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User
Posted 15 Jun 2014 at 20:41
Hello all,

It's been an interesting 2014 so far. After a high PSA result In December, 6 months of repeat tests, ultra sounds, endoscopes, MRI scans, biopsies, flow tests and all manner of consultations. I've been diagnosed with prostrate Cancer.

Im a relatively 'young' 44, a diabetic but otherwise in great Health. A registered Athlete, I compete in distance racing on my legs & in my kayak. Both at club level.

My options were radiotherapy or prostrate removal. After talking to the surgeon & radiographer, I've decided to go down the laparoscopic prostatectomy route. The radiographer pointed out 3 cancers on my prostrate & said he couldn't guarantee the treatment working & also I'd have a high risk of a secondary cancer later in life as a result of the treatment

My Gleason score is a relatively low 6, my PSA low again at 4.9 so I've got a great chance of a complete cure with surgery. Urinating is agony. Has been for a while, the flow is awful & I've gotten rather good at iPhone solitaire over the past 12 months sat on the loo whilst dribbling for 5 minutes a time. Accidents have happened too due to a 2hr commute each end of the day to work.

After talking with BUPA, I've booked the op for 15th July ( after my hols) & going for a talk with the surgeon on Tuesday. Was thinking of writing down questions so I ask everything i need. Also booked for a Macmillan prostrate support group local meeting on Wednesday.

That's where I'm at. Good to be in the company of like minded understanding fellows in unfortunate circumstances.

Best wishes

Life's a Marathon. Run in peace.

User
Posted 16 Jun 2014 at 10:24
Hi Carlos

I found your post very interesting and wonder why you decided not to have the robotic method of operation. Was it offered to you?.

I am just awaiting the results of my biopsy but anticipate that I will be offered the operation which I will take. I am 70 years old quite fit and have a PSA of over 13 but it has been in the 9 and 10 region for some time now but has just shot up.I am also a type 2 diabetic so wonder if there is a connection

I am due to go on holiday so am hoping to put off the operation until Sept.

I am also finding it helpful reading other peoples experiences on the site

best regards and good luck Carlos

from

Raymond

User
Posted 16 Jun 2014 at 12:00

Thanks for the reply Raymond,

 

I did wonder about the connection too.  The diabetes came as a shock about 5 years ago and i was initially diagnosed as type 1 with a Blood sugar level of 26.  They say diabetics may be more susceptible.

I am thinking its maybe just the luck of the draw. I feel really positive about the future.  After losing my mum when she was only 43 to Cancer, ive been waiting all my life for the knock on the door as it were.

Im so lucky its treatable and I have the choice.  I have my dark moments of thoughts but going to tackle the knock on effects head on.  The sex side of life is going to be my biggest challenge, although we are talking openly about this between us and hopefully going to have fun trying the varoius methods of maintianing intamacy.  Ive had feelings of losing my identity and certainly my masculinity. 

However,  I have an oppertunity of life, which im siezing firmly with both hands.  Ive had to reluctantly cancel my entries for marathons in September and October but have little one in the cotswolds booked for the middle of November.  A bit of an ultra as it goes, 27.7 miles with 2800 feet of climb involved.  I smashed it last year and intend giving it a good thraping this year.  It will be my comeback race - even if i have to crawl the damn thing.

Anyway,  I digress and waffle - with respect to the robotics - The nearest place practicing this method to me is Christies in manchester, 50 miles North.  Ive looked into it and im not convinced that the outcome or recovery with respect to nerve sparing etc will be particularly better than a skilled surgeon by keyhole.

Ive spoken to few men treated by my particular surgeon and hes got a really good name.  Its local, theres ample parking and its a hospital we are used to.

Not to say im right, Im just a builder -  just feel its right for me.

Good luck with everything Raymond and good to make your aquiantance.

 

Life's a Marathon. Run in peace.

User
Posted 16 Jun 2014 at 21:02

Hi Carlos,

 

Good luck with your RP. I had mine 7 weeks ago and now feeling much better. If I can be of any help or offer advice please let me know.

 

Steve

User
Posted 16 Jun 2014 at 22:18
Thanks Steve.

Good to hear you're feeling better!!!

I'm just in from the pub. Birthday boy, few pints with the family and looking forward now to spending most of the night in the bathroom passing water in a painful fashion lol.

The joys eh. Thanks for your note. Hope you continue to make a great recovery.

Best wishes

Life's a Marathon. Run in peace.

User
Posted 16 Jun 2014 at 23:08
Hi Carlos

Sorry you find yourself here. But it's a very supportive forum. I has LRP in Feb 13.

You seem to have your head around it and if you have an experienced surgeon that is half the battle.

Discuss the nerve sparing with him. If this is possible then there is a good chance you will recover EF. A good surgeon can also make the difference regarding incontinence which is another possible SE.

I think you will find an end to your sat down wees once the prostate is sat in a bucket.

Good luck and ask any questions, loads of us have been through it

Bri

Edited by member 16 Jun 2014 at 23:11  | Reason: Not specified

User
Posted 16 Jun 2014 at 23:20
Thanks Bri.

Life's a Marathon. Run in peace.

User
Posted 17 Jun 2014 at 07:26
Hi Carlos,

As Bri says I'm also sorry that you find yourself here, especially at such a young age. I believe that one of the most important things going down the operation route is to be fit and not to be over weight. You are more than half way there on that score. I had open RP way back in 2006, but as it was discovered that my staging was T3b, so it will never go away. But you're in a better position with a Gleason 6 to have a successful op, others might suggest different options, but the descision is yours alone. I also believe that the skills of the surgeon are key, regardless of the type of op you choose.

On the sit down bit, I'm still in that camp, my flow has been extremely slow for years, but in my case it's more than likely due to other bladder troubles.

Best of luck,

Stu

User
Posted 17 Jun 2014 at 19:31
Thanks Stu & all for the positive help. Just had a great meeting with the consultant. Pre op lined up for 13th August.

Have a meeting with HR at work tomorrow to talk about my time off. I'm going to have a few weeks in my caravan and run a last marathon in Bath then go for it.

Looking forward to being in a better place in a few months:-)

Life's a Marathon. Run in peace.

User
Posted 17 Jun 2014 at 19:38
The other good news is that the consultant says I can 'run to feel' as soon as I'm ready after the catheter is removed. Said I will lose some fitness and I must slow to a walk if it hurts but I'm hopeful I can be fit enough to run the Cotswolds marathon in November. Even if I have to crawl to finish. Carlos 1, cancer nil.

:-)

Life's a Marathon. Run in peace.

User
Posted 17 Jun 2014 at 21:08
good for you carlos

and fantastic you have a goal to aim for the cotswolds are not too far from us so will happily come and watch you run in november

User
Posted 18 Jun 2014 at 09:13
Thanks all for your great & inspiring replies. After a session with the consultant last night, I'm well up for it,

He said I was one of the most positive patients he'd seen and was delighted that I was keen to get back running as soon as possible. He told me of an earlier patient who hobbled into theatre the day after the London marathon - aged 72 - had the LRPand was up and running again very quickly. I took hope & enthusiasm from this!

He told me to get Pelvic floor exercise underway straight away. We had fun watching methods & practice on you tube when we got home & I did my first set of 10 in the car on the way to work. The trigger was the '50' signs on the M6 south through Staffordshire lol.

It's our first Dougie Mac prostrate support group meet tonight. My Wonderful wife (she maybe reading this & I'm in need of brownie points) is coming too so we hope to learn more & make some new friends.

Thanks again all.

Carlos

Life's a Marathon. Run in peace.

User
Posted 18 Jun 2014 at 09:42

Originally Posted by: Online Community Member


He told me to get Pelvic floor exercise underway straight away. 

Carlos 

 

So that's official then.  Pack your bags and all aboard the fast train to sunny climateshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

 

All the best for  next month.

 

 

Roger
User
Posted 18 Jun 2014 at 10:14
Thanks Roger, much appreciated:-)

Carlos

Life's a Marathon. Run in peace.

User
Posted 18 Jun 2014 at 12:18

Just been reading through your thread,... Great positive attitude! a definite front runner against this disease,...

keep on keeping on!....http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif... Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 18 Jun 2014 at 16:29
Cheers Sid.

It's positivity all the way:-)

+++++++++++++++++

Life's a Marathon. Run in peace.

User
Posted 18 Jun 2014 at 23:44

Carlos

 

I was diagnosed Dec 2013 had the Da Vinci surgery 28th April 2014. Catheter removed 2 weeks later. I was 99 percent dry within 4 days and have not had a wet pad for the last four of weeks. I put it down to four months of pelvis floor exercises, the wife says it was the surgeons skill. Good luck hope all goes well

Chris

User
Posted 19 Jun 2014 at 00:23
Chris my husband Paul would like to start these pelvic floor exercises before his operation in August, please can you tell me what they are etc as our GP said she had never heard of these exercises for men!!

Many Thanks

Wendy

User
Posted 19 Jun 2014 at 17:52

Hi Wendy when your fella is going to the loo tell him to stop himself mid flow,these are the muscles that control the flow and get bruised not unsurprisingly during the op.

 

How to do Kegel exercises for men

 

It takes diligence to identify your pelvic floor muscles and understand how to contract and relax them. Here are some pointers:

  • Find the right muscles. To identify your pelvic floor muscles, stop urination in midstream or tighten the muscles that keep you from passing gas. These are your pelvic floor muscles. If you contract your pelvic floor muscles while looking in the mirror, the base of your penis will move closer to your abdomen and your testicles will rise.
  • Perfect your technique. Once you've identified your pelvic floor muscles, empty your bladder and lie on your back with your knees bent and apart. Tighten your pelvic floor muscles, hold the contraction for three seconds, and then relax for three seconds. Try it a few times in a row but don't overdo it. When your muscles get stronger, try doing Kegel exercises while sitting, standing or walking.
  • Maintain your focus. For best results, focus on tightening only your pelvic floor muscles. Be careful not to flex the muscles in your abdomen, thighs or buttocks. Avoid holding your breath. Instead, breathe freely during the exercises.
  • Repeat 3 times a day. Aim for at least three sets of 10 repetitions a day.

 

User
Posted 20 Jun 2014 at 21:31
Stopping the flow of urine mid stream is frowned upon by my incontinence nurse. To quote from the leaflet I got " tighten your pelvic floor muscles as if you were trying to avoid breaking wind" Do not hold your breath squeeze your legs together or tighten you buttocks. Do the exercises standing, sitting, walking after urinating or lying down, I did most of mine when driving. You need to find the optimum point between "holding that wind in and clenching the buttocks" the booklet I got was from the NHS incontinence advisory service in Nottingham. Your hospital urology should have literature to fully explain how to do the exercises.

Thanks Chris

User
Posted 20 Jun 2014 at 21:34
Sorry if I caused any confusion but I should of added the caveat of only stop the flow once just to check you know which muscles you are using.
 
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