Just diagnosed and terrified.

User

Posted 21 Jun 2015 at 20:24

I was diagnosed with PC on the 16/06/15 which has completely knocked me for six.

I had one main problem for about 3 years before diagnosis which is what took me to the GP, in that if I slept in a particular position I would wake up with this horrible ache in my back passage, which would disappear if I sat upright for a few minutes. Over the coming months I went back and forth to my GP who gave me suppositories. These had no effect at all.

18 visits later and now 2 years have passed I still didn't get any further than what I did on my first visit.

Back in June 2014 I noticed that when I sat on hard surfaces I would get this ache again and sometimes it felt like a burning sensation in my testicles, although this burning sensation was not that often. However when I sat for long periods and tried to go for a wee, it was like I have no control, I just stood there wanting to go but couldn't. At times also when I needed to wee and during urination it was like someone had turned the tap off inside of me, although I had not finished I could not wee anymore and had no push to get it out.

I went back to my GP several times again and ended up arguing with him that something is not right with me, he even told me "what more do you want me to do". I said how about some investigation work instead of suppositories. In the end I got fed up and went private.

This is where my journey started and tests and results started happening.

I had a blood test which immediately came back with PSA 4.6, this raised concern as I should be below 2.5, DRE they said felt normal, sent me for an ultra sound, which came back normal although they could see my bladder had not emptied fully, ended up having an MRI scan, this came back and was not normal, I read on the report there were areas of concern and it mentioned possible stage T3a.

They sent me for a biopsy which I had done and this came back positive. I knew as soon as I walked in the doctor’s office, 5 people in total, two people whose ID badges said "Psychologist", why would they be there if everything was fine, anyway it wasn't. I got told the devastating news. I now have Prostate Cancer.

I am 43 and this is the second Cancer now in my lifetime so far. I had Hodgkins Lymphoma stage 4 back in July of 2000 I was 28 and have been in remission ever since Jan 31st 2001. My last CT scan which was June 2014 was all clear.

They have said I should consider Hormones with Radio or Da Vinci Surgery, I am terrified at both options because of what I will be left with after. I am 43 and no way am I ready to give up my healthy sex life. I feel like a complete failure and reject. It’s bad enough for anyone to have cancer once in a life time but twice in 15 years, I must have seriously been a horrible person in any past life.

For about a month now I also have discomfort in my kidney area, lower back and liver area which can be quite sore to touch at times, this comes and goes. People tell me it’s because I am stressed out and worried and because of how I am feeling and how low I feel this can trigger all kinds of ailments. However I am more concerned about lymph node as the places that hurt have lymph nodes.

I am told that my prostate cancer is the following

PSA: 4.6
Right: 3+4 (Gleason 7) 1 (Something, can’t read the writing)
Left: 3+4 (Gleason 7) 3 (Something, can’t read the writing) 15%
Moderate Grade / small volume
MRI: T3a bulging at capsule but contained

I have a meeting with the Radio and Surgery doctors this coming Friday 26th June to discuss each option.

I have already decided that Da Vinci is the better option for me, because I am scared that with Radio surgery is not an option should anything fail or come back, I am also concerned that the prostate will still be inside me and could become active again over time.

I would welcome any advice on either my staging, my diagnosis, or Da Vinci Surgery and the after math.

I am totally terrified and feel quite isolated and alone.

Thank you for your time in reading my post.

Raiden

User

Posted 07 Jul 2015 at 10:35

Raiden is ok . Im not sure what the situation is with him posting himself etc in the future . He was happy for me to post on his behalf and wants to thank you all . I think like myself he had a total meltdown , but will get through it . I've explained that aswell as all the other people on here , that me / himself / Stuart (TrailleeTrish ) have all had this done at the same time and age more or less . So we can three really help each other real-time . And some very kind guys have given me advice who are 6/7 months on etc . Its LOVELY that help is here for all . I hope my hand RP is just as successful as their posey Da Vinci pahh
Chris

Edited by member 07 Jul 2015 at 10:36 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 07 Jul 2015 at 17:50

Hello Friends

ChrisJ kindly updated you all, thanks Chris

I came home this evening which I am so glad of, didn't sleep at all in the hospital, being woken up every 2 hours for ops. I am very very sore and cant walk to well as it pulls on the tummy but this is to be expected. I am told the surgery went well and they saved my nerves.

Catheter is horrible and so uncomfortable but tolerable and counting down the 10 days to have it removed.

Nerves got the better of me in the anaesthetic room as I couldn't stop shaking, they gave me something to calm me down and then put me to sleep 4.5 hours later they woke me up and I was all done.

The morphine made me very nauseous for about 7 hours after the op so I didn't take any self induced pain relief.

Fragmin injections for 28 days now which I am going to administer myself.

Thank you for all the support and I will post more when I can sit for longer.

All the best to Trish and Stuart for the 9th, will be thinking of you

User

Posted 08 Jul 2015 at 07:12

First nights sleep post op.......

Hello friends.

It was quite difficult finding a comfortable position to sleep in last night but after a few failed attempts and a rather large cushion for back support I got comfortable and slept pretty well considering.

I woke up at 2:15am with a full bag so got up and emptied that, getting up into a standing position really hurt on one side, it must just be where it's all fusing back together, I got up again at 6:15 with another full bag and same difficulties getting up. Going to see if I can get up another way today without putting too much pressure on my left side. The catheter doesn't help as it restricts your movement and starts to pull a little if I move my leg to much. I'll get there, just gotta find a happy medium.

I think tonight I will try the bigger night time bag to save me having to get up in the night, I just need to find a suitable position where I am not kicking it or pulling on it. They gave me a stand which I might try, I just hope the tubing is quite long.

As far as the sleep went I was very comfortable and once in my resting position my tummy was not hurting at all and could sleep fine. It's strange sleeping on my back as this is not a position I like to be in, but I will get used to it for a while especially while I have the catheter in and my tummy so delicate.

The carbon dioxide is floating around in my body causing a bit of gas, expelling this is not easy unless it finds its own way out, helping it out the back door is difficult as it just pulls everything in your tummy the minute you add any force, again not causing a problem and just gonna take a bit of time to disperse one way or the other, I've also been drinking peppermint cordial to help with the gas, I have tea as well.

I'd say my first night at home was a success and comfortable.

Taking it easy today, gonna rethink my whole getting up out of bed position and see how I get on finding a new one.

Need to inject the fragmin later, no biggy, deep breath push / squeeze and it's done. Best thing is not to spend to much time thinking about it and just get it done.

I've not looked at my 6 would areas yet, I'm just not ready for that at the moment. I saw something last night after I gave myself the injection and they do look small as the plasters are small. But will give it a few more days before I stand in the mirror.

Well that's me for day one. I'll keep updating my journey.

My thoughts are with all my new friends and there families and loved ones.

User

Posted 21 Jun 2015 at 20:24

I was diagnosed with PC on the 16/06/15 which has completely knocked me for six.

18 visits later and now 2 years have passed I still didn't get any further than what I did on my first visit.

This is where my journey started and tests and results started happening.

I am told that my prostate cancer is the following

I have a meeting with the Radio and Surgery doctors this coming Friday 26th June to discuss each option.

I would welcome any advice on either my staging, my diagnosis, or Da Vinci Surgery and the after math.

I am totally terrified and feel quite isolated and alone.

Thank you for your time in reading my post.

Raiden

User

Posted 21 Jun 2015 at 21:16

Hi Raiden,

And welcome to the site where none of us would have opted to join or need if we had the choice. That said, now that you are here you will fond this a really useful place for help, information and above all support. Well done on pursuing a diagnosis, pity it took awhile to get sorted. No matter, you now have to deal with what you have.

The good news from your stats appears to be that the cancer is contained, and with a low PSA and a contained cancer, that puts you in to the "curable camp" as far as I am aware.

You may have decided that Robotic Op is your way forward? I would not try to change your mind, the only person who will have to live with the consequences of your selected treatment option, is you.

I had the robot in May 2013, did not go as advertised, but I would not change my mind if I could have my time over.

Sex life does not necessarily end, it may become different for a while, maybe a short while, may be a longer while, it may become as it was after a short while. No one can predict how your body will react.

The only guidance anyone can give you is that you may get all or some use back within up to 2 years, although some men continue to recover beyond that that.

Continence or lack of it is not guaranteed to be affected or not affected, that again depends on your body, and the skill and luck of you and your surgeon.

Don't feel terrified, we have all been where you are now and eventually you will come to terms with what is happening and you will start to deal with it calmly and rationally, honestly. I was terrified when I was diagnosed, totally natural reaction and feeling.

The important things to consider is, what is your prime aim?

Most men here choose life as the first side effect they would like from an op.

Secondly they would like urinary control

Thirdly some sexual function.

Bear in mind that dead men do not complain a lack of sex life or urinary incontinence. The fact that you are ding something about it is a good move.

Do you have male relatives about your age? Might be worth telling them if you have not already?

As I said earlier, you are never alone. You can ask anything you like here. We are all in or have been in the same position that you are now at some point.

atb

dave

Edited by member 21 Jun 2015 at 21:20 | Reason: Not specified

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

User

Posted 22 Jun 2015 at 18:29

Hi Raiden,

I am just dropping in to say Hi and welcome, the others have given you some brilliant advice so far, one thing that I would like to add is about the freezing of your sperm as you say you already have a son so this isn't a top priority but looking to the future you may meet the love of your life and children maybe a priority for her , also you may decide that you would want to have more children with the right person. So just a thought none of us know what the future holds and even if you never used that sperm it would be there just in case. I have heard it is a fairly quick procedure and not at all painful http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. You are still a young Guy with lots of life yet to live.

Keep us updated with your journey (we are all a bit nosey). If you click on peoples avatars then you can read our individual Bios , as CB says your prognosis looks very good (I know that sounds weird) but as you start to gain knowledge of this disease you will understand as for saying that you must be a bad person to have had the bad luck to have a second dance with the big C , well I simply can't believe any one with your smile could be a bad person. It is just sometimes the way the cookie crumbles. We are all here for you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Jun 2015 at 18:52

Hi Raiden,

Sorry to see you here, especially as this is cancer number two for you. From your stats though it look like you've got a very good chance of many more years ahead of you, and as a fellow "doubler" and two years post Da Vinci, life's still pretty good. So, take up the challenge again and push on through!

Flexi

Sent from IPad whilst hiking in The Canadian Rockies

Edited by member 22 Jun 2015 at 18:54 | Reason: Not specified

User

Posted 22 Jun 2015 at 21:47

Originally Posted by: Online Community Member

The toolkit that is being referred to is the PC UK one, you can request online and they will send it in the post. Not sure if thats the one you have already? It's a black folder with loads if booklet inside.

Yes that must be the folder I have, I read everything the very first night and found it very informative indeed.

User

Posted 22 Jun 2015 at 22:54

Originally Posted by: Online Community Member

Just a thought on the freezing of sperm. When I had testicular cancer the norm then was to insist on a vasectomy. I had started RT before the social worker came along and said was I offered the ability to freeze sperm. I hadn't been and with RT in motion that was it. I figured I had had a daughter and my son was on the way and so it was not going to be an issue. Just three years later I was a single parent of two very young children and if another relationship had come along where having children was important to my partner I could not do it.

As it happened it was enough to be single parent but it would have been nice to have the choice,

Hi Yorkhull

That is something I do seriously need to consider once again, I guess it is selfish of me to think only of me, I need to think of others too and the possibility of a new partner.

Maybe banking something and never using it, is better than not banking anything and wishing I had.

Thank you

User

Posted 23 Jun 2015 at 15:20

I note that in your first post you were almost discounting RT on the basis that if surgery fails you can have RT but if RT fails you can't have surgery. There are two things to note:

- it is almost true that you can't have surgery after RT - we do have one member that has had it this way round but generally speaking, it woulds be hard to find a surgeon willing to do it and the side effects tend to be much more guaranteed, partly because surgery after RT can't be nerve-sparing. It is also less likely to be successful as it is much harder to remove a mushy splodge of irradiated gland without leaving any behind.

- however, the thinking that surgery gives us two bites at the apple is flawed. Even with surgery followed by RT, the outcomes are poor. Not because RT is difficult after the op but because statistically, anyone who needs salvage treatment for PCa is less likely to ever get true remission.

The sensible thing is to focus on the treatment that you and your medics believe will give you the best chance of a cure; to my mind, choosing a treatment based on the choices left if it fails is like wearing plastic bags on your feet in case your boots leak rather than buying waterproof boots.

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

User

Posted 08 Jul 2015 at 18:23

The term one time use for the night bags is a bit deceptive, the bags are actually Ok to use for 3 - 5 nights or more, the ctiical bit is to keep the catheter site entrance clean and to do the normal hand washing stuff after emptying, attaching etc. Lyn has made a really important point and I would always recommend using the night bag even if it were for that reason alone.

User

Posted 09 Jul 2015 at 07:48

2nd nights sleep.....

The district nurse came back round last night and gave me some more night bags so I now have enough for the 10 days, which is better.

Putting the bag on last night was a real struggle, the whole bending down is not easy with everything pulling, but I got it on and looking this morning it was a success, all the waste was in the night bag that I rested in a bucket beside my bed, and I didn't have to get up through the night which was a bliss.

Realising that so much of my every day life and movement relies on my tummy muscles I have swallowed my pride and asked for help, My brother is travelling from London to Liverpool today to spend a week with me, I will be so glad of the company and support, there are so many little things I just cant do. Its made me realise how lucky the men are with wives are partners who support, love and look after them. Its put a lot into perspective for me.

I brought one of those claw pick up devices which should arrive today from Amazon, that might help when I drop things or to grab things out of my reach.

I didn't sleep to well last night, kept waking up every couple of hours and was dreading getting out of bed this morning as it pulls and stings so much on my tummy, I am worried I am going to tear something, but I did manage to get up this morning and it wasn't to bad at all. Once this catheter is out it should be easier as I will have more leg movement to support myself.

I am keeping myself nice and clean, as I always do, although I do feel a little bit of stinging around the entrance but I am told this is normal, and although I had some kind of discharge in my undies on the first day I was out of the op, I don't have anything new, so I am hoping all is ok with it. Counting down the days until I can have it taken out.

My thoughts and thanks are with you all, especially Trish and Stuart, hope all goes well today with the op.

User

Posted 09 Jul 2015 at 12:26

I was so pleased that my good lady was around to put my night bag on and take it off again in the morning. At night I would just flop into bed and she hooked up the night bag. If your btother can help with this it will make life easier. It shouldn't be so long before you feel fit enough to change your own.

I hope you are not having any problems with constipation. That was a real concern for me until I got some liquid dynamite to shift the backlog.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 10 Jul 2015 at 10:35

Originally Posted by: Online Community Member

First time..

Well I felt a bit of stirring so thought I would try and go for a number two (sorry)

I could sit ok on the toilet but noticed small leakages coming out the end of my willy while I was sat there waiting to go. This has worried me so I got back up again without doing anything.

Is this normal? The catheter is still working ok with fluid going fine into the bag after I tried the above.

Hi Raiden,

I've been away for 5 weeks in the caravan so not been on here lately http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Leakage can / does occur when passing a motion sometimes...... as long as urine is still draining into the bag there is nothing to be concerned about...
I used to wrap some toilet paper around the catheter exit area to soak up any leakage when doing number two's..

Hopefully your catheter will be removed soon and won't have to put up with this situation for very long...

Best Wishes

Luther

Hi Luther

Thank you for replying that's a great help to know it can happen and it's nothing to worry about.

I did wrap some toilet paper around the end when it was happening and will do again when I try again.

I'm hoping its removed next Thursday, think it will be so much easier once that's gone.

User

Posted 11 Jul 2015 at 08:08

Steve

Give the district nurse a call and get her to bring you some movicol. Tastes rotten but does the job. And why are you not eating? You need to be eating, even if it's only a bit. Weetabix is always good.

User

Posted 12 Jul 2015 at 06:48

It happened last night...... :)

Took quite a while to get going but the main thing, it happened :)

I felt so relieved afterwards and although it was very awkward to go it didn't hurt too much.

Think I might brave some toast this morning, as I love my toast and have missed it so much.

The fruit went down a treat last night.

Happy Sunday to you all
X

User

Posted 16 Jul 2015 at 18:34

Raiden,

your bladder/urethra muscle has been clamping shut, as far as it is concerned, on a catheter pipe. removal of that pipe means the the muscle has to learn again to clamp shut to a new zero, itself, just like when you were a baby.

It will take time, may be weeks, maybe months, may be years. It is beyond your control. Took me 7 months to go completely padless.

Give it time, be a patient patient.

atb

dave

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

Show Most Thanked Posts

User

Posted 21 Jun 2015 at 21:01

Hello Raiden

I'm the wife of someone who was diagnosed recently: PSA 19:7, T3a, Gleason 4+3, low volume but bulging - so similar to you.

He was given 3 options: da Vinci + hormones, radiotherapy + hormones or hormones, radiotherapy & brachytherapy, he chose the final option. There was much research done and several visits to meet with urologists and oncologists before he made his decision, there was no pressure from the hospital to decide "on the spot".

The men on this site have made their treatment choice to suit them personally, you need to do the same - look at all of your options before you make your final decision. The PCUK specialist nurses are very knowledgable and helpful so if you want some impartial input give them a call.

If you click on my profile you will see my husband's history, there a quite a few wives / partners on this forum - my husband is IT phobic!

Wishing you luck with journey, keep posting.

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 21 Jun 2015 at 21:14

Hi Raiden , and thanks for ure message on my post. I'm so sorry this has happened to you and that it is the second time u have faced cancer. You have done exactly the right thing joining this site. Wonderful wonderful people with so much knowledge and experience. Once the initial panic has subsided make sure you download the toolkit from the site and read it back to front. And go through all the threads that relate to ure specific concerns. Everyone on here will help you get thru this with support

Chris

If life gives you lemons , then make lemonade

User

Posted 21 Jun 2015 at 21:16

Hi Raiden,

The good news from your stats appears to be that the cancer is contained, and with a low PSA and a contained cancer, that puts you in to the "curable camp" as far as I am aware.

You may have decided that Robotic Op is your way forward? I would not try to change your mind, the only person who will have to live with the consequences of your selected treatment option, is you.

I had the robot in May 2013, did not go as advertised, but I would not change my mind if I could have my time over.

The only guidance anyone can give you is that you may get all or some use back within up to 2 years, although some men continue to recover beyond that that.

Continence or lack of it is not guaranteed to be affected or not affected, that again depends on your body, and the skill and luck of you and your surgeon.

The important things to consider is, what is your prime aim?

Most men here choose life as the first side effect they would like from an op.

Secondly they would like urinary control

Thirdly some sexual function.

Bear in mind that dead men do not complain a lack of sex life or urinary incontinence. The fact that you are ding something about it is a good move.

Do you have male relatives about your age? Might be worth telling them if you have not already?

As I said earlier, you are never alone. You can ask anything you like here. We are all in or have been in the same position that you are now at some point.

atb

dave

Edited by member 21 Jun 2015 at 21:20 | Reason: Not specified

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

User

Posted 21 Jun 2015 at 21:21

Hi MLJ

Thank you for saying hello and for the information.

They said that because of my age brachytherapy would not be an option and because I have this bulge which they also said they could not guarantee plantation on the seeds where the bulge is.

Its very difficult to decide on the right choice even though I do think Da Vinci would be my best option especially as I would loose the Da Vinci operation as an option if I chose radio first and something did not work or I relapsed later on.

I have a meeting on the 26th with both doctors and have written my questions and concerns on both options to take with me.

How is your husband getting on?

User

Posted 21 Jun 2015 at 21:25

Hi Chris

Thank you again

Its only been an hour or so and already I now know I am not alone any more.

User

Posted 21 Jun 2015 at 21:29

Hi Raiden

With what you have gone through at such a young age I can see why you want it out but do advise you have those meets before finally deciding.

Some of us I have done a short cancer course. That reinforced my view its mostly down to bad luck and certainly not punishment so try to let go of those thoughts which will only drag you down at a time when you need all the positivity going.

You are not alone here

Good luck to you.

Ray

User

Posted 21 Jun 2015 at 21:29

Hi Raiden,

I can completely emphasise with you as I was diagnosed in November last year and had my prostate removed 3 months ago tomorrow. It's scary. The online nurses on here are really good to clarify any medical points you are unclear about. I found them really useful at the begining of my treatment.

Please have a look at my profile. I know your young but that is on your side as your recovery rate should still be good. Read all you can but there will come a time when you will need to decide on a treatment option and only you can do that.

Take care,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 21 Jun 2015 at 21:32

Hi Countryboy99

Thank you for taking the time to read my post and to send me a message.

I think your 3 side effect options are definitely in the right order, but I do worry a lot about the sexual function. Only because of my age and the fact that I have never married but always hoped to one day. But right now the most important aspect is to get rid of this disease inside of me, that the number one priority, the other stuff I will just have to deal with it the best I can.

They have offered me tablets, pumps, implants etc but that entire world is all new to me and not one I am willing to spend time on looking at until such a time post operation or treatment.

May I ask what didn't go to plan with your Da Vinci? Its ok if its personal.

User

Posted 21 Jun 2015 at 21:34

Thank you Ray

which option did you go for?

User

Posted 21 Jun 2015 at 21:36

Hi Paul

Thanks for the reply

How do you feel post op?

I will certainly go and read your story now.

User

Posted 21 Jun 2015 at 21:53

Raiden,

I am fine. Incontinence is negligible just a little stress incontinence. No movement in the erection department but it's early days and I may need to look at pumps and medication.
I still get tired easily but some of that I think is due to post op lethargy making me lazy.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 21 Jun 2015 at 21:59

Hi Raiden,

Just wanted to follow Ray's comment that getting cancer is just one of life's cruel twists not anyone's fault but your Intial prognosis sounds good as they feel they can 'cure'. I am in my second cancer too, having had testicular cancer 33 years ago and just went I thought I was ok along come PCa. This time I have an incurable version so cannot give you specific advice re surgery or RT as it's not offered to me but I can say I am still here 3 1/2 years on, So there are plenty of tools in the box. It is frightening as you set out on this unwanted journey but there is lots of support here, so keep asking questions,

User

Posted 21 Jun 2015 at 22:05

Hi Raiden,

If you read my profile, I documented my life after the op. I have no idea how to find it though? It was on the old site.

The Robot option leaflets and promo material suggest that you will be in and out of hospital within 2 days. I was in for 5. I was discharged at about 3pm and back in by 7pm for another 2 days. Had a lot of plasma in my drain bag apparently.

Still would not change my choice though. Looking back, no matter how bad I thought it was at the time, it could have been worse, and I would still have coped.

There will be a stage where you do come to terms with what you are going through, and when you do, you will be calm about it. Happened to me about a year or so ago, just became calm about PSA tests and the urinary control issue and the sexual function issue. Now dry, unless I road run, so I don't. Have not worn a pad for about 15 months. Sex is great again, first normal orgasm by sexual intercourse was 6 months after the op. Haven't looked back. And I am an old bloke, so you will probably be recovering better and quicker in all areas.

Getting your head around the issues is the key to dealing with it all better and more rationally. But that may take some time?

One phrase we often use in various forms here is that there is no point worrying so much about tomorrow that you forget to enjoy your today.

atb

dave

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

User

Posted 21 Jun 2015 at 22:06

Hi Paul,

Thank you

How long did it take to get the incontinence under some sort of control?

I had a PM earlier from one member on this forum who said a pump turned everything around in that department which otherwise was not moving on it own.

User

Posted 21 Jun 2015 at 22:09

Hi Yorkhull

Thanks for the post.

3.5 years on, well done to you sir. So we are both double C men, never did I think that I would get a different type, I always feared a relapse of the first but this has really bowled me over.

Keep being strong my friend

User

Posted 21 Jun 2015 at 22:17

Hi Countryboy99

Thanks for that.

I will keep what you have said in mind and will look out for those things post surgery.

Could I ask you a couple of questions?

1: How long from your meet with the surgeon was it until you had the actual surgery?

2: With the incontinence at its worst is it just leaking or is it like a full on wee when you need to go? Does one feel the need to wee like I do now or does that disappear?

3: I have read it becomes a dry orgasm as in no liquid at all, do we still feel the sensation of an orgasm or does that change? (sorry I didn't know how else to put it into words)

4: I am confused about post op PSA tests especially as there is not prostate in the body on people who opt for the surgery? I have this as a question to ask.

User

Posted 21 Jun 2015 at 22:29

1. about 5 -6 weeks.

2. initially it was hard to control, and I was using 3 to 4 level 2 pads per day. I used to give up in the evenings and "bag up". Put a conveen sheath on with a leg bag and relax and pee into the bag when I needed to. This gave me a break from constantly going to the toilet and let me sleep through the night. Others may have chosen to persist with pads etc. You will have to see what works for you if and or when you have a problem. I did what I gelt was best for me. Same with the post op meds, I experiment a bit. No pads since about January 2014. No problems, unless road running.

3. dry orgasm, just as intense with the muscle contractions and the robbing etc. Just dry. No damp patch. Have you considered sperm freezing with anyone yet so that you can have children in the future?

4. as I understand things, the post op PSA tests are to ensure that if any part of the gland is not removed, or if a cancerous cell is out there in your body somewhere it is picked up quickly and any other treatment options looked at, and applied early.

And please don't worry about asking anything, we are all in the same boat and you will get some ladies on here better qualified than us men to answer some of your questions in due course no doubt.

dave

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

User

Posted 21 Jun 2015 at 22:38

Raiden

My husband is doing fine thanks; no mood swings, man boobs or hot flushes yet!

Our hospital have a prostate support group meeting every month, it may do you good to get to one of these as you'll be able to ask people who've had treatment any thing that you need clarified - there is also a prostate radiologist and specialist nurse present as well. If there's not one held at your hospital search for a local one on this site.

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 21 Jun 2015 at 23:49

Hi Raiden,

Very bad luck that you have had two kinds of cancer and at such a young age.

Many people regard Prostate Cancer (PCa) as a disease of old men without acknowledging that some men, albeit a minority, are diagnosed with it under 50. Some GP's are reluctant to test men under 50 and in some men even older unless they exhibit the symptoms of PCa (and by this time the PCa can be already advanced).

But notwithstanding what should have been done or might have been done earlier, you now have to consider what is the best way forward for you. All treatments for this disease have potential side effects and one of them is Erectile Dysfunction preventing normal sex. You have to face the possibility that sex after treatment may be different in the short or in some cases the long term. If you have surgery much depends on the skill of the surgeon and whether the location of the cancer enables him to save nerve bundles. Some men who have difficulty having an erection use prescribed drugs to help achieve this and or use devices such as vacuum pumps or penile implants etc. Radiation treatment treatment can also result in Erectile Dysfunction and HT in a loss of libido. Treatment can be a trade off for eradicating the cancer or restraining it. I say can be because some men are not greatly affected sexually by treatment.

A good idea on your part to prepare a list of questions to help you decide the treatment you opt for. This may be one treatment or a combination of treatments. I take it you have done your research on treatments and have read the 'Tool Kit' on the main part of this site. Another good place to explore is the YANA site (You are not alone now). It was started by an Australian, Terry Herbert who sadly passed away quite recently having had PCa for many years. It has attracted members from many countries and is well worth working your way round the site http://www.yananow.org/

Do ask any questions that come to mind. We are not clinicians but accumulatively members have a lot of experience.

Barry

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