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Post Diagnosis - The Next Chapter

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User

Posted 22 Apr 2015 at 17:45

My first post ended with me awaiting the results of the Ten-Plate Biopsy I had in October last year.

I saw my Consultant in November following quite a long wait and was given the news that 4 of the cores taken were cancerous. It was described as low volume and lower grade disease and the Gleason was 3 + 4 . As a result it was suggested I continue on surveillance, with an appointment arranged for March this year, following a PSA.

The March PSA was 15, the highest it's been, and as a result, I was asked to have an MRI scan. Following this, an appointment was arranged for this month to discuss the results of that. At that meeting I was told that although the MRI didn't reveal anything else, the Consultant was concerned that because my prostate was quite large, the MRI might not have picked up everything and perhaps treatment should be considered. However, before any decision, he wanted his team to have a look at the MRI which they hadn't yet had a chance to.I was given 2 options to consider, if we went down that road, depending on the views of his team - Removal, or Hormone Therapy plus Radiotherapy.

I should receive a phone call tomorrow from the Consultant to discuss the outcome of the meeting with his team. Meanwhile, I have been trying to make up my mind which route should be taken should I be asked.

I'm sure many of you have been in a similar situation and I realise that the decision is mine alone, following the Consultant's advice and views. It's a bit scary waiting, as I'm sure, there again, many of you have experienced.

I will report back once I know what's happening. I feel quite ok about the future, especially having read so many of your stories, and it is so good to have this site to share my story and receive the support that comes from it.

User

Posted 28 Sep 2015 at 15:25

Thank You Pablo. Sorry to read that you've been having side effect problems recently. Sincerely hope that that is resolved very soon.

Thank You Sandra. Don't worry about internet connections - just have a great holiday.

Thank You too Chris. I'm a bit tender for PFE's at the moment but will start them up as soon as I can. As to staying dry, if it gets no worse than it is at the moment and then improves, I'm on a winner.

User

Posted 14 May 2015 at 10:31

Hi. Cobbles,

I had my prostate removed 6 weeks ago by Laparoscopic surgery. My situation was different from yours in as much as my scan showed that the cancer on one side looked aggressive and I was advised that all indications were that it was breaking out of the capsule. I spoke to the oncologist but didn't think RT felt right for me but to be honest I had made my mind up for surgery before seeing her. The surgeon I saw offered open surgery but I wanted keyhole so he referred me to another surgeon that held things up a little.

Having never had an operation in my life the fear of this was what I found the most daunting. I knew I could cope with the aftermath of ED and incontinence but fear of surgery played on my mind.

I really had no need to be overly concerned. I was supported really well. I went to sleep, woke up and it was done. I had some bad but not unbearable pain for a couple of days that was eased with strong analgesia. I was allowed home after 2 days only needing paracetamol. My scars have all but cleared. The catheter was a bother rather than anything else and I was pleased to have it out. I have some incontinence but this is getting better all the time and I am confident this will not be a major problem further down the line. No action in the erection deparment but I know this can take a good while to return, if ever. I discussed this prior to the op and after 40 years together she didn't see it as a major problem ( I think she was quietly quite pleased).I am now waiting for my first follow up. Fingers crossed surgery has sorted out my problem.

I wish you well with whatever decision you make and best wishes for the future.

Regards,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 23 Apr 2015 at 18:19

If you cannot download the toolkit, you can order it by post.

Saves on a lot of printer ink too!

Alison

User

Posted 14 May 2015 at 11:34

Thank You Paul,

Your post is very reassuring and much appreciated.
I'll let you know what is to happen.

I wish you well on your continuing recovery.

Regards
Cobbles

User

Posted 13 Aug 2015 at 15:40

Just to say I too had op by Da Vinci back in 2012 and I am still here!

Wishing you all the best.

User

Posted 13 Aug 2015 at 16:06

Thank You rivertweed, that's good to know - I'm planning on sticking around too.
Have just read your profile and appears similar to mine. I note the after op effects - I've been warned of course, so we'll see.
Que Sera.
Thanks again,
Cobbles

User

Posted 13 Aug 2015 at 17:30

Hi Cobbles

Looks like you are the next contestant to follow me. I gained huge comfort and knowledge from following my direct predecessor Stuart (TraleeTrish) and ChrisJ, Raiden and other recent participants. I am just over a month ahead of you with a similar history etc. Knowledge is power and this forum does what it says on the tin. Online Community Support. We are all behind you!

Dick

User

Posted 12 Sep 2015 at 15:13

Well here we are, it's September 12th and my big op, courtesy of DaVinci, is taking place this coming Tuesday 15th. I guess the reality of it all is well and truly with me now and I expect those of you who have already experienced this op, along with the OH's too, you felt much the same emotions, feelings, apprehension etc. as I do now.

However thanks to you all that have supported , informed, and advised me so far, who's own posts and stories I have read, this experience is going to be a whole lot easier for me now, than if I'd remained ignorant of this amazing site and bunch of people on it.

So to you all, "A Big Thank You" and when home again, I'll be back here to let you know how it all went and also to offer my support when and where I can.

Cobbles

User

Posted 12 Sep 2015 at 15:37

Hi Cobbles ,
Thank-you for YOUR support over the weeks ! I know exactly how you are feeling as you are well aware . You're doing a better job than I was for sure mate . A couple of sleepless nights maybe , but as I said before on the day it goes like clockwork ( well it did for me ). Its a big operation and you are at the front of the queue , and may be the surgeons only patient that day . You wont have time to worry and will wake up with a pretty lady holding your hand caring for you . All the very best and keep in touch .
Chris

User

Posted 12 Sep 2015 at 19:42

Good evening Cobbles

All the very best this week I'm absolutely sure all will be well. It's all quite normal to be feeling apprehensive, its just under a year ago that I was in a very similar position to you having to make the choice between the operation or the alternatives. I had no problem with my decision and have never looked back. Sit back, relax and leave the professionals to look after you, take your time getting up and about afterwards, enjoy a bit of pampering I'm sure you deserve it.

User

Posted 12 Sep 2015 at 21:18

Hi Cobbles

Having been where you are now I know exactly how you will be feeling.

I wish you all the very best on Tuesday.

Be strong - you can do it!

I will look out to see how you are getting on.

Kind regards.

User

Posted 13 Sep 2015 at 10:36

Cobbles,

I had my DV op at the end of April earlier this year.

I consider my self lucky that it was an option available to me.

No incontinence issues at all from the catheter removal.

Managed to spare the nerves on one side, Ed is an issue but to be expected, making progress after some regression!

Sincerely wishing you all the very best and look forward to hearing that all went well etc

Pablo

User

Posted 13 Sep 2015 at 11:02

Nearly six months since my op and I can say that there is a good quality of life after. I have no real problems with incontinence except the occasional, rare little leak. I am more or less back to how I was pre op. I am due my second PSA next week, the first being unrecordable.

All the best for Tuesday.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 13 Sep 2015 at 11:20

Hi Pablo and Paul

Your reassuring posts give me extra and welcome confidence so "Thank You".

I won't get over confident though !

Good luck with the next PSA test Paul.

Thank You both again. I'll be back with the post op news.

Cobbles

User

Posted 13 Sep 2015 at 14:33

Cobbles

All the very best for Tuesday, you will be in my thoughts.

User

Posted 13 Sep 2015 at 15:22

Hello again Mo, Thank You very much.

You were one of the first to respond to me when I started my posts and I've always been grateful for the support and advice you have given me.

Thanks again and I'll keep in touch.

Cobbles xx

User

Posted 14 Sep 2015 at 20:38

Well by this time tomorrow it should all be over and you will be on the road to recovery. I hope its not a long one and most importantly it all goes well for you. I wish the you all the very best.

User

Posted 21 Sep 2015 at 17:46

Well done Cobbles!

You are on the road to recovery - wishing you all the best.

Keep strong!

User

Posted 21 Sep 2015 at 17:59

Thank you rivertweed and for all your earlier support too.
I will keep strong.

User

Posted 21 Sep 2015 at 17:59

Hi Cobbles

Glad to hear that you're back home and upbeat and positive.

Best wishes for a speedy recovery

Arthur

User

Posted 21 Sep 2015 at 18:28

We all knew you would do it tough-guy . Easy isn't it ........ ?? Well very well done and glad to hear you seem to be doing really really well , and you have 22 years on me ! I remember clearly big catheter moments whilst having a No2 in hospital. Leaks and blood etc everywhere . Quite frightening yeh . All the best and a few of us have very fresh memories , so ask away .
Chris

User

Posted 21 Sep 2015 at 18:39

Well done Cobbles and welcome home.

Wishing you a speedy recovery from the intrusions of Mr DaVinci

We can't control the winds - but we can adjust our sails

User

Posted 21 Sep 2015 at 18:55

Pleased to read this Cobbles. My friend had this op last Thursday, lasted 4.5 hours and sent home the next day, pretty horrific in my opinion as it took around two hours to get home.

Hoping he does as well as you seem to be though.

All the best

Allison

User

Posted 21 Sep 2015 at 19:18

Thank You Superwoman Sandra xx

User

Posted 21 Sep 2015 at 20:44

Cobbles

bravo!! you are through the first hurdle and now on the road to recovery.

So pleased to hear everything went so well.

keep in touch to let us know how your recovery is going.

User

Posted 21 Sep 2015 at 23:06

Cobbles,

All sounding good. Re the catheter leakage during bowel movements. I was advised to put my feet on a small stool thus raising my knees up. It didn't totally alleviate it but it did seem to make it easier and caused less bowel straining.

Hope all continues to go well.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 22 Sep 2015 at 11:00

Cobbles,

How good to hear about the next step in your journey, thanks for sharing! It's a cakewalk really!

Re taking a kip, just listen to your body, I'm nearly 5 months post DV op and still having a kip in the afternoons!

Pablo

User

Posted 23 Sep 2015 at 07:23

Mr Da Vinci has a lot to answer for when you are feeling a bit sore and fed up in the first few days but once the original plumbing is restored you will move on in leaps and bounds. Gentle excercise, loads of naps and snoozes, the right sort of food and hopefully you will be feeling more like your old self soon. So pleased it all went well for you. I for one, took huge comfort from other people's posts on here about their experiences and tips for dealing with the minor problems that come up on the road to recovery. My fingers are crossed for you!

User

Posted 28 Sep 2015 at 13:02

Thanks for the update Cobbles!

Wishing you all the best for the 8th October and hope your recovery is smooth and full!

User

Posted 28 Sep 2015 at 13:13

Glad all seems to be progressing well Cobbles.

I'll wish you good luck now for the 8th October as I'll be on holiday and may not be able to access internet.

We can't control the winds - but we can adjust our sails

User

Posted 28 Sep 2015 at 14:45

Cobbles
Fantastic news for you and us . Yes the catheter coming out is a great relief if a bit queasy . I think people tend to be either virtually dry straight away or leak quite a bit to start with which soon improves . Make sure you do the PFE's . I simply do them whenever the newspaper is in front of me -- either reading or doing the cryptic . So I never forget.
Good luck on the 8th -- that's come round quickly . Best wishes
Chris

User

Posted 28 Sep 2015 at 15:53

It all sounds very positive, long may it continue

Best wishes, Arthur

User

Posted 28 Sep 2015 at 18:39

Glad to hear the catheter is out at last. I remember that day for me back in 2012. I didn't wear the right kind of pants - loose boxers didn't hold the pad in enough. I poured like a tap and the wet pad kept falling down my leg - all very embarrassing in front of all the others in the waiting room! However, I have a good laugh about this now.

Wishing you all the best on 8 October.

User

Posted 28 Sep 2015 at 23:17

It is wonderful when that catheter is removed although a little scary. I was peeing like a trumpton fire engine out of control at first but things have settled down now and some days I don't pad up at all. Hope all goes well with your results. I am just awaiting the results of my second post op PSA. It's a little worrying but I can live with that.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 29 Sep 2015 at 09:29

Arthur, rivertweed and Paul,
Thank you all very much.
Yeh what a relief to be rid of the catheter ! An interesting day yesterday, to use Dick B's expression, there were lots of "Ooops" and changing of pads throughout the day, I did manage a walk into town for a coffee and sat outside in the beautiful sunshine though and remained reasonably dry until I got home .A bit of pain every so often when peeing but I gather that's normal and fortunately hasn't happened much. Although sleep was interrupted a few times during the night, I woke each time feeling I needed to pee - which was welcome, rather than it happening without warning ! Therefore I got to the loo before the pee got to the pad, so I remained dry in that respect all night. We'll see what today brings.

Thanks again all.

User

Posted 29 Sep 2015 at 09:31

PS Sorry Paul I meant to say Good Luck with the PSA results. Fingers crossed !

User

Posted 29 Sep 2015 at 14:58

Hi Cobbles

Catheter gone pads to the rescue!

The leaks amd accidental spurts can go on for some time. Knowing where there are loos if you are on a journey or just a short trip out can be a godsend. The majority of the pads hold a huge amount of fluid without leakage, even one of Paul's trumpton fire engine ones should be contained!

Any transition from prone to upright, coughing, sneezing ,laughing or passing wind can set the spurts off.

PFEs don't help some folk, to do any good at all they have to be done properly and regularly.

Good luck at your review I am also going to be on the road so will only read how you get on a few days later.

Xxx

Show Most Thanked Posts

User

Posted 23 Apr 2015 at 08:54

Cobbles

Hi again, the PSA rise to 15 is not good and AS may have run its course for you.

As you say the decision is really hard and only one you can make. If you have a partner you might want to talk it through with them as treatments have varying consequences. I am not saying for one second it is their choice or decision as that can only be yours.

What you should consider are your priorities and how you will manage any side effects from treatment or the possible consequences of continuing on AS with a rising PSA.

Make sure you take notes or if possible record the consultation so you can check back on it later. Take your time to consider everything. Talk to other Men or their partners on here who have had a similar choice and decision to make.

When you do make a decision go with it no turning back and with no option for regrets.

I wish you all the very best

User

Posted 23 Apr 2015 at 09:12

Thank You Mo so much for your encouragement and wise advice. I will take all of that on board before coming to my decision .I'll be back when I've heard from the Consultant. Thank you again.
Cobbles

User

Posted 23 Apr 2015 at 14:09

Hi Cobbles,

Sorry that you have more decisions to make, but glad that you still have options more than 1. At 70 you are still a youngster and in the curable camp.

Have you downloaded the toolkit from this site?

When you consider the choice of treatment offered, you may wish to look at and ask about other options that have not been offered by your NHS Trust which may be available to you at another local NHST. For example I was not offered DaVinci surgery by my NHS trust but asked and eventually had DaVinci at a neighbouring NHST. I was only told about this as a possibility by someone who had been in a similar position.

Also bear in mind that the side effects so often talked about are all possibilities, not guaranteed, hopefully the most significant potential side effect is life? There has been some talk about priorities when making the decision you are being asked to make shortly.

The general order seems to be:
1. Get it out and give me life
2. Continence if possible
3. Preservation of some EF if possible with nerve sparing if possible

This list mostly applies to a choice for surgery.

Another factor that you may wish to consider is your expected longevity. No way to fluffy this next bit up, so apologies if this is blunt, but if your projected longevity from family history is around 75, you may think that surgery with the greater risk of side effects is not for you? You may think HT and RT will satisfy your needs? Some men decide that they will do nothing but take a shorter life expectancy with no consequences or some effects.

When you have any meetings it is always useful to have an extra set of ears with you, you may miss something said immediately following something which comes as a bit of a shock?

A pen and a notebook are useful. Once you have read all about the options you have been given and any others you may wish to consider and ask about you can go in with a list of questions to work your way through to make are you cover everything that is on your mind.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Apr 2015 at 17:05

Thank you Dave for all of the very welcome, valuable, advice and information you have passed on .

Re the Toolkit, I can't seem to find how to download it - all I can manage is a page where you order it and have it posted. Am I missing something ?

It is now late afternoon and so far.........................no phone call from the Consultant !
I have been in touch with the hospital and whilst they said they'd try to reach him and get him to call me today, they also said it may now have to be tomorrow.

I'll be back when it's happened.

Thanks Again
Cobbles

User

Posted 23 Apr 2015 at 17:41

Cobbles,

I am a bit of a computer numpty, hopefully someone better cranially equipped will post a link to a downloadable toolkit?

Without being dramatic, it is not a matter of minutes or hours for you, but I would call people and not wait for calls. If you become a PITA then you may get quicker responses as people are just glad to get you off their backs?

JAT

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Apr 2015 at 18:00

Originally Posted by: Online Community Member

Cobbles,

I am a bit of a computer numpty, hopefully someone better cranially equipped will post a link to a downloadable toolkit?

JAT

dave

I've just had a look regarding downloading a 'Tool Kit' Dave .... I will also admit I'm not the sharpest knife in the drawer....

This site is not easy to navigate in my opinion....... I can't for the life of me see where you can download a 'Tool Kit ' either..

Hope someone can can provide a link for you Cobbles

User

Posted 23 Apr 2015 at 18:06

Hi Luther,

My memory isn't,what isn't it, well whatever it isn't it's not what it was, but I thought that I had seen people refer to a downloadable version here somewhere? But not 100%. He may have to order one inscribed on tablets of stone?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Apr 2015 at 18:12

Originally Posted by: Online Community Member

Hi Luther,

dave

Dave, I'm sure I've seen an option to download this information in the past.....

PS..... My memory is not so good these days either..... Did I just say that?.... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User

Posted 23 Apr 2015 at 18:19

If you cannot download the toolkit, you can order it by post.

Saves on a lot of printer ink too!

Alison

User

Posted 23 Apr 2015 at 18:39

You can find the publications by starting on the Home Page, click on “Prostate Information” in the top menu then on the next page click on “Our publications” then on the next page near the top RHS, click on “see all publications”. Scroll through the pages to see what you may need then read or print off a copy.

This will show you how the system is set up. Alternatively, use the link below to get directly to the publications list.

http://prostatecanceruk.org/prostate-information/our-publications/publications

I see your options may be a prostatectomy or Hormone Treatment with Radiotherapy.

See my profile – I am now coming up to starting my 15th year since I had HT and RT. I didn’t have the option of a prostatectomy. I don’t regret not having the option even though I have had two bio chemical relapses (recurrences of the cancer) over the years.

I hope this is useful for you.

Alan

Edited by member 23 Apr 2015 at 18:40 | Reason: Not specified

User

Posted 27 Apr 2015 at 20:00

Very useful, thank you Alan.

User

Posted 27 Apr 2015 at 20:09

Well I have at last received a call today, following a chase at the end of last week and again this morning.
The news received was that the meeting of my consultant's team last Wednesday, the result of which I've been chasing, did not actually happen, as the radiologist was unable to attend. My weekend might have been easier had I known that last week but.................I know it now. It will now take place this Wednesday.
I'll be back when I know the result.

User

Posted 27 Apr 2015 at 20:40

Cobbles

it is so frustrating when this happens and regrettably it can and does. You have to be very proactiive so you chasing things up is good.

It is the hardest thing to just sit and wait and not have control over that.

I wish you all the very best

User

Posted 29 Apr 2015 at 07:52

Thank you again Mo. Hoping to have news today or tomorrow.

Cobbles

User

Posted 06 May 2015 at 09:05

Well at long last, I did get the phone call from my Consultant who said that his team confirmed that the MRI didn't show anything that we didn't already know. There is no clear aggressive disease, but there is intermediary aggressiveness, termed by him as "Lower Risk". It was felt that although continuation of Active Surveillance is reasonable, consideration of Hormone Therapy plus Radiotherapy, or alternatively, Removal, was in his view the best way forward. I felt during the discussion that I was being steered towards the Therapy option but the more I think about it,, I am looking towards Removal. On asking him about that, he said it would be keyhole rather than open surgery and I would be sent to a hospital out of our area where they have the DaVinci machine. I was left to consider everything, I'm having another PSA, hopefully this week, with a follow up clinic to discuss the results and I think at that meeting I'll then decide what to do. If anyone has any comments on my situation, I'll gratefully receive them as I am grateful for those already received from some of you. I fully understand that it is my decision to make.

Edited by member 06 May 2015 at 09:06 | Reason: Not specified

User

Posted 06 May 2015 at 11:46

Cobbles

Hi thank goodness they got back to you albeit late.

Your initial thinking of "I want it out" is very common and in my opinion a natural first thought.

However there are a lot of things to consider before making your decision you will need to think what your priorities are as the different treatments can and do have an impact on them. Most men look at three or four key issues... Living, urinary continence, erectile function and recovery time/impact on work or commitments. There are some others but these seem to be the commonest ones.

I am not able to advise you on any particular course of action but there are many profiles you can look at for davinci surgery, RT, HT (or both) and AS ,several will post on your thread or have done do previously. My post will nudge you back up the order on the forum so that you get a better chance of them pointing you in their direction.

The options all come with side effects of varying degrees, differing recovery times, more frequent hospital visits etc. Etc.

If you have managed to get the toolkit it will give you a good explanation of each option.

Going outside of your own area to get robotic surgery is also very common as not every health authority has the equipment. I know of several men who have done this, it has not been that much of an inconvenience or issue for them.

I wish you all the best, this is a big decision so take sufficient time to ponder everything but not so much that you begin to doubt yourself.

Once your decision is made go for it, no looking back.

User

Posted 06 May 2015 at 12:50

Cobbles

I wouldn't want to steer you in any direction, but like Dave, I have no regrets re removal. I am close to being fully continent 13 months post op, and although the old man is only just beginning to react to Viagra, I am enjoying life more than ever.

Make sure you read everything you can to make sure the decision is right for you.

Paul

Stay Calm And Carry On.

User

Posted 06 May 2015 at 17:13

My thanks to you both, Mo and Paul.
I will try and gather together all the info I can before "Decision Day" as well as look at the profiles of guys who have been through the options I have available to me, as you suggested Mo. I do have all the necessary printed info now and will read carefully Paul. Have heard from my Consultant's secretary this afternoon who's calling back to arrange a date for my next appointment.

User

Posted 12 May 2015 at 08:41

I now have a date for my follow up appointment ( May 21st ) to discuss the result of my latest PSA and then make a decision about my options. I am feeling that I will go down the DaVinci road rather than opt for Hormone therapy plus Radiotherapy. I've been told that the DaVinci would take place at Eastbourne General which is outside of my area, about 40 miles away, which I'm fine with. I would be interested to know if any of you have had DaVinci at Eastbourne General and how it went for you there ?

User

Posted 12 May 2015 at 08:53

Cobbles

you will probably go through this over and over in your head until May 21st, so every time you think of a question you might want to ask or just something you are not sure of write it down. If you have someone to go with you to that consultation meeting who can prompt you if necessary that would be good or you could consider asking the consultant if you can record the conversation so you can play it back to yourself if necessary. It is a big decision so you want to be confident that you have got it right in your own mind.

As far as someome having surgery at Eastbourne is concerned I am afraid I can't help you there but the Da Vinci machine is robotic and it pretty much does what it is programmed or guided to do. Maybe one or two of the men already responding to you can share their experience of the procedure if that might help.

all the very best

User

Posted 12 May 2015 at 09:02

Hi Cobbles and best wishes on your decision ! This is almost an Identical situation to mine in every way , if you read my post " Help any advice welcome " by Chris J . Im confused too but as you said this site is wonderful and by slowly reading through all the posts it has given me a lot of hope for the future decision

User

Posted 14 May 2015 at 09:30

Thank you again Mo for your sound and valuable advice and support as always. I am fully aware that the decision I make is a big one. I have spent a lot of time recently gathering all the info together that I can, including reading the experiences of others on this wonderful site. The reason I'm favouring DaVinci is because - of the two options I have, it seems to me that the hormone therapy plus radio therapy are going to take over my life considerably more with many visits to hospitals etc. and then of course there are the possible and likely side effects to go with that. Whereas with DaVinci - which I know will also provide side and after effects - it seems to me that if all goes well, I will have a bit more freedom to get on with the rest of my life. I am lucky to be a fit and ,I'm told by my Consultant, "young" 70 year old - but 70 is 70 and therefore I want to try and make the most of however many years are left. I am also aware that being an "older" guy there is more chance of continence problems following an op and I will keep that in mind. Whatever happens next Thursday at the meeting with my Consultant, I will continue to try and weigh up all the pros and cons of everything before finally deciding. I will have someone with me so I won't be alone.

To be continued next week.

Thank You Again

Cobbles ( a real name variation by a very young goddaughter which became a permanent nickname )

User

Posted 14 May 2015 at 09:31

Thank you Chris, I'll be sending you a PM.

User

Posted 14 May 2015 at 10:31

Hi. Cobbles,

Having never had an operation in my life the fear of this was what I found the most daunting. I knew I could cope with the aftermath of ED and incontinence but fear of surgery played on my mind.

I wish you well with whatever decision you make and best wishes for the future.

Regards,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 14 May 2015 at 11:34

Thank You Paul,

Your post is very reassuring and much appreciated.
I'll let you know what is to happen.

I wish you well on your continuing recovery.

Regards
Cobbles

User

Posted 14 May 2015 at 21:00

I am 71 years old and last July I was diagnosed with Prostate cancer following a scan and a biopsy. I was given all the options and discussed it with a number of urology experts. Their advice was to chose the specialist first and then follow his advice and that's what did. I was determined to get the cancer out of my body before it spread and went for the traditional operation rather than the robotic method. I had the operation in September and everything went well.I hated the 7 days I had the catheter and being incontinent for about 6 months. I have now improved and only have problems when lifting or coughing or sneezing.In the meantime my cousin has passed away because it was not diagnosed early enough so we are all lucky to get it diagnosed and have the option of treatment. very lucky indeed.. So my message and advice is "Get it right out of your body asap" I hope this helps you

User

Posted 15 May 2015 at 18:02

Thank You Raymond.
It certainly does help.

User

Posted 26 May 2015 at 18:08

I have, since last posting, been back for the meeting with my Consultant to discuss the latest PSA and what action is to be taken.

The PSA was 15, the same as last time, and of the options I had, I have chosen to go ahead with Robot Assisted Laparoscopic Prostatectomy.

The wheels are now in motion and so I now await the date for this to be carried out.

I thought long and hard about my options and now I've decided which path to take, feel positive about it.

I'll be back when I know more.

Cobbles

User

Posted 26 May 2015 at 18:38

Good luck!!

That was my choice and have no regrets. Apart from continuing ED, which is improving, and being nearly dry, my life is much as usual. 2 golf trophies won over 4 days in May as well, so can't be doing too badly!

Keep us posted.

Paul

Stay Calm And Carry On.

User

Posted 26 May 2015 at 22:57

Hello Cobbles,

Also my choice, and I have no regrets. Dry except when very tired but still able to control it. EF is good and improving 2 years on.

Now is the time to plan your hospital bag contents, with all the kit and bits and bobs you may need will welcome during and after your stay.

It's been a while since I was in but I do remember briefs/pants instead of my usual attire boxer shorts. Maybe consider pads for your journey home in case the hospital do not give you enough? Some give loads, others 1 or 2. Baggy tracksuit bottoms for the catheter and bag? Find out from your Local NHS Trust if they will provide pads for when you get home. Will a nurse call on you? The follow up care from a nurse is somewhat haphazard as far as I am aware, I had no support, others have had brilliant support. PAYG mobile for use when you are confined, not an expensive smart phone, an option?

Start your PFE s now of you have not already. Did not work for me, but seems to work for the majority. Any weight loss or increase in fitness apparently helps with the robotic option, I am told.

atb to you and your support network.

dave

PS - if you do not already play golf, start, you should do well if SF2 is anything to go by! ;-)

Edited by member 26 May 2015 at 22:58 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 27 May 2015 at 11:23

Hi Cobbles,

daVinci surgery was also my choice...

Like the previous posters ( Dave and Paul ) I also have no regrets...

My recovery from surgery was very quick with no complications.

My histology report approx 8 weeks post op was very encouraging, so I knew quickly the full extent of the tumour(s) and had a pathological staging to confirm the findings.

A return to full continence for me is going rather slower than I had hoped for despite all the PFE's I did before and am still doing after surgery. It's 11 months post op for me now and very slowly my continence is improving. I have suddenly found most days I can get by on one pad even when walking quite a few miles mornings and afternoons across rough fields with the dogs, so I'm happy with that.

ED for me is improving also ( I had 50% nerve sparing ) but I still need to use Cialis or /and vacuum pump at present.

Wishing you all best for your forthcoming surgery and for a successful outcome.

Luther

User

Posted 27 May 2015 at 12:49

Cobbles, on page 10 of the publications page there is something called The Surgery Support Pack.

"Quote: These packs will help men prepare for surgery, and any problems leaking urine after their catheter is removed. It includes information about the operation, what side effects to expect and how to cope with them, as well as a supply of male incontinence pads for initial containment, disposable sanitary bags and cleansing wipes. Men can order their own pack by speaking to a Specialist Nurse on our confidential Helpline."

Before we opted for Brachytherapy and I was browsing the publications section I came across this on the list and ticked the box. It was very useful to have. I was surprised that it was free of charge, including P&P so I did, in fact, send a donation for all the publications as they are brilliant, but they were free

Anyway, This pack would give you different samples to try. There is even a little storage bag to put a supply in to take out.
Hope that helps
Good luck with the op and the aftermath.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 27 May 2015 at 16:16

Useful info from Sandra, I didn't know that.

Forgot to mention that the tracksuits pants need to be larger than you are used to as the abdomen is inflated with gas for the operation, and it takes a while to go down.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 28 May 2015 at 14:33

Thank You Paul. That's very encouraging to know.

"Not doing badly" ? Pretty Good, I'd say - keep up the good work.

All the very best for your continuing recovery.

Cobbles

User

Posted 28 May 2015 at 14:42

My Thanks to you too Dave for another encouraging post and I will certainly take note of your advice and tips.

I have started PFE's - when I remember !

All the very best to you too.

Cobbles

User

Posted 28 May 2015 at 14:51

Thank You Luther for your encouraging post too. It seems when thinking about "Incontinence" that everyone experiences it in different ways and for different lengths of time. I'll just have to deal with whatever happens -the same with ED.I will just be so pleased to have this op and then deal with whatever comes my way.

With very best wishes to you Luther and your continued recovery.

Cobbles

User

Posted 28 May 2015 at 15:09

Thank you so much Sandra for your advice and good wishes too. I was very lucky at my last Hospital appointment because the nurse who also attended, once she knew what my decision was, gave me with one of the packs you mention. I was very impressed and will donate to this marvellous charity in appreciation for providing such a helpful and informative website, that has also provided me with the encouragement and advice from you guys that have shown an interest and contributed to my journey, let alone all the others in our Community that you have also supported. I'm very grateful to you all and hope that with my new experience of this "Uninvited Intruder", I too can help and support others in the way that you all have.

Thank You Again

Cobbles

User

Posted 28 May 2015 at 15:15

Following posting the above, I have just received a phone call from the Bladder and Bowel Clinic. I have an appointment to see them on Tuesday, June 9th.
The new journey has started.
Cobbles

User

Posted 28 May 2015 at 16:47

Cobbles , Thank you for supporting me recently . Have you actually had the operation date ? I think we might be in together ??
I can only hope that your journey is brilliant albeit tough maybe . As you say we can only deal with one day at a time now to be honest , and make the most of it . And we will , and keep in touch , and get better ! #Chris

User

Posted 30 May 2015 at 17:27

Thank You Chris. Sorry for the delay in responding to you. My op is supposed to happen in September, so you'll be well and truly through yours and well on the way to recovery by then. I did ask if I could delay mine till then and they were fine about it. I will keep in touch. Thanks again and all the very best with yours next month. Cobbles

User

Posted 13 Aug 2015 at 14:25

I've not been here for a while as I've tried to put operations etc. to the back of my mind whilst making the most of the Summer (?)
I now know that my DaVInci operation is to be carried out on September 15th. I've tried to be good regarding the PF exercises in the meantime, although I have to admit that I do sometimes forget to do them as often as I should. I'm trying to improve on that. Whilst apprehensive about the whole thing, I have no regrets making the decision to go ahead with this option and am trying to keep calm about it. I know that should I need it, you good people are always out there to give marvellous support, as you've done for so many before.
I'll let you know how it all goes. Cobbles

User

Posted 13 Aug 2015 at 14:42

Cobbles , so pleased to hear from you . PLEASE stay in touch with us . Im glad you are confident and that your mind is made up . You will be fine . You've had loads of time to do your PFE so that should stand you in good stead honestly .
All the very best ( although its a while yet )
Chris and Elaine x

User

Posted 13 Aug 2015 at 15:39

Thank You Chris and Elaine. I will stay in touch and keep you informed.
Meanwhile, Enjoy and have a great holiday.
Cobbles

User

Posted 13 Aug 2015 at 15:40

Just to say I too had op by Da Vinci back in 2012 and I am still here!

Wishing you all the best.

User

Posted 13 Aug 2015 at 16:06

User

Posted 13 Aug 2015 at 17:30

Hi Cobbles

Dick

User

Posted 13 Aug 2015 at 18:08

Hi Dick

Thank you for your post. Indeed it does seem that we have a similar history and I will definitely gain all the knowledge I can from yourself and the others you mention. I've had a quick look at yours - the one after your op and journey home was brilliant. Time to start making a list I think. This forum is amazing and I'm already grateful for the support I've received so far and the support I know I will get from now and through the op.
I wish you well with your continued recovery and will keep in touch with your progress.
My Thanks Again,
Cobbles

User

Posted 12 Sep 2015 at 15:13

So to you all, "A Big Thank You" and when home again, I'll be back here to let you know how it all went and also to offer my support when and where I can.

Cobbles

User

Posted 12 Sep 2015 at 15:37

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