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User
Posted 18 Jun 2014 at 07:54

Hi to all. I am new to this forum have been pointed in this direction by Naomi one of the prostate cancer uk specialist nurses.
I had a 'well Man' check a year or so ago and despite everything else being very good I was diagnosed with high cholesterol. I went through a stream of tests and examinations and a year on the consultant and Harefield Hospital had to concede that he did not know why my cholesterol was high if I did not take statins. So I continue on statins and have no disc enable side effects.
A few months ago I beg and to notice a few erection issues, my little friend wasn't as interested as normal. I was concerned that it could be as a result of the statins because erectile disjunction is a possible side effect of the drugs. After stopping and changing statins had no effect I had a PSA test and got the results of 8.9.
I was referred for a DRE which if found a rather uncomfortable experience ( little did I know what was coming later ) the doctor said that there may be a slight swelling on the left and He referred me for a biopsy
So far I am walking blindly though this just doing what I am advised and not stressing myself with google research.
I attend my biopsy appointment , now that was uncomfortable and left feeling rather numb physically and mentally, but with an appointment for the results in a few weeks.
As I await the results I get a letter inviting me for and MRI, so off I go to another hospital and have my prostate painlessly scanned.
The results of the biopsy are due so I go to the hospital for those and get the final bombshell yes you have prostate cancer in two of the twelve samples taken.
I was rather shocked, I had been wandering through this process so far, getting on with life not really expecting this result because I am an otherwise gut and healthy 48yr old.
I hadn't told my wife anything before this point, she had had enough stress going on through work in the public sector (and for the first time in her life had gone on antidepressants). My wife said it was good that she was already taking the medication before I told her as it might have pushed her over the edge but since then she has been great and very supportive and affectionate.
So since last week I have been reading lots about options and spent over an hour on the phone to one of the specialist nurses here. If I had been asked for a decision on 10th June 14 I would have said cut this cancer out of me. Having had a week to research and looked at the possible side affects of RP I had come down on the side of active surveillance.
My wife and I met with the consultant surgeon from the Lister Hospital [removed by Moderator] on 17th June. We had a long and frank conversation about the situation. Not on negative side were the 2 cancer samples found, the G3 or the T2a, N0, M0, however, my PSA of 8.9 and the MRI showing a grey mass contained in the left side of my prostate were a raised concern
So, given that I am 'young' and healthy now, should we delay the inevitable removal of my prostate or do it now with better chance of a recovery , the advice was to have an RP done, no need to rush at it but sooner rather than later.
So here I am day one after the decision thinking about the future, thinking why me ! Why so young ! And practicing my pelvic floor exercises. The only positive I can find is that my cancer has been found early and I have a good chance of making a reasonable recovery

Edited by moderator 22 Jun 2014 at 09:49  | Reason: Not specified

No matter how you feel get up, get washed, get dressed and go out. This is not a dress rehearsal
User
Posted 22 Jun 2014 at 00:51
Hi Noddyclock,

You're probably about 2 weeks behind me with the diagnosis. I spoke to lots of people & opted for the RP. Im of the opinion that I'd like it gone & deal with the side affects then.

I'm a relatively healthy 44year old, the incontinence will be a challenge. My job involves lots of driving, presentations & lots of client meetings. I'm on with the pelvic floor exercises in anticipation. Standing up in front of a room full of people & having a leakage of some description will be challenging.

My kids are 23 & 19. I've already had a vasectomy so being sterile isn't of concern. We have a fun & fulfilling love life & plan to be patient & enjoy experimenting with the help available to get us back on track.

It's been an awful 6 months of multi PSA tests, MRI scans, biopsies, ultra sounds & flow tests. The thought of repeating this for maybe years, thinking that the next time, I may have to have an RP, fills me with dread. Besides, it hurts when I pee, it takes maybe 5 minutes a time & the consultant told me my bladder wall is damaged due to the uretha restriction for so long.The radiologist pointed out 3 areas of cancer & said he wouldn't recommend radiotherapy for me. Also, with being young(ish) it may induce a secondary cancer later in life. I'm hoping to face it up, take at least 8 weeks away from business to recouperate.

The decision is the right one, I think for me. I've been on the anti depressants myself (citalopram) for nearly a year due to work anxiety & I don't think I'd have coped for the past 6 months without them at all.

Hope things work out well for you.

Edited by member 22 Jun 2014 at 08:45  | Reason: Not specified

Life's a Marathon. Run in peace.

User
Posted 22 Jun 2014 at 09:31

Hi Noddy,..

Sorry to hear you have prostate cancer at a such young age,.. but thankfully it is still inside the prostate with a T2a staging. keep positive about this, there are a lot of people on here who have had the procedure (including myself!) so if you do need to ask questions, simply ask away,... there is a load off information out there, but be wise where you look as it is a bit of a mine-field!!! All the best. Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 23 Jun 2014 at 12:00
Hi Noddy,

I think you are right to carefully consider your next step, weighing up the reasons for having treatment soon or deferring it and taking into account the likely side effects that men can experience to a greater or lesser degree. Unfortunately, not only are there marked differences in the extent of side effects but also in how effective treatment is so that it is not unusual for the main treatment taken to have to be supplemented by a different treatment(s). Whilst many men would not wish to rush into treatment that might be not be necessary at the time or indeed at all, some, through choice or late diagnosis are not treated sufficiently early for the treatment to be most effective. It also has to be accepted that neither biopsy not scans are anything like 100% accurate. This is known because when some Prostates are being removed and subsequently examined it has been found in some cases that the cancer is more advanced and or virulent than originally thought, though in fewer cases it has been found to be less so. Do you have treatment early and give yourself the best chance of it being most effective or wait until it looks pretty certain that the cancer is progressing to the point that treatment would almost certainly be beneficial? Then there is the matter of what treatments are open to you and given the choice what to opt for. So this is very much a matter of personal evaluation of your situation in the light of what your consultants have told you and your attitude.

It can be a hard decision to make but many, like myself, find it less burdensome after a decision on what is right for them has been made.

I

Barry
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User
Posted 22 Jun 2014 at 00:51
Hi Noddyclock,

You're probably about 2 weeks behind me with the diagnosis. I spoke to lots of people & opted for the RP. Im of the opinion that I'd like it gone & deal with the side affects then.

I'm a relatively healthy 44year old, the incontinence will be a challenge. My job involves lots of driving, presentations & lots of client meetings. I'm on with the pelvic floor exercises in anticipation. Standing up in front of a room full of people & having a leakage of some description will be challenging.

My kids are 23 & 19. I've already had a vasectomy so being sterile isn't of concern. We have a fun & fulfilling love life & plan to be patient & enjoy experimenting with the help available to get us back on track.

It's been an awful 6 months of multi PSA tests, MRI scans, biopsies, ultra sounds & flow tests. The thought of repeating this for maybe years, thinking that the next time, I may have to have an RP, fills me with dread. Besides, it hurts when I pee, it takes maybe 5 minutes a time & the consultant told me my bladder wall is damaged due to the uretha restriction for so long.The radiologist pointed out 3 areas of cancer & said he wouldn't recommend radiotherapy for me. Also, with being young(ish) it may induce a secondary cancer later in life. I'm hoping to face it up, take at least 8 weeks away from business to recouperate.

The decision is the right one, I think for me. I've been on the anti depressants myself (citalopram) for nearly a year due to work anxiety & I don't think I'd have coped for the past 6 months without them at all.

Hope things work out well for you.

Edited by member 22 Jun 2014 at 08:45  | Reason: Not specified

Life's a Marathon. Run in peace.

User
Posted 22 Jun 2014 at 02:48
Hi Noddyclock,

whatever treatment route you choose, the important thing is to commit to it completely and then not look back. My husband was 50 at dx and chose RP although he has sometimes felt since that in hindsight he would have been better having a shorter life without the side effects. hindsight is a wonderful thing, of course; he needed salvage RT and HT a couple of years later anyway so the op was not the be all and end all.

By the way, best to remove the name of your surgeon - there are very few rules to this site but naming medics is a no-no!

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

User
Posted 22 Jun 2014 at 08:58

Ello Noddyclock,

I've recently undergone a robotic assisted radical prostatectomy ( 10 days ago ).... still very early days for me, but I agree with Lyn's comment regarding commitment to the treatment you choose....

I went into this operation knowing that there will be a chance of me needing post operative radiotherapy afterwards.......but after speaking to my consultant at length  I'm totally  convinced I chose the right route for me......



Good Luck with your forthcoming op

 

 

 

User
Posted 22 Jun 2014 at 09:31

Hi Noddy,..

Sorry to hear you have prostate cancer at a such young age,.. but thankfully it is still inside the prostate with a T2a staging. keep positive about this, there are a lot of people on here who have had the procedure (including myself!) so if you do need to ask questions, simply ask away,... there is a load off information out there, but be wise where you look as it is a bit of a mine-field!!! All the best. Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 22 Jun 2014 at 09:41
Hi Noddy just my perspective on it,I'm getting on toward 12months post op,I would say the skill of the surgeon is paramount,I regained continence after 5 months,I can get erections with the help of some manual handling with out the need for viagra/cialis I may be one of the lucky few but I put it down to the skill of the surgeon.I was 56 at the time so age is on your side. Stay positive as other's have said and good luck.
User
Posted 22 Jun 2014 at 09:48
When I had my first biopsy, only 1/12 samples contained a minimal amount of cancer and was diagnosed G 6. I expressed concern about the cancer spreading, had a template biopsy, which had 6/26 cancerous cores, and was changed to a G7. I had a robotic RP in April, continence is improving, no sign of my little sticky doing anything yet, (I'm on daily cialis to help nerve repair), but I'm as happy as Larry.

In the end, it's your decision.

PS Good luck to your wife. I was a teacher. Enough said.

Stay Calm And Carry On.
User
Posted 22 Jun 2014 at 11:11
Hi Noddy

As others have said consider the options available to you and committ to your decision. If you do committ to surgery check out the experience of your surgeon. How often does he do this procedure, how many has he done, what's his view on SE's and quality if life etc

There are many on here including myself who have been through it, so ask away

Bri

User
Posted 23 Jun 2014 at 12:00
Hi Noddy,

I think you are right to carefully consider your next step, weighing up the reasons for having treatment soon or deferring it and taking into account the likely side effects that men can experience to a greater or lesser degree. Unfortunately, not only are there marked differences in the extent of side effects but also in how effective treatment is so that it is not unusual for the main treatment taken to have to be supplemented by a different treatment(s). Whilst many men would not wish to rush into treatment that might be not be necessary at the time or indeed at all, some, through choice or late diagnosis are not treated sufficiently early for the treatment to be most effective. It also has to be accepted that neither biopsy not scans are anything like 100% accurate. This is known because when some Prostates are being removed and subsequently examined it has been found in some cases that the cancer is more advanced and or virulent than originally thought, though in fewer cases it has been found to be less so. Do you have treatment early and give yourself the best chance of it being most effective or wait until it looks pretty certain that the cancer is progressing to the point that treatment would almost certainly be beneficial? Then there is the matter of what treatments are open to you and given the choice what to opt for. So this is very much a matter of personal evaluation of your situation in the light of what your consultants have told you and your attitude.

It can be a hard decision to make but many, like myself, find it less burdensome after a decision on what is right for them has been made.

I

Barry
User
Posted 23 Jun 2014 at 14:57
Thanks Barry ,

My surgeon gave a fairly persuasive argument for RP, cited extensive experience and his success with the robot, even said if he were in my position he would have the op. I can't be too cynical about people saying how good they are, after all he isn't selling my anything, I am receiving a very efficient and profession service in the NHS.

Kind regards

No matter how you feel get up, get washed, get dressed and go out. This is not a dress rehearsal
User
Posted 23 Jun 2014 at 22:38

Hi Noddy

 

I was diagnosed in Dec 2013 and went on a roller coaster of shall I, shan't I right up to the time I was in the anaesthetic room. Eight weeks post op and back at work after four weeks, I wonder why I even considered not having it done.  10 out 12 samples positive, PSA 7.7 Dec 2013 rising to 10 just before the op 28th April 2014, my GP missed a PSA of 6.9 three years earlier. I think I am very fortunate to have cracked the incontinence already, do the pelvic floor exercises. I had the Da Vinci surgery and the nerves were not spared (too much disease) but perhaps they could have been if had been diagnosed and treated three years earlier. The experience has strengthened our relationship and although I have ED and still waiting for the aids to arrive we already have a VERY fulfilling love life. Too echo other posts, the decision is yours, but make sure you have whichever treatment you opt for do not leave it too late, and keep doing the pelvic floor exercises.

 

Best of luck Chris  

 

 

XX

User
Posted 24 Jun 2014 at 08:03

Noddy

 

Just a follow on from previous post, forgot to say I got the all clear last week PSA undetectable.

Thanks Chris

 
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