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User
Posted 18 Dec 2021 at 10:00

Hello my name is Steve, just turned 51 and I have been diagnosed with Prostate cancer a couple of days ago.

4 weeks ago my wife noticed my urine flow was stop start and not strong and went to my GP. I never expected the result to come back that there was something wrong with me after the PSA which was not that high to be honest at 3.98.

You all know what happens next, MRI and Biopsy and results have come back with T2 and gleeson score of 7. (3+4)

I am still in shock at the time of writing this, hearing those words of cancer. My wife seems to be further on with dealing with it but I cant face it, get my head around it and don't want to look at the paperwork yet.

Did anyone else take a while to accept it and move forwards? 

Nice to meet you all :)

 

 

User
Posted 18 Dec 2021 at 19:59
Steve, my husband was diagnosed 12 years ago at the age of 50. His first experience was sitting in a clinic full of men in their 70s and 80s - when he was told it was cancer, he just said "it can't really apply to me because I am not old like everyone else here."

He had surgery, followed by a recurrence 2 years later which meant radiotherapy and hormone treatment. His coping strategy throughout has been to read nothing, ask no questions and instantly forget any bad news. I have done all the research and thinking and worrying and I have to admit that his strategy has worked well!

Don't feel that you have to submerge yourself in research immediately - but do keep communication lines open with your wife ... there is a reason why people say this is a couples disease and your choices / decisions will directly affect her. I was 44 when John was diagnosed and it has changed both our lives.

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

User
Posted 18 Dec 2021 at 14:03

Hi Steve, 

Sorry you find yourself in this club, but you will find excellent support and advice on this site. 

It's a huge thing to get your head around and it affects us in different ways. Your diagnosis is similar to mine, T2 Gleeson 7(4+3). I am now two years post surgery and doing well, so please take this as a positive as there are treatment options for you to consider. 

If you can't face reading the publications on this site just yet, I'm sure your wife will as it will help enormously. Perhaps you could phone one of the nurses on this site (number top of page) for a chat.

You're not alone Steve.

Good luck. 

Kev.

User
Posted 18 Dec 2021 at 14:08
I'm surprised that your GP referred you to the urology team with that score! But its good that they did!

There's lot of very knowledgeable people on here who will be able to answer all of your questions. And as Kev said above - you are not alone!

Chris

User
Posted 18 Dec 2021 at 16:31

Thanks Kev, Peter and music man. I have updated my bio a little bit more now and am sure i will continue to ad to it with dates and decisions made. 

I am so thankful for my wife telling me to go to the doctors or I would never of known. 

I will reach out to the nurses on here as it seems the more I read, the more questions seem to spring up and as Peter said, the side effects are the things that really worry me. 

I finally got to the point today that I can accept that I have cancer so think that hurdle is a win for me, now to get my brain around the rest of it. 

The next date for me is the multi disciplinary meeting on the 24th December (what a bloody day being Christmas eve) where they will discuss my case and then hopefully find out what options are available to me for treatment. 

Thank you for the welcome guys. Am sure I will post more here soon 

Steve 

 

 

User
Posted 18 Dec 2021 at 17:42

Sorry you have joined our club but things will improve when you get your head around it some great advice on here some very clever people I was gleeson 9 this time last year after 37 rounds off radiotherapy and hormone therapy every 3 months ongoing for 2 years my PSA is now 0.01 from 24.9 and feeling really well hopefully it will continue oncologist really pleased with my progress I am sure you will do well too good luck gaz

User
Posted 18 Dec 2021 at 20:28
Steve

Take your time making any decisions that you have to make. You do have the time to think things through and make the right decisions for you ( and your wife). The MDT on 24/12 is only the start. See what the recommendations are and also ask why they have they have come to that decision.

And, in the interim, you can always ask about anything that occurs to you here. There's a lot of people who have been down this road and can help you out.

Chris

User
Posted 03 Jan 2022 at 15:02
If it's any comfort, Steve, I went down the HT/RT route (recommended in my case) and didn't find it too bad at all.

Make sure that you get a separate appointment with an oncologist to discuss RT; urologists have a tendency to recommend surgery because that's what they themselves do. It's important to get the balanced picture.

Best wishes,

Chris

User
Posted 03 Jan 2022 at 16:21

Hi Steve,

I did have the option of AS but it only lasted a couple of years and it was then about choosing a treatment. I went for surgery and nearly 2 years on all is currently well and no significant side effects. Have a look at my profile if you are interested in knowing more.

Good luck with your descision

User
Posted 03 Jan 2022 at 17:25

Hi Steve I went down radiotherapy hormone therapy route 37 fractions last March found it tolerable same with hormone therapy mine was gleeson 9  PSA 24.9  last PSA 0.01 and feeling ok  10 months on good luck whatever way you go. gaz

User
Posted 03 Jan 2022 at 18:21

I am sorry you find yourself one of this group. My husband went for a check for similar reasons to you and we found out it was cancer on  Christmas eve 2010. He had radiotherapy and hormone treatment initially and several different treatments over the following years but we enjoyed several good years and did loads of things. Your wife will give good support and it is really important to have another pair of ears during consultations. I went to virtually every appointment with him and it was important for me too to feel involved in decisions and to help keep track of things.

Treatments are improving all the time and I hope that you have many symptom free years ahead of you.It can be  managed so well so that your life can continue as normally as possible.

Every good wish to you and your wife. X

User
Posted 03 Jan 2022 at 19:22
As suggested by someone else above, you really need to see an oncologist as well as a surgeon - otherwise you are not really making an informed choice.

How long from decision to operation varies significantly around the country. We have a couple of new members here recently who had their op within 4-6 weeks of deciding - in other areas, there is a delay of 3 - 4 months. If you decide on surgery but there is a long delay, ask whether you can have hormone treatment in the meantime.

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

User
Posted 03 Jan 2022 at 19:38

Hi Steve,

This is such a difficult time getting your head around everything and making the decisions. You will definitely feel better when you have decided best route for you.

I’ve done all the research and organising for my husband and then we just discuss everything and make the decisions together.

My OH was in a very different situation to you, and surgery wasn’t really given as an option because it had spread to other areas as they thought (turned out to be just one lymph node) we ended up getting a private second opinion and my OH very recently had his surgery. He is quite a few years older than you but he really wanted to have surgery. It is really early days and everyone is different but so far he seems to be doing really well. In terms of pain, he had the pain relief needle in his back and then I kept him on paracetamol for about 4 days after coming home…but that was just precautionary. He hasn’t complained of being in pain at any point, slightly uncomfortable sometimes but that’s it.

You're doing the right thing speaking to everyone and finding out as much information as you can. We ultimately went with our gut and we’ve said we won’t have any regrets as we think that’s best for us at this point.

Best of luck to you and your wife with your decision.

User
Posted 03 Jan 2022 at 21:15

Hi Steve,

Like you I also have a telephone appointment on 5th Jan to discuss choices. I had my oncologist appointment just before Christmas. The recommendation of the MDT was surgery and I am probably leaning towards that but I suppose there is no right or wrong decision when you are offered these choices. It's down to how you feel about it. I have heard from someone else under treatment in my area that the waiting time (back in November) for prostatectomy was three months, which is a bit concerning and Omicron isn't going to help matters.

I was told to start pelvic floor exercises at the time of diagnosis, although the didn't really start in earnest until just before Christmas. I couldn't discipline myself to do them regularly. However I heard about the Squeezy NHS App from a post I read on this forum (thank you who ever it was). I have found the App really helpful in keeping up with the exercises.

I know how you feel. It's such a lot to take in when it just comes as a bolt out of the blue.

Chris

User
Posted 04 Jan 2022 at 00:23

At your age, most men have surgery where this is an option because where the RT alternative is adopted, there is normally more years for the radiation to initiate other cancers that can happen in a minority of cases even many years later. In need, RT can and quite often is given as a follow up to treat cancer beyond where surgery can go, whereas surgery after RT is much more difficult and not all surgeons will attempt it. Surgery can result in temporary incontinence over varying periods and in very very few men permanent incontinence. Surgery can mean men receive more of an erection naturally over time, particularly if the nerve bundles are saved although there are other mechanical and chemical ways to help. With RT erections gradually become less so over time usually, but incontinence is not such a problem as with surgery. Hormone Therapy usually accompanies RT and this adds to side effects. Some men are affected more than others and it's a good idea to read up on treatments and potential side effects. I recommend down loading or obtaining a hard copy of the Tool Kit which covers this in greater depth. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

When PCa is detected at an early stage, some men defer radical treatment until monitoring indicates radical treatment is advisable. However, the longer a man relies on AS the risk of the cancer becoming more advanced increases and sometimes monitoring fails to determine the critical point. A man must consider what his consultants say but also timing and then make his decision on the options open to him.

Best of luck on your cancer journey.

 

 

Edited by member 04 Jan 2022 at 00:23  | Reason: to highlight link

Barry
User
Posted 04 Jan 2022 at 08:03
Just one thing others have missed, you have flow problems, RT may not fix those, RP will remove the constriction. May give you the opposite problem but it will definitely remove any constriction caused by your prostate!
User
Posted 04 Jan 2022 at 08:09

francij1 beat me to it. I think that is a very strong argument indeed. It was decisive in my case and boy, as I promised him, I think of my surgeon every time I pee (it used to hurt). At 51, you should overcome ED at a canter and UI passes for almost all (have you had an MRI to gauge your chances on the side effects? A really important step IMO)

User
Posted 04 Jan 2022 at 08:15

On pain, I was TERRIFIED of the op., and that was part of it, so I feel you. I bought a hernia support belt before but did not put it on for 2 days because the physio nurse had scoffed, hard. BOY was that a relief when I finally did: revolutionary. I had a big (ish: 2 inches?) scar: most have a tiny one under the navel. So YMMV but that essentially took pain out of the equation. The aftermath of major surgery is more general discomfort/shock than pain I found.

ADD I did NOT consider the catheter and bag a feature. It was the first taste of sleeping through the night and I soon got used to the day bag. A bit of basic hygiene at the tip and no discomfort at all. end ADD

Edited by member 04 Jan 2022 at 08:41  | Reason: typos

User
Posted 05 Jan 2022 at 12:25
Good. Always best to make a decision. I had surgery very similar to an RP in 2019 (my prostate cancer diagnostic MRI picked up that I had an unrelated kidney tumour, so I had my left kidney removed!) and didn't find it too bad at all. My first stay in hospital and, weird though it sounds, I found the whole experience rather enjoyable 🙂. Don't give pain a second thought: you'll be doped up to the eyeballs on intravenous morphine and you won't feel a thing - you'll be away with the fairies.

It does take quite a few months to recover from major abdominal surgery. Lots of internal muscles get cut and they take quite a while to heal. Just listen to what your body tells you, and when it hurts, STOP.

Very best wishes,

Chris

User
Posted 05 Jan 2022 at 17:55

That's a big step forward Steve.

Good luck with your operation. 

Kev.

User
Posted 07 Jan 2022 at 11:44

So finally it is coming round now. Pre Assessment this Monday followed by pelvic floor class and Prostatectomy is booked for Wednesday 26th Jan. 

Have to be honest to say im nervous but has to be done and then road to recovery :)

 

User
Posted 07 Jan 2022 at 15:21

Well done, Steve. 

Don't be nervous. I had my RALP two months ago and I'm still here!

Pain minimal. Discomfort moderate. You'll be fine. 

User
Posted 07 Jan 2022 at 17:40

Not something to look forward to Steve, but it is good news you have a very quick date for surgery. The situation is so dire in my area that you couldn't even be seen privately as quick as that. I have found out today that there are 23 prostectomy patients with the same Gleason score as me ahead of me in the NHS queue. They just stick you on Zoladex until your turn finally arrives, whenever that will be.

Keep up with the squeezy exercises in the meantime. Someone has advised me to start taking vitamin D and C. Good luck. Chris

User
Posted 07 Jan 2022 at 18:17

There is a bit about vitamins on the NHS website.

https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-c/

Interesting to note vitamin C helps with wound healing

User
Posted 09 Jan 2022 at 10:23
Good lad Steve and welcome to the club! Hopefully things will be much easier for you now that you have made a decision and got a surgery date booked in. None of us want to be here but we've just got to keep on going and get through it. My OH was in a very similar position to you. 56, relatively low PSA (4.6), Gleason 7 (4 + 3) T2C. TBH we didn't even consider RT as he was certain he wanted the cancer cut out of him and wasn't keen on hormones etc for long periods of time. He had RARP on Dec 8 and is now recovering. The worst bit was the build up to the op! It's the not knowing and apprehension that was the worst for us. Once he had the op (which was nowhere near as bad as we thought it would be) we could just crack on with the recovery process and getting him better, good food, lots of rest, plenty of liquid etc. OH was given codeine tablets but didn't need them. Only took a few paracetamol. So try not to worry too much. I'm sure your wife will do a great job of taking care of you. Good luck with it all!
User
Posted 09 Jan 2022 at 13:46
Very few people require vitamin supplements unless your diet is vitamin-deficient. I really wouldn't bother!

Best wishes,

Chris

User
Posted 12 Jan 2022 at 15:48

All the best Steve

User
Posted 12 Jan 2022 at 16:03
VitaminD supplements in a UK winter are a must!
User
Posted 19 Jan 2022 at 14:03
User
Posted 20 Jan 2022 at 18:33
Hi Steve,

I was the same as you, worried more about the actual surgery than the cancer itself. I am 60 and had never spent a night in hospital. I had my RARP last October, went in 715am...well pushed in by OH, on a Tuesay morning. Saw the the anethatist briefly then the surgeon then down to theatre. I went out like a light on the pre-med without waiting for the big one lol. Woke up what felt like 10 seconds later back in the ward. Fortuantely the main hospital was full so they sent me to the Nuffield with a private room, television shower etc. Uncomfortable few hours when first coming round then the pain killers kick in. Watch the opiates and avoid if you can as they bung you right up! Anyway i was back home the following evening watching television in my own house.

The operation itself is a breeze, you wont know anything about it. The actheter is annoying more than anything but again not too bad and only in for two weeks hopefully. I went out and about with mine sloshing around my leg, its no big deal. Can get a bit sore towards the end but you can get some topical cream from the chemist if you need it. Catheter removed and no need for pads, keep up the pelvic floor exercises! Any questions feel free to ask.

User
Posted 20 Jan 2022 at 22:02

Hi Steve,

As I knew already my husband was going to be in for 2 nights, I sent him in with prune juice (for constipation), cranberry juice (for infection) & peppermint tea bags (to release any gas). Although he was just on paracetamol coming home, I kept it up for about 4 days whether he felt he needed it or not….also the movicol he was prescribed for constipation, he had 2 sachets twice a day until they were gone. I was expecting that to be really difficult for him but preparing for the worst seemed to help it not be too bad.

He woke up in recovery from the op asking what time he was going down 😂😂 he ended up with the catheter in for 4 weeks (just took out yesterday) and although he’d rather not have had it he never really had any pain or discomfort from it (I did purchase instilagel just in case)….just often the feeling he wanted to pee himself. He did rest when he came home but he felt much better in himself than he ever expected. He’s took it all in his stride and not over worried (I’m incredibly proud of him❤️). Wishing you all the very best for your op and a very speedy recovery 😊

User
Posted 21 Jan 2022 at 08:51
Very best wishes for your surgery, Steve. You've come a long way since your initial post! Perhaps it would be as well to change the title of this thread now?

All the best for Monday,

Chris

User
Posted 21 Jan 2022 at 12:13

Hello Steve,

I had my Op at the medway Maritime Hospital last march after Eastbourne cancelled, glad i went

to medway for the surgery it was nearer to home and my op went really well and just kept in for extra

day because Blood Pressure being a bit low , the staff were fantastic and cannot fault treatment.

Prior to surgery during lockdown to say i was scared of the op would be an understatement 

Nether had surgery before apart from a vasectomy  and can honestly say the vasectomy was far more

painful!  more of discomfort for me post surgery with trapped gas which is common.

I took a some toiletries in wash bag and night gown and phone headphones with a good youtube music playlist.

I know what you are going through try not worry it will over before you know it

Best Wishes 

John

Show Most Thanked Posts
User
Posted 18 Dec 2021 at 14:03

Hi Steve, 

Sorry you find yourself in this club, but you will find excellent support and advice on this site. 

It's a huge thing to get your head around and it affects us in different ways. Your diagnosis is similar to mine, T2 Gleeson 7(4+3). I am now two years post surgery and doing well, so please take this as a positive as there are treatment options for you to consider. 

If you can't face reading the publications on this site just yet, I'm sure your wife will as it will help enormously. Perhaps you could phone one of the nurses on this site (number top of page) for a chat.

You're not alone Steve.

Good luck. 

Kev.

User
Posted 18 Dec 2021 at 14:08
I'm surprised that your GP referred you to the urology team with that score! But its good that they did!

There's lot of very knowledgeable people on here who will be able to answer all of your questions. And as Kev said above - you are not alone!

Chris

User
Posted 18 Dec 2021 at 14:56

Hi Steve,

Your wife is switched on and grounded.  It's easy to put off going to the GP and earlier you go the better.  When you're diagnosed they call it the new normal.   Diagnosis is one of the worst times as it's all new, but you can very probably be thankful it was found now as there is a big chance you'll live a normal lifespan.   You'll get used to it.   

Tolerance of side effects is something you need to think about.  For example a surgeon will likely say you will may have incontinence for up to 6 months after an operation and might need tablets to get an erection.  There are quite a few treatment options although most have surgery or radiotherapy.  Brachytherapy might be an option too.

There's quite a lot to learn and people are often advised to download the Toolkit in publications on this website.

You might fill in your profile with more details and not be shy about being open.  Sometimes people's wives write on here because sometimes the wife is very concerned, more than the man or because the man doesn't want to for various reasons.

I think, be glad it was found and move on being ready to make decisions on treatment as they offer you options.  Keep in touch, people will help.

All the best,
Peter

Edited by member 18 Dec 2021 at 16:20  | Reason: Not specified

User
Posted 18 Dec 2021 at 16:31

Thanks Kev, Peter and music man. I have updated my bio a little bit more now and am sure i will continue to ad to it with dates and decisions made. 

I am so thankful for my wife telling me to go to the doctors or I would never of known. 

I will reach out to the nurses on here as it seems the more I read, the more questions seem to spring up and as Peter said, the side effects are the things that really worry me. 

I finally got to the point today that I can accept that I have cancer so think that hurdle is a win for me, now to get my brain around the rest of it. 

The next date for me is the multi disciplinary meeting on the 24th December (what a bloody day being Christmas eve) where they will discuss my case and then hopefully find out what options are available to me for treatment. 

Thank you for the welcome guys. Am sure I will post more here soon 

Steve 

 

 

User
Posted 18 Dec 2021 at 17:42

Sorry you have joined our club but things will improve when you get your head around it some great advice on here some very clever people I was gleeson 9 this time last year after 37 rounds off radiotherapy and hormone therapy every 3 months ongoing for 2 years my PSA is now 0.01 from 24.9 and feeling really well hopefully it will continue oncologist really pleased with my progress I am sure you will do well too good luck gaz

User
Posted 18 Dec 2021 at 19:59
Steve, my husband was diagnosed 12 years ago at the age of 50. His first experience was sitting in a clinic full of men in their 70s and 80s - when he was told it was cancer, he just said "it can't really apply to me because I am not old like everyone else here."

He had surgery, followed by a recurrence 2 years later which meant radiotherapy and hormone treatment. His coping strategy throughout has been to read nothing, ask no questions and instantly forget any bad news. I have done all the research and thinking and worrying and I have to admit that his strategy has worked well!

Don't feel that you have to submerge yourself in research immediately - but do keep communication lines open with your wife ... there is a reason why people say this is a couples disease and your choices / decisions will directly affect her. I was 44 when John was diagnosed and it has changed both our lives.

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

User
Posted 18 Dec 2021 at 20:28
Steve

Take your time making any decisions that you have to make. You do have the time to think things through and make the right decisions for you ( and your wife). The MDT on 24/12 is only the start. See what the recommendations are and also ask why they have they have come to that decision.

And, in the interim, you can always ask about anything that occurs to you here. There's a lot of people who have been down this road and can help you out.

Chris

User
Posted 03 Jan 2022 at 13:21

Hi all. So after the MDT meeting, I have only been given 2 options. Prostectomy or Radiotherapy combined with Hormone treatment. 

I did ask why AS was not an option and it is because out of 25 biopsies, 13 are fast growing so was told that in 6 months, I would be back to same thing again. 

Meeting with consultant on Wednesday 5th Jan so guess will see what details he says. To be honest am scared stiff as surgery scares the crap out of me but radiotherapy side effects seem just as bad. 

I just don’t know which way to turn now 😢

User
Posted 03 Jan 2022 at 15:02
If it's any comfort, Steve, I went down the HT/RT route (recommended in my case) and didn't find it too bad at all.

Make sure that you get a separate appointment with an oncologist to discuss RT; urologists have a tendency to recommend surgery because that's what they themselves do. It's important to get the balanced picture.

Best wishes,

Chris

User
Posted 03 Jan 2022 at 16:21

Hi Steve,

I did have the option of AS but it only lasted a couple of years and it was then about choosing a treatment. I went for surgery and nearly 2 years on all is currently well and no significant side effects. Have a look at my profile if you are interested in knowing more.

Good luck with your descision

User
Posted 03 Jan 2022 at 16:42

Thanks Chris and Mike. 

I think it is the after effects of the surgery that worries me. (I’m a big girls blouse when it comes to pain threshold 😂) 

my wife wants me to go down the surgery route as well and know that my gut feels it too but fingers crossed for the meeting on Wednesday to see what the surgeon says and his view and route he would like to take. 

I will keep updating results etc from Wednesday and let you know. 

just a question, from meeting with the surgeon after making a decision, did it take long to get the surgery done? Think I read that you have to do pelvic floor exercises for a week first? 

User
Posted 03 Jan 2022 at 17:25

Hi Steve I went down radiotherapy hormone therapy route 37 fractions last March found it tolerable same with hormone therapy mine was gleeson 9  PSA 24.9  last PSA 0.01 and feeling ok  10 months on good luck whatever way you go. gaz

User
Posted 03 Jan 2022 at 18:21

I am sorry you find yourself one of this group. My husband went for a check for similar reasons to you and we found out it was cancer on  Christmas eve 2010. He had radiotherapy and hormone treatment initially and several different treatments over the following years but we enjoyed several good years and did loads of things. Your wife will give good support and it is really important to have another pair of ears during consultations. I went to virtually every appointment with him and it was important for me too to feel involved in decisions and to help keep track of things.

Treatments are improving all the time and I hope that you have many symptom free years ahead of you.It can be  managed so well so that your life can continue as normally as possible.

Every good wish to you and your wife. X

User
Posted 03 Jan 2022 at 18:59

Thanks Gaz and Gilly. I’m sure Wednesday will give me more answers and then choose one. 

 

User
Posted 03 Jan 2022 at 19:22
As suggested by someone else above, you really need to see an oncologist as well as a surgeon - otherwise you are not really making an informed choice.

How long from decision to operation varies significantly around the country. We have a couple of new members here recently who had their op within 4-6 weeks of deciding - in other areas, there is a delay of 3 - 4 months. If you decide on surgery but there is a long delay, ask whether you can have hormone treatment in the meantime.

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

User
Posted 03 Jan 2022 at 19:38

Hi Steve,

This is such a difficult time getting your head around everything and making the decisions. You will definitely feel better when you have decided best route for you.

I’ve done all the research and organising for my husband and then we just discuss everything and make the decisions together.

My OH was in a very different situation to you, and surgery wasn’t really given as an option because it had spread to other areas as they thought (turned out to be just one lymph node) we ended up getting a private second opinion and my OH very recently had his surgery. He is quite a few years older than you but he really wanted to have surgery. It is really early days and everyone is different but so far he seems to be doing really well. In terms of pain, he had the pain relief needle in his back and then I kept him on paracetamol for about 4 days after coming home…but that was just precautionary. He hasn’t complained of being in pain at any point, slightly uncomfortable sometimes but that’s it.

You're doing the right thing speaking to everyone and finding out as much information as you can. We ultimately went with our gut and we’ve said we won’t have any regrets as we think that’s best for us at this point.

Best of luck to you and your wife with your decision.

User
Posted 03 Jan 2022 at 19:43

Thank you Lyn. That is something I have emailed and asked the support nurse today as well as I need to get both sides. 

will let you know what happens on Wednesday 

User
Posted 03 Jan 2022 at 21:15

Hi Steve,

Like you I also have a telephone appointment on 5th Jan to discuss choices. I had my oncologist appointment just before Christmas. The recommendation of the MDT was surgery and I am probably leaning towards that but I suppose there is no right or wrong decision when you are offered these choices. It's down to how you feel about it. I have heard from someone else under treatment in my area that the waiting time (back in November) for prostatectomy was three months, which is a bit concerning and Omicron isn't going to help matters.

I was told to start pelvic floor exercises at the time of diagnosis, although the didn't really start in earnest until just before Christmas. I couldn't discipline myself to do them regularly. However I heard about the Squeezy NHS App from a post I read on this forum (thank you who ever it was). I have found the App really helpful in keeping up with the exercises.

I know how you feel. It's such a lot to take in when it just comes as a bolt out of the blue.

Chris

User
Posted 04 Jan 2022 at 00:23

At your age, most men have surgery where this is an option because where the RT alternative is adopted, there is normally more years for the radiation to initiate other cancers that can happen in a minority of cases even many years later. In need, RT can and quite often is given as a follow up to treat cancer beyond where surgery can go, whereas surgery after RT is much more difficult and not all surgeons will attempt it. Surgery can result in temporary incontinence over varying periods and in very very few men permanent incontinence. Surgery can mean men receive more of an erection naturally over time, particularly if the nerve bundles are saved although there are other mechanical and chemical ways to help. With RT erections gradually become less so over time usually, but incontinence is not such a problem as with surgery. Hormone Therapy usually accompanies RT and this adds to side effects. Some men are affected more than others and it's a good idea to read up on treatments and potential side effects. I recommend down loading or obtaining a hard copy of the Tool Kit which covers this in greater depth. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

When PCa is detected at an early stage, some men defer radical treatment until monitoring indicates radical treatment is advisable. However, the longer a man relies on AS the risk of the cancer becoming more advanced increases and sometimes monitoring fails to determine the critical point. A man must consider what his consultants say but also timing and then make his decision on the options open to him.

Best of luck on your cancer journey.

 

 

Edited by member 04 Jan 2022 at 00:23  | Reason: to highlight link

Barry
User
Posted 04 Jan 2022 at 08:03
Just one thing others have missed, you have flow problems, RT may not fix those, RP will remove the constriction. May give you the opposite problem but it will definitely remove any constriction caused by your prostate!
User
Posted 04 Jan 2022 at 08:09

francij1 beat me to it. I think that is a very strong argument indeed. It was decisive in my case and boy, as I promised him, I think of my surgeon every time I pee (it used to hurt). At 51, you should overcome ED at a canter and UI passes for almost all (have you had an MRI to gauge your chances on the side effects? A really important step IMO)

User
Posted 04 Jan 2022 at 08:15

On pain, I was TERRIFIED of the op., and that was part of it, so I feel you. I bought a hernia support belt before but did not put it on for 2 days because the physio nurse had scoffed, hard. BOY was that a relief when I finally did: revolutionary. I had a big (ish: 2 inches?) scar: most have a tiny one under the navel. So YMMV but that essentially took pain out of the equation. The aftermath of major surgery is more general discomfort/shock than pain I found.

ADD I did NOT consider the catheter and bag a feature. It was the first taste of sleeping through the night and I soon got used to the day bag. A bit of basic hygiene at the tip and no discomfort at all. end ADD

Edited by member 04 Jan 2022 at 08:41  | Reason: typos

User
Posted 04 Jan 2022 at 13:25

Thank you everyone. Will update once I have the meeting with the urologist tomorrow but am taking up most peoples advice and speak to the oncologist as well so I have a balanced view. 

 

User
Posted 05 Jan 2022 at 10:36

Well the meeting is all done. Didn’t go as expected but surgery being lined up. Will be weeks and not months. 

Cancer is starting to breakthrough the capsule and now at T2/T3A stage. Surgery now decided but if they can't remove it all in the operation, then will need radiotherapy afterwards.  The biopsies were wrong in my initial meeting, it turns out it was 28/18. 

so although I am glad I have made my choice, still crapping myself at the thought of surgery but glad it is being sorted. Urologist has agreed that surgery would be the best option first and then they can treat anything after if anything left. 

Edited by member 05 Jan 2022 at 11:34  | Reason: Not specified

User
Posted 05 Jan 2022 at 12:25
Good. Always best to make a decision. I had surgery very similar to an RP in 2019 (my prostate cancer diagnostic MRI picked up that I had an unrelated kidney tumour, so I had my left kidney removed!) and didn't find it too bad at all. My first stay in hospital and, weird though it sounds, I found the whole experience rather enjoyable 🙂. Don't give pain a second thought: you'll be doped up to the eyeballs on intravenous morphine and you won't feel a thing - you'll be away with the fairies.

It does take quite a few months to recover from major abdominal surgery. Lots of internal muscles get cut and they take quite a while to heal. Just listen to what your body tells you, and when it hurts, STOP.

Very best wishes,

Chris

User
Posted 05 Jan 2022 at 12:58

Steve , get started on those pelvic floor exercises.

Thanks Chris

User
Posted 05 Jan 2022 at 13:05

Originally Posted by: Online Community Member

Steve , get started on those pelvic floor exercises.

Thanks Chris

yes am on it first thing tomorrow morning Chris. Someone said there is an app now to remind you to do them so will look that up 

User
Posted 05 Jan 2022 at 17:55

That's a big step forward Steve.

Good luck with your operation. 

Kev.

User
Posted 05 Jan 2022 at 17:59

Originally Posted by: Online Community Member

That's a big step forward Steve.

Good luck with your operation. 

Kev.

Thanks Kev 

User
Posted 07 Jan 2022 at 11:44

So finally it is coming round now. Pre Assessment this Monday followed by pelvic floor class and Prostatectomy is booked for Wednesday 26th Jan. 

Have to be honest to say im nervous but has to be done and then road to recovery :)

 

User
Posted 07 Jan 2022 at 15:21

Well done, Steve. 

Don't be nervous. I had my RALP two months ago and I'm still here!

Pain minimal. Discomfort moderate. You'll be fine. 

User
Posted 07 Jan 2022 at 17:40

Not something to look forward to Steve, but it is good news you have a very quick date for surgery. The situation is so dire in my area that you couldn't even be seen privately as quick as that. I have found out today that there are 23 prostectomy patients with the same Gleason score as me ahead of me in the NHS queue. They just stick you on Zoladex until your turn finally arrives, whenever that will be.

Keep up with the squeezy exercises in the meantime. Someone has advised me to start taking vitamin D and C. Good luck. Chris

User
Posted 07 Jan 2022 at 18:08

Blimey Chris! That is mad. 23 in the queue ahead of you 😢 

hope you get yours soon. Yes have downloaded the nhs Squeezy app and that constantly nags me so will be carrying on with them. 

not a bad idea taking vitamins either. May start that as well 

User
Posted 07 Jan 2022 at 18:17

There is a bit about vitamins on the NHS website.

https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-c/

Interesting to note vitamin C helps with wound healing

User
Posted 09 Jan 2022 at 10:23
Good lad Steve and welcome to the club! Hopefully things will be much easier for you now that you have made a decision and got a surgery date booked in. None of us want to be here but we've just got to keep on going and get through it. My OH was in a very similar position to you. 56, relatively low PSA (4.6), Gleason 7 (4 + 3) T2C. TBH we didn't even consider RT as he was certain he wanted the cancer cut out of him and wasn't keen on hormones etc for long periods of time. He had RARP on Dec 8 and is now recovering. The worst bit was the build up to the op! It's the not knowing and apprehension that was the worst for us. Once he had the op (which was nowhere near as bad as we thought it would be) we could just crack on with the recovery process and getting him better, good food, lots of rest, plenty of liquid etc. OH was given codeine tablets but didn't need them. Only took a few paracetamol. So try not to worry too much. I'm sure your wife will do a great job of taking care of you. Good luck with it all!
User
Posted 09 Jan 2022 at 13:46
Very few people require vitamin supplements unless your diet is vitamin-deficient. I really wouldn't bother!

Best wishes,

Chris

User
Posted 11 Jan 2022 at 16:24

So after another call from the hospital this afternoon, the surgery date is now moved again but actually 2 days earlier! 

So now Monday 24th January at 7am. Seems to be coming round a lot quicker than I thought.

Still doing the pelvic floor exercises :)

User
Posted 12 Jan 2022 at 15:48

All the best Steve

User
Posted 12 Jan 2022 at 16:03
VitaminD supplements in a UK winter are a must!
User
Posted 19 Jan 2022 at 12:20

Hi All again 

As i'm getting prepared to go in for surgery on Monday next week, does anyone know what are the best things to take into hospital? Apart from my mobile phone and medication, been told to leave everything at home. 

I thought I saw a post from Lyn somewhere on here where she listed out all the things I need as soon as I leave hospital but could be wrong. Would be good to make sure I have what I need. 

 

 

User
Posted 19 Jan 2022 at 14:03
User
Posted 20 Jan 2022 at 18:33
Hi Steve,

I was the same as you, worried more about the actual surgery than the cancer itself. I am 60 and had never spent a night in hospital. I had my RARP last October, went in 715am...well pushed in by OH, on a Tuesay morning. Saw the the anethatist briefly then the surgeon then down to theatre. I went out like a light on the pre-med without waiting for the big one lol. Woke up what felt like 10 seconds later back in the ward. Fortuantely the main hospital was full so they sent me to the Nuffield with a private room, television shower etc. Uncomfortable few hours when first coming round then the pain killers kick in. Watch the opiates and avoid if you can as they bung you right up! Anyway i was back home the following evening watching television in my own house.

The operation itself is a breeze, you wont know anything about it. The actheter is annoying more than anything but again not too bad and only in for two weeks hopefully. I went out and about with mine sloshing around my leg, its no big deal. Can get a bit sore towards the end but you can get some topical cream from the chemist if you need it. Catheter removed and no need for pads, keep up the pelvic floor exercises! Any questions feel free to ask.

User
Posted 20 Jan 2022 at 22:02

Hi Steve,

As I knew already my husband was going to be in for 2 nights, I sent him in with prune juice (for constipation), cranberry juice (for infection) & peppermint tea bags (to release any gas). Although he was just on paracetamol coming home, I kept it up for about 4 days whether he felt he needed it or not….also the movicol he was prescribed for constipation, he had 2 sachets twice a day until they were gone. I was expecting that to be really difficult for him but preparing for the worst seemed to help it not be too bad.

He woke up in recovery from the op asking what time he was going down 😂😂 he ended up with the catheter in for 4 weeks (just took out yesterday) and although he’d rather not have had it he never really had any pain or discomfort from it (I did purchase instilagel just in case)….just often the feeling he wanted to pee himself. He did rest when he came home but he felt much better in himself than he ever expected. He’s took it all in his stride and not over worried (I’m incredibly proud of him❤️). Wishing you all the very best for your op and a very speedy recovery 😊

User
Posted 21 Jan 2022 at 08:51
Very best wishes for your surgery, Steve. You've come a long way since your initial post! Perhaps it would be as well to change the title of this thread now?

All the best for Monday,

Chris

User
Posted 21 Jan 2022 at 12:13

Hello Steve,

I had my Op at the medway Maritime Hospital last march after Eastbourne cancelled, glad i went

to medway for the surgery it was nearer to home and my op went really well and just kept in for extra

day because Blood Pressure being a bit low , the staff were fantastic and cannot fault treatment.

Prior to surgery during lockdown to say i was scared of the op would be an understatement 

Nether had surgery before apart from a vasectomy  and can honestly say the vasectomy was far more

painful!  more of discomfort for me post surgery with trapped gas which is common.

I took a some toiletries in wash bag and night gown and phone headphones with a good youtube music playlist.

I know what you are going through try not worry it will over before you know it

Best Wishes 

John

User
Posted 21 Jan 2022 at 13:09

Thanks John

medway is where I am getting mine done so that has put my mind at rest. 

think I’m all ready for Monday now finally and get this recovery on the go 

 
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