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My LRP journey

User
Posted 19 Sep 2014 at 14:22
The post LRP consult was positive.

No surprises. My Gleeson remained as 6 and my prognosis T2.

No cancer was present in the margin taken from around the prostate so good news.

I gave a blood sample for a PSA test & arranged to have another in 5 weeks, then a consult in 6 to discuss them both & hopefully see a nice drop.

I also left a urine sample as I'm still very sore passing water so a check for infections.

Urine control appears to have plateaud. I still dribble when getting up, sneezing, coughing etc & upon urgency to pass water.

I was dribbling today doing my daily pfe's which was a new one but I have had too many coffees this morning.

I'm 2 weeks into the cilias, with no affect. Hopefully I can see my gp next weak to progress a pump. He was reluctant last time but the consultant said I need to start using one soon.

It's great progress considering I'm only 5 weeks post LRP & hoping tiny improvements continue.

Onwards & upwards

Carlos

Life's a Marathon. Run in peace.

User
Posted 19 Sep 2014 at 16:55

hi glad that things are going well
re cilias paul is only just starting to get an effect from taking them and he is 4 months post op
so give it time
marie

User
Posted 19 Sep 2014 at 22:16

I started Cilias 2 months ago but had to come off them due to side effects, mainly refux aka, heartburn,

every time I ate something I  suffered cronic heartburn / indigestion / reflux, it took a while for it to establish it self, and for me to figure out what was happening,   now I pay attention and make a mental note of the side effects on medications !

 

 

 

Edited by member 19 Sep 2014 at 22:23  | Reason: Not specified

User
Posted 21 Sep 2014 at 12:20
5 weeks post LRP, ran properly For the first time today. 7 mile road race through the staffordshire moorlands. Decided from the outset that I wouldn't push myself & if I felt any discomfort I'd slow to a walk.

All was good. Could feel that speed had gone in my legs & feet felt heavy but was delighted to even make it to the start line. The wicker running gear even helped to evaporate the dribbles as I went 😜

Finished in 65 minutes which is a good 10mimutes down on last year but over the moon to think that I can come back from this.

Slow marathon training starting tomorrow. Hope to complete the cotswolds race on November 16th. All 28.8 miles.

I'd planned 10 marathons for 2014. I hope to finish on 9 & make up for it in 2015 with 11.

All good 👍

Life's a Marathon. Run in peace.

User
Posted 21 Sep 2014 at 13:46
Hi Carlos,

Well done!

Must feel good to get back to running again. Just take it easy and listen to what your body's telling you.

I know we can all push ourselves really hard in races but sometimes we have to listen to what the body is telling us. We can all underestimate how long it can take to get over our treatment, I'm struggling to deal with losing muscle strength on hormone therapy, difficult when I'm trying to train to run the Reading Half Marathon. I've never felt so weak in my legs before.

Anyway hope everything continues to go well for you. You're in a great position to beat this dreadful disease.

Take care.

Steve

User
Posted 23 Sep 2014 at 14:04
Thanks Steve & good luck with the training for reading half. New flatter & faster course for 2015 I understand so looks promising.

I've decided to park time for 2015 & just concentrate on making sure I'm on the start line & finish safely.

It's great to have a target & a reason to keep in shape & focus on the future. Total respect for you mate. I'll be rooting for you all the way.

Keep in touch about the training & best wishes

Carlos

Life's a Marathon. Run in peace.

User
Posted 27 Sep 2014 at 11:28
Blocked Urethra.

4 weeks post TWOC, life going swimmingly, almost back to pre LRP until last night at the pub after a meal with friends. Couldn't pee. Didn't think much of it at first, re visited half hour later, needed a wee, nothing came out.

Wasn't painful so walked home, tried again, starting to feel urgent. Called the ward, who told me to go to A&E.

By the time I got there, it was approaching 4hours since last passing water & the pain was immense. I felt on the brink of passing out. The staff were fantastic. I was seen too straight away & the catheter came as a huge relief.

The Dr spoke to the urologist who advised it was likely to be the scab at the bladder neck & I was sent home with a couple of night bags & told the district nurse would visit me over the weekend.

The urologist advised the catheter stay in for a further 7 to 10 days & I drink plenty of fluids to flush things through.

It's come as a set back, though far from the end of the world. Guessing my marathon booked for 6 weeks time will have to be defered until next year & I'm back in my Garden View chair with my tea pot for a week or so.

Bugger!

Life's a Marathon. Run in peace.

User
Posted 27 Sep 2014 at 18:05

It's great you can think about next year. Relax and keep improving.

Paul

Stay Calm And Carry On.
User
Posted 27 Sep 2014 at 18:29

 

when I had my catherter removed I was told to drink plenty and come back in an hour or so as they wanted to make sure I could pass water, I hated having the damn thing in and I was pleased as punch that it had been taken out

.....unfortunately I couildnt pee,  felt like I was going to blow up, I was getting in a desperate state, cold sweats , about the pass out, looked and felt like death I was in the urology department waiting room on my own, I laid accross some chairs trying to get some comfort, fortunatly someone walked in took one look at me and asked are your all right....no please get some help, a nurse came and nearly carried me into a room, it was panic stations, I was the last patient on a friday afternoon, the palce was deserted

I was ready to beg them... put it back in....they did relief was slow in coming, a doctor was summoned, an eye specialist ! , somewhat bemuse and confused as what to do, eventully an ambulance was called and I was packed of to A&E, I thought wait until I tell the Mrs, I convinced her not to come along this afternoon, anyway I was checked over and discharged within an hour and told to go back to the hospital in a weeks time to have it removed again, I did and it was sucessful , never did find out what the problem I was ,

but I do having a lasting memory of not being able to pee and about to pass out in desperation, Carols you have my sympathy,

I wish you well and hope the issue is resolved quickly....good luck

User
Posted 27 Sep 2014 at 19:27
Carlos

Have a look at the link below not likely it is quite rare but it has happened to me and I am seeing my consultant next week, suffering from reduced flow again.

http://www.cancercompass.com/message-board/message/all,74403,0.htm

Thanks Chris

User
Posted 27 Sep 2014 at 23:11
Thanks guys,

Chris, that sounds awful mate. Hope they sort you out!

John, sound similar to my situation but bizarrely I had my original TWOC 4 weeks ago and had no problems until now. It felt like the urethra connection to the bladder had healed over or something and it took 2 nurses to get the catheter up and in.

I was shaking with pain, my heart felt like it was going to leap out and I couldt catch my breath. A frightening situation which I hope is never repeated. I was exhausted afterwards and fell straight asleep in A&E. It's knocked my confidence as pre op, I enjoyed fell running and extreme marathons. Often dissapearing with little more than a drink, few snacks and my camelback for 6, 8 hours a time in remote spots.

If this happens again when I'm out on a trek, I'll be snookered. Was thinking of talking to the consultant about self catheterisation to give me a back up plan for the future.

Life's a Marathon. Run in peace.

User
Posted 28 Sep 2014 at 00:32

It seems from posts on this forum that this is more likely after LRP and rare after open surgery yet people still advise newly diagnosed men that keyhole or robotic is the gold standard.

Carlos, I hope the problem settles down once this catheter is removed but yes, it might be sensible to carry a small catheter around with you until you are sure.

Edited by member 28 Sep 2014 at 10:41  | Reason: Not specified

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

User
Posted 28 Sep 2014 at 11:38

Lyne

I was only offered the option of LRP or RT, I did get a second opinion privately and was offered open surgery but the distance to home was not appealing. I was discussing different options with one of our urology nurses and she said "we no longer offer open surgery" but you do have to sign a consent form that says you agree to converting to open surgery if required. Is it down to money, beds and predicted recovery time ?

Thanks Chris

Edited by member 28 Sep 2014 at 20:42  | Reason: Not specified

User
Posted 28 Sep 2014 at 18:32

Carlos
It sounds like bladder neck stenosis ie narrowing of the bladder neck that can occur following RP. I have this problem in that I have a reduced flow.

They were going to rectify it under a GA last year. However following a chat with the surgeon literally on the operating table we decided to leave it. The reason being although my flow is weaker (I can't pxss over a fence as the aneathatist said) it isn't effecting my quality of life ie not up through night, no urgency etc...but he warned if I had the op to put it right I could end up incontinent . Hopefully it won't get any worse
Hope yours is resolved soon

Bri

User
Posted 29 Sep 2014 at 09:29
Thanks guys.

Mine was a total blockage & quite scary. Will hopefully all be sorted when the catheter is removed. I can't understand why the Urologist wants it in for 10 days. Surely once the blockage was cleared, the urethra & neck are clear to run freely.

Going to put out a call to my consultant today & see what he thinks.

If I've got to have any further treatment for a neck restriction, I'd like to have it before I go back to work. I don't think I could stand another disruption in attendance. My employers have been fantastic & I really don't want to upset them any further.

Life's a Marathon. Run in peace.

User
Posted 30 Sep 2014 at 14:14

Hi Carlos,

Hope everything's going well now. 

I'm sure you'll overcome any problems that are thrown at you.  Hope I can get to the level of fitness you have (normally).  It's hard going at the moment, but I'm never giving up. I've told my wife that I'm doing the Reading Half even if I have to walk or even crawl round it!  I know in some ways, I'm trying to regain my youth but my fitness can only improve my chances in my fight against PCa. 

On the subject of my younger days, I don't know if you're a member of the B2PCa Site (worthwhile joining if you're not) but I have posted an old photo in their gallery section of me taken during my running days.  Can't believe I was so skinny.  That can only be achieved by running 40 or 50 miles a week.

Anyway, keep in touch.

Steve

 

 
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