Recent Diagnoses and Surgery Decision - What's the experiences for surgery, a catheter and the aftermath of surgery?

Hi I agree lots of confusing info out there.  If you look at the profile you will see my OH's journey so far.  The catheter was actually not a big deal just need be careful especially in bed but you will be given everything you need .  You have have to be ready for the incontinence straight after.  OH used heavy pads for the first few weeks and then the heavier use disposable undies progressing to the lighter ones .  We found Depend comfort protect underwear to be the best and they do different strengths. 6 months in he was in control only up once in the night.

Didn't have any ED until after the op and unfortunately 3 years later this hasn't resolved but is the only after effect and is still a work in progress. 

You will see that unfortunately as PSA is rising looks like more treatment will be needed but at least we have a 2nd line if defence.

Can't help with the financial question but I am sure someone here will be able to.

Anymore questions please don't hesitate to ask  

Hi, 

Many thanks for the reply, that is certainly helpful thankyou. I really do appreciate the honesty and detail and advice, thankyou. 

I am so sorry to hear the PSA is rising. I do hope everything works out ok. Good luck in March.

My thanks once again 

Thank you.  On a very positive note a friend had the op 14 years ago and has been absolutely fine ever since.

If you complete details of your psa results etc on your profile it will help anyone responding to your questions .

Good luck in your journey

Hello L9RDY 

A warm welcome to the Macmillan Prostate Community, although I am so sorry to find you here. I am Brian one of the Community Champions here on the group and I have been on my own Prostate Journey for over 3 years.

I can't advise you personally about surgery as I never had that option (I still own my prostate).but here's a couple of points that may help.

* I had an indwelling catheter for 10 months. I had no issues with it, keep it clean, change the catheter and bags when told and it's your best friend. it feels strange for the first few days but it simply became part of me.

* Here's a link to a Community member's full surgery journey you may wish to read:  JohnyBoy .

* You need to keep as fit as a fiddle for surgery and recovery.

* i am Self Employed and didn't go down the road for financial assistance. However if you need any financial help please do contact our Support Line on 0808 808 00 00 (9 am to 5pm Monday to Friday).

* if you do need any help with your mental help just let me know and I will give you some links.

I hope the above helps. feel free here to ask any questions - we are one big family here.

Best wishes - Brian.

Thankyou Brian, 

Thankyou for JohnyBoys link, that is certainly helpful thankyou 

I am very grateful for the reply and information re the catheter and finance too. 

All the best

Hi mate

Take breath, I too recently diagnosed. 

Please, do as much research as you can before deciding on treatment as there are more than two options depending on your staging, gleason etc.

I felt that I was being pushed towards surgery and was having none of it. Had to dig my heels in to get SRBT but eventually found my way thru it.

Please do your research and find what suits you .

Best

Hi there, 

Thankyou for your message 

I was initially offered four choices but on second review the cancer was more aggressive than first thought. so was looking at tow choices - I wasn't pressurised at all (if anything away from surgery) and the decision was totally mine. It's not an easy call as you know and for me it was a number of things that made me decide on surgery. As you say research is vital and I feel I have made the correct decision based on my case and situation. 

I am glad for you that you have managed to also reach a decision that suits your path and I wish you all the best on your journey and thank you again for your advice and support. it certainly made me think so thankyou. 

Wishing you all the best 

Hi L9RDY, I had a robotic prostatectomy 2018, I was fortunate enough to have it on insurance, went in 7.30am Saturday, had tea at home next day. Catherter in for 2 weeks, nurse came to house and took it out. Quite honestly, whole experience a peice of cake. I was fearing the catheter bit as well but be assured, no problem at all, first couple of times you pass urine once it's out, a bit of a sting and that's about it. You will need pads, but that's a very individual issue as to how much you leak and for how long, but its not a big issue, just prepare for it.

As for the ED issue, that is very dependant on the operation itself and the patient. I had partial nerve sparing, one side had to go. Recovering erections are a very individual thing, I was 68 and already weakening somewhat before the op but am able to get semi erect with viagra. Different NHS area tend to have different support ideas, some put you on low dose daily viagra, some supply vacuum pumps. Failing these there are injections or mechanical aids, so all is not lost. Things will be different, yes, but you will be alive. You won't ejaculate, but you will still have orgasms, they may feel different, but I can assure you still good. Our NHS area  advised regular masturbation once catheter was out, to aid in penile rehabilitation, felt odd thing to do while flacid but believe me, well worth it.

As for the financial part, sorry no help, I was already retired. 

Just keep positive, thank goodness that they found it, take the treatment and process as it comes , and may I wish you all  the best.

Hi L9rdy,

I am 9 months post robotic Prostatectomy and bi lateral lymph node removal. 
Tap on my photo to view my experiences, I used this place as my diary.