last week myself that I've got prostrate cancer, I'm a little older at 57 everything you are saying is exactly like my circumstances I was only getting up once in the night for a pee sometimes the odd dribble nothing else. I've had all my test and biopsy and told my prostrate needs to go, my consultant says i am T3b which he says has started to spread to my right seminal vesicular. I'm anxious and like yourself worried about ED my wife is very supportive and all she says is she wants me here so have the op and we'll deal with ED after.

We're on a journey but like everyone is saying we will stay positive and fight

Good luck👍

User

Posted 23 Jun 2022 at 09:29

Hi Bollyrotton,

As everyone has said it is completely normal for you to be feeling this way….things will seem better soon when you have your plan in place….hard to believe I know but so true. I thought life was over when we got the news…12 months on we’re in Greece enjoying holidays again.

I can only speak for my husbands experience as everyone is different but post op isn’t always so bad. My OH is a lot older than you and it was expected he would really struggle with continence, he has been pretty good from day one of catheter removal though. He had very slight leakage during the day at first and probably used a pad for a couple of months, more a confidence thing. He is completely dry now and no pads needed. (Get the squeeze app on your phone for pelvic floor exercises)

ED is a different story at the moment. He was originally put on HT (hormone treatment) for 6 months so any desire was gone and he still hasn’t got his testosterone back to a decent level. He hasn’t took any of the ED medication either. He has a pump but it’s an effort to get him to use it. There are many men who go on to have pretty good sex lifes post op, just making the effort to get back on track is needed. Lots of support needed from your wife too, I think important to always be able to talk about how you are both feeling and be really honest and open.

So yes life changes, but you certainly get used to new normals and life can get back to virtually how it was. Keep positive and determined. Follow all the advice given and I’m sure you will be fine.

Very best of luck

Elaine

User

Posted 23 Jun 2022 at 13:27

Firstly guys, thank you all for your replies. I am finding them hard to read as I just seem to be a wreck today. I woke up crying and that not happened since I was in nappies. All day I have been emotional so clearly the adrenaline has worn off from yesterdays shock and now I into the dark emotional hole.

I have today called the nurses of this charity. I spoke to Meg. She was very comforting and explained to me more things and some of the procedures along with recovery. Also taking the option to talk to someone of a similar age to me that has gone though it already. I dont know what I will say to this person yet but it may help.

I am scared, petrified even. and just a blubbering mess. I hope this stage does not last all that long.

Why me? why Now? why at 49, 2 months before my 50th that now seems somewhat ruined.

I appreciate many of you have been there so forgive my ramblings of emotion but it seems the only way for me to cope right now.

User

Posted 23 Jun 2022 at 01:18

Wow, so glad I read your post. Can we skip the cancer bit and talk about date changes on the IWC cal 8521, quite frankly it might be an auto but if that main spring ain't fully wound time stops at five past midnight.

Seriously Mike we have all been where you are. Once you are over the shock, and I can tell it is a shock, things fall in to perspective.

I was 53 at diagnosis, PSA 28 Gleason 4+5. Now four years later I may be cured and I'm living a rather happy life. You can click on my avatar read my profile to get my perspective on life. I hope you will realise that for a lot of men this is not as bad as it first seems.

You will find this a very active forum with some very knowledgeable people (about cancer, not watches). Over the next few months you will have some decisions to make and these people can help you, though none of us are medics, so your doctors are the experts not us.

Now for some specific points. They will remove the whole prostate. It's the size of a walnut, you don't need it any more. No surgeon is going to piss about trying to find the bad bits, he's going to rip the whole lot out and chuck it in the bin. Now on the bad side of the prostate, there are some nerves near by: they are going in the bin too. On the good side if there are some nerves near by he might leave a bit of prostate behind just to make sure he doesn't accidentally chop some nerves.

Afterwards they will monitor your PSA and it should be very low because you haven't got a prostate. But it won't be zero because they may leave some harmless bits behind, and because a tiny bit of PSA is made in other bits of the body, even women.

If the PSA goes up rapidly post op it may mean the cancer had already spread (not likely in your case).

After five years if you're still alive the surgeon carves a notch in his bed posts and says he saved your life. In reality a single cell that escaped may start a new cancer decades later. So five years is an arbitrary cut off, you will be monitored for the rest of your life.

As for balls being disconnected that isn't what happens, so unless you end up on hormone therapy (as I did for a few years) you will still have the urge.

If they cut nerves, sadly it is erectile nerves and that could be troublesome. These problems can be managed. If you keep reading all the latest posts you will pick up a lot of information.

Incontinence: could be a problem, happens to a few.

I could go on about cancer and no doubt will, but I'm more interested in your opinion on the JLC futurematic and if a small hook to stop over winding is perhaps over engineering?

Keep us informed.

Dave

User

Posted 23 Jun 2022 at 01:40

Hello Bollyrotton,

Your initial reaction to being diagnosed with PCa is very typical and at present you are finding it hard to come to terms with. It does get a little easier when you come to understand more about the disease and various treatments. So I would urge you to download or obtain a copy of the 'Tool Kit' available from this Charity here. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100 It tells you more about the disease and the treatment options (not all of which may be applicable for you for various reasons).

PCa is generally a slow growing disease which can sometimes happen to men in the forties or even in there thirties for a few but increases as men age. If all men lived to 100 they would nearly all by then have it, although most men die with it rather than of it, many not even being aware that they had it. Nevertheless having treatment for it does mean your chances of eradicating it or giving you more time have to be set against various side effects that man get to varying degrees.

It may have already been suggested to you but if you wish to have more children, you should bank your sperm before treatment.
To answer your question about why you would continue to need PSA tests after your Prostate was removed, it is necessary to monitor it because there is a risk of spread and an increasing PSA serves as an indicator. Asking and receiving answers like this is one of a number of advantages of belonging to this forum. Best advice comes from your medical consultant(s) but there is a lot of useful information members can give through accumulated experience and research.

From what has been said so far it seems your cancer has been found at an early stage, which means you have a better chance of responding well to treatment.

Your treatment will impact your wife in some respects and hopefully she will be very supportive; unfortunately not all partners are.

Edited by member 23 Jun 2022 at 01:44 | Reason: to highlight link

Barry

User

Posted 23 Jun 2022 at 06:57

Try not to get too stressed about it. It is a shock to be diagnosed with cancer, yes, but you get treated and you get on with your life. You're on a curative treatment path, and treatment success rates for prostate cancer are extremely good. It's not the end of the world, although it may well feel that way right now. I was diagnosed with prostate cancer in 2018, I got it treated (radiotherapy in my case) and four years later life has never been better.

You'll have regular (probably 6 monthly) PSA tests for the rest of your life, because the cancer can come back. About 1 in 3 men who have prostate cancer surgery do experience a recurrence of the cancer and go on to need radiotherapy.

Best wishes,

Chris

User

Posted 23 Jun 2022 at 08:13

BollyRotten many of your points raised will strike a chord most of us. Ring the nurses on this site today, they are brilliant and a two way conversation gets through a lot more info in a short period of time, you can ring them as often as you like and I think they can still organize a one to one anonymous chat with guys in your situation.

Dry organs can be out of this world and if, yes if you do not regain your erections it can be fun finding a solution. Incontinence is not guaranteed and you can start helping yourself now by doing pelvic floor exercises.

Thanks Chris

Ring the nurses 08000748383.

Edited by member 23 Jun 2022 at 08:14 | Reason: Missed word

User

Posted 24 Jun 2022 at 01:06

Sorry this is making you so anxious. It is not unusual to take things very badly at first. I think you should consider seeing your GP about anti anxiety medication. There is no point in suffering like this, when you can take medicine to get you through this bad phase.

Dave

User

Posted 24 Jun 2022 at 01:13

Okay, these are normal feelings for anyone diagnosed with any kind of cancer; try not to beat yourself up too much because it will get better once you have made a treatment decision and have a plan in place. I was 44 and John was 50 when he was diagnosed - he was fairly laid back about it all but I was a complete wreck, convinced that I was going to be a widow in 6 months. That was more than 12 years ago. He was only able to have partial nerve sparing but, like many men, can get an erection - ED is not a foregone conclusion and for those men who do have ED there are many options.

All prostate cancer treatment will leave you sterile but that is only a problem if you were planning on having more children. If that's the case, ask to be referred for sperm banking before you have treatment. Being sterile doesn't affect your erections or libido - lots of men have vasectomies a lot younger than you and carry on having sex.

How is your wife coping?

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

User

Posted 24 Jun 2022 at 07:57

Go to your GP and get something for the anxiety. There are very effective medicines which will control it. You'll feel MUCH better once you've got your full diagnosis - everyone does. It's the uncertainty that's so stressful.

All the best,

Chris

Edited by member 24 Jun 2022 at 07:58 | Reason: Not specified

User

Posted 25 Jun 2022 at 07:03

Just remember that many of the people on here are mostly those with ongoing issues. The majority of men who join us for support have their treatment which is successful so they don't contiue here. It's the same on car forums, many of the postings are about problems people experience with a particular model and want to know more about it. You would think reading this that everybody has problems which is not the case. Occasionally, patients come back to say they are doing well which is good news for everybody but most are just happy to not post any further when they have done well.

Treatment has moved on considerably with better results and ways of minimizing problems where these arise in recent years. Your chances of doing well are very good. So don't worry you are going to be affected like some of the few worse cases here. Maybe getting away from PCa cases for a while is a good idea and perhaps an idea to get involved in something else to help take your mind off possibilities with PCa.

Barry

User

Posted 26 Jun 2022 at 01:25

Hi Bollyrotten,

i understand the shock but keep a positive attitude. That’s key to a quick recovery. I had my surgery a couple of weeks ago and I’m still at the catheter wearing stage.

It’s uncomfortable but you get used to it and it comes out after two weeks. Drink more than 2 litres of water a day post op. I can’t stress that enough. I thought I was drinking enough but I wasn’t so I got an infection. That meant the catheter staying in another week. That’s me told. I’ve been drinking the right amount of water and after five days of antibiotics it’s all good.

Can’t speak about incontinence but you have age on your side. The pelvic floor exercises should see you right and yes, it will be life changing.

The life changing bit is scary, but I consider myself fortunate. I could’ve missed that recent campaign and not had a blood test. It was actually the first I’d heard of it.

I had my prostate removed with no nerve sparing and my wife said she’d rather have me alive rather than memories of an erection. Maybe not those exact words.
The biopsy needs to come with a warning though. The doctor did say it was worse than a colonoscopy which it was, but I wasn’t prepared for the aftershock.

This is a great place for support and information so ask questions about anything. Some users keep a diary so you can follow their journeys and maybe get some answers to the questions you have.

User

Posted 26 Jun 2022 at 10:39

I've had an indwelling catheter twice. It's not really a problem. I could even walk fairly briskly as long as the bag was fairly empty.

At night just wore briefs. Stand the night bag in a washing bowl or similar.

On removal day I was worried about it being pulled through the new anastomosis after just a week post op. I insisted I would pull it out myself so that I was in control if there was pain or resistance. The nurse just deflated the balloon and supervised. Turned out to be a fuss about nothing. I hardly felt a thing, certainly no pain.

Good luck

Cheers

Bill

User

Posted 26 Jun 2022 at 11:03

Hi BR

I hear you! Shock, disbelieve, it can’t be happening to me I feel healthy plus so much more. Lean on this forum, no question is a silly question. I’ve had great support from wives whose husbands were ahead of mine and from guys too who have given me (us) great support. It’s a bloody ordeal that’s for sure (I refuse to call it a journey). Once you have a plan you will feel more in control. My oh is 3.5 months post op and is doing great. No continence issues, ED is another story and something we are about to embark working on. It’s tough, lots of great advice on here. The specialist nurses on here are fabulous and can help with what you are going through mentally. It’s hard to process (not sure my OH has yet).

The sooner you start to do your pelvic floor exercises the better 👍 hopefully you have a cancer nurse specialist to talk to as part of your surgical team. You don’t mention chatting with an oncologist and I’m assuming that hormone therapy/rt is not an option but you need that explaining to you so you are fully aware of your situation. Yes the surgery is radical, it’s doable and i never throught that 3.5 months post op we would be where we are! Hang on in there and lean on us!

User

Posted 26 Jun 2022 at 11:04

My husband ended up having his catheter in for 4 weeks as he had a very slight leak in bladder after bladder neck reconstruction, so they left it purely as a precaution.

He managed really well with it. I had bought instilagel incase it rubbed against the tip of penis but he never got any discomfort. He also had no leakage from it so at night he felt comfortable sleeping with no underwear and just dropped the bag in a bucket. In the first week we had one day where we probably walked a bit too much and the urine turned pink. There were also a couple of times where he would get little blood clots just from debris I think, but it would block the catheter. We phoned the hospital and could have gone back to get it flushed but after some manoeuvring managed to get it flowing again. We did a long car journey, few hour train journey all with no problems.

We did have one incident where we went out for our sons birthday for a meal. He had gone to the toilet to empty his bag and then came back to the table. When we went to leave the restaurant there was a little puddle on the floor and he had a wet leg 🤦🏻‍♀️ Moral of this story….never forget to close the tap after you have emptied your bag 😂

I thought he would hate the catheter and really struggle but he just found a routine with it and took it in his stride. Hope you have a similar outcome if you do have the op.

Just to add it was Christmas time and when it was getting blocked a bit I did worry. Christmas day I posted on the forum for advice and got a few really helpful responses almost immediately….this forum and the people made things so much easier for us.

Edited by member 26 Jun 2022 at 11:13 | Reason: Not specified

User

Posted 26 Jun 2022 at 12:03

Hi Bollyrotten, just to give you some good news. My OH was diagnosed in Feb 2022 with T2a, Gleason 4+3 N0M0. We looked at all the options and OH finally decided to have robotic surgery 19th May. He is recovering very well, doing long walks, totally dry at night and using 2 pads a day . ED is slowly showing slight signs of improvement despite only one sided nervesparing. OH is 68.

Wishing you and your family all the best

User

Posted 26 Jun 2022 at 12:53

Catheter ain't too bad. I actually found it quite convenient when drinking with friends, and nice to be able to get a full night's sleep. Not saying I wasn't glad to be rid of it after a week though.

Dave

Show Most Thanked Posts

User

Posted 23 Jun 2022 at 01:18

Seriously Mike we have all been where you are. Once you are over the shock, and I can tell it is a shock, things fall in to perspective.

If the PSA goes up rapidly post op it may mean the cancer had already spread (not likely in your case).

As for balls being disconnected that isn't what happens, so unless you end up on hormone therapy (as I did for a few years) you will still have the urge.

If they cut nerves, sadly it is erectile nerves and that could be troublesome. These problems can be managed. If you keep reading all the latest posts you will pick up a lot of information.

Incontinence: could be a problem, happens to a few.

I could go on about cancer and no doubt will, but I'm more interested in your opinion on the JLC futurematic and if a small hook to stop over winding is perhaps over engineering?

Keep us informed.

Dave

User

Posted 23 Jun 2022 at 01:40

Hello Bollyrotton,

From what has been said so far it seems your cancer has been found at an early stage, which means you have a better chance of responding well to treatment.

Your treatment will impact your wife in some respects and hopefully she will be very supportive; unfortunately not all partners are.

Edited by member 23 Jun 2022 at 01:44 | Reason: to highlight link

Barry

User

Posted 23 Jun 2022 at 06:57

Best wishes,

Chris

User

Posted 23 Jun 2022 at 08:13

Thanks Chris

Ring the nurses 08000748383.

Edited by member 23 Jun 2022 at 08:14 | Reason: Missed word

User

Posted 23 Jun 2022 at 09:29

Hi Bollyrotton,

Very best of luck

Elaine

User

Posted 23 Jun 2022 at 13:10

We're on a journey but like everyone is saying we will stay positive and fight

Good luck👍

User

Posted 23 Jun 2022 at 13:27

I am scared, petrified even. and just a blubbering mess. I hope this stage does not last all that long.

Why me? why Now? why at 49, 2 months before my 50th that now seems somewhat ruined.

I appreciate many of you have been there so forgive my ramblings of emotion but it seems the only way for me to cope right now.

User

Posted 23 Jun 2022 at 13:34

Thanks for your words. for now I can address the watch question, not really with an answer though as I have never worked on IWC or many big brands or modern watches. I would say that if its stopping at date change then something is not right, the way they all work is though a train of wheels and springs. at normal date change rather than quickset which is on a different system. The watch is at its most strain ad the day wheel is being moved by a finger and fighting the load held by a spring. So either your mainspring is not producing enough power through the train to make it get over the last hurdle. I would get the watch serviced as it could be as simple as dried oil in the pivots slowing a watch down. or if its an old piece then the mainspring could be loosing some power. That said ive re-used many 30 year old mainsprings that still have enough load to in them to keep going.

Originally Posted by: Online Community Member

Seriously Mike we have all been where you are. Once you are over the shock, and I can tell it is a shock, things fall in to perspective.

If the PSA goes up rapidly post op it may mean the cancer had already spread (not likely in your case).

As for balls being disconnected that isn't what happens, so unless you end up on hormone therapy (as I did for a few years) you will still have the urge.

If they cut nerves, sadly it is erectile nerves and that could be troublesome. These problems can be managed. If you keep reading all the latest posts you will pick up a lot of information.

Incontinence: could be a problem, happens to a few.

I could go on about cancer and no doubt will, but I'm more interested in your opinion on the JLC futurematic and if a small hook to stop over winding is perhaps over engineering?

Keep us informed.

User

Posted 24 Jun 2022 at 00:19

I have had a terrible day. Too many tears too many questions.

i have no idea how to make sense of this.

i worry so much now about ED, being sterile, just so much like this . What it will do to me mentally never mind physically.

What do I do? I’m now feeling desperate

User

Posted 24 Jun 2022 at 01:06

Dave

User

Posted 24 Jun 2022 at 01:13

How is your wife coping?

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

User

Posted 24 Jun 2022 at 07:57

All the best,

Chris

Edited by member 24 Jun 2022 at 07:58 | Reason: Not specified

User

Posted 24 Jun 2022 at 23:39

Thank you Lyn

firstly my wife. She is holding up well. She is not emotional like me but she understands and is supportive. She has her own medical issues right now so we are both going through it. Coupled with a 9 year old.

today has been better but still not great. I saw my mum of 85 it was good but still upsetting.

i just feel overwhelmed, scared of the op as I’m assuming that’s the way I will go. Scared about recovery and the ED.

I’ve tried to stop reading this forum too as while I’m so hypersensitive I seem to find many of the more horror stories which sends me further into the dark.

i need to find some positive experiences

User

Posted 25 Jun 2022 at 07:03

Barry

User

Posted 25 Jun 2022 at 14:45

@eric59

thank you. I know what your saying I just think I am in the eye of the storm right now.

im recommended surgery by my consultant and I don’t really fancy the other options due to how long they take and other cancer issues they could cause 10-20 years down the road. Bowel cancer is already in my family so I may have to deal with that in the future too.

my consultant said they are booking for next month so perhaps I don’t have that much time. Equally getting it all out the way quickly might be an easier way for me to deal with it.

As for alcohol it the only thing that’s putting me to sleep.

it’s losing one side of my nerves that scaring me the most.

User

Posted 25 Jun 2022 at 23:23

Perhaps we can bounce off each other Eric.
i still can’t bring myself to read too much stuff. I was told for me at 49, 2 months off being 50 that surgery is the favoured option due to faster recovery due to young age. Also the secondary risk of later down the line if I did the radiotherapy and hormone.

surgery is final , it’s done no going back but equally treatment is not prolonged.
my concern is recovery, the catheter sounds horrible. Incontinence a worry and then the possibility for ED and then no more ammunition ever again.

My mental state leading up to this will be a challenge and then afterwards waiting to see if he will work again. If he does, and I really hope so, then I can I feel like it’s all over.

im told they can’t spare the nerves on one side…

User

Posted 26 Jun 2022 at 01:25

Hi Bollyrotten,

i understand the shock but keep a positive attitude. That’s key to a quick recovery. I had my surgery a couple of weeks ago and I’m still at the catheter wearing stage.

Can’t speak about incontinence but you have age on your side. The pelvic floor exercises should see you right and yes, it will be life changing.

The life changing bit is scary, but I consider myself fortunate. I could’ve missed that recent campaign and not had a blood test. It was actually the first I’d heard of it.

This is a great place for support and information so ask questions about anything. Some users keep a diary so you can follow their journeys and maybe get some answers to the questions you have.

User

Posted 26 Jun 2022 at 10:07

I don't think anyone is going to come forward with good experiences of having a catheter - "it was great, I loved every minute and can't wait to do it again!"

What you will hopefully get is that for most people it isn't a big deal. Post-op, it is a relief to be able to sleep through- especially if it was hard to sleep in the hospital or you have had years of waking in the night to have a wee.

In my experience, the thought of a catheter is worse - people who feel embarrassed or ashamed and then start to feel really anxious about it are more likely to describe the experience as terrible.

It is just a necessary part of getting rid of the cancer - for a few days, seems a small price to pay.

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

User

Posted 26 Jun 2022 at 10:39

I've had an indwelling catheter twice. It's not really a problem. I could even walk fairly briskly as long as the bag was fairly empty.

At night just wore briefs. Stand the night bag in a washing bowl or similar.

Good luck

Cheers

Bill

User

Posted 26 Jun 2022 at 11:03

Hi BR

User

Posted 26 Jun 2022 at 11:04

My husband ended up having his catheter in for 4 weeks as he had a very slight leak in bladder after bladder neck reconstruction, so they left it purely as a precaution.

I thought he would hate the catheter and really struggle but he just found a routine with it and took it in his stride. Hope you have a similar outcome if you do have the op.

Edited by member 26 Jun 2022 at 11:13 | Reason: Not specified

User

Posted 26 Jun 2022 at 12:03

Wishing you and your family all the best

User

Posted 26 Jun 2022 at 12:53

Catheter ain't too bad. I actually found it quite convenient when drinking with friends, and nice to be able to get a full night's sleep. Not saying I wasn't glad to be rid of it after a week though.

Dave

User

Posted 02 Aug 2022 at 23:46

Hi Bollyrotten.

Hope you are doing well.

I wanted to say your story really hit home with me. I went through the exact same emotions. I have a son of 9 too and it was a tough thing to have to tell him. But we did it in a very child friendly way but gave him all the details but in a way that he was able to relate to and understand without being scared and he has been great. (We compared it to pokemon which he loves)

I was diagnosed 2 months before my 40th birthday and felt that it was ruined too. But I did manage to have a small party in the garden with close family. I’ll have the proper party next year and everyone will think I’m a year younger!!

I had my surgery at the end of June and am 5 weeks post op now. It was a relief to get the catheter out but having it in wasn’t as bad as I thought.

I wanted to say that for me it’s not as bad as I had thought afterwards. I did have a little incontinence afterwards but am mostly dry for the last 2 weeks or so. Just an odd drop during times of stress like coughing bending or going down stairs. But that is getting less and less by the day.

As for the emotional side of things I found it very tough at first. It’s still a tough at times but you do learn to cope. I contacted a cancer support group over here and it was great to talk to a counsellor (not something I ever dreamed I would do) it did really help. A very kind gent from this group contacted me privately and pulled me out of a pit and gave some great practical advice.

Keep talking and it will help.

Wishing you all the best.

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Posted 02 Aug 2022 at 23:51

I forgot to mention above that I too was told that they could only spare the nerves on one side. After the op the surgeon said he had managed to save some nerves on both sides. So there may be hope there. As for the little chap working again it’s early days but I have noticed a very slight stirring. Nothing dramatic but perhaps enough to reassure me that his days of standing to attention may not be over after all.

User

Posted 03 Aug 2022 at 17:32

Same age (50 at diagnosis), same Gleason and grade group, same recommended path.

Also a bit of a cock-up in how I found out. Also a Youtuber (although I elected to not go public as I didn't want to deal with people's reactions - it's bad enough dealing with your own and family's reactions. That's a personal choice for you).

Have a read of my profile. I hope you'll find it encouraging. And do keep asking questions. Someone on here will have an answer for pretty much everything you can think of.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

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