Hello Steveann

I'm sorry to hear about your recent diagnosis. It's understandably a difficult time for you at the moment, and I think many of our members will know how worrying it can be when facing treatment choices. 

We have a number of men here at Cancer Chat who have been through different treatment options for prostate cancer and hopefully some of them will reply to share their experiences with you. You might also like to look at the Prostate Cancer UK website where you'll also be able to connect with other men who have had this diagnosis and access information and support. 

If you'd like to chat things through with one of our team of nurses you're welcome to call them. I know that they will be happy to offer any information, advice, and support they can. They're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

Whatever choice you make Steveann, I wish you well with your treatment and hope that your recovery goes smoothly. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Steveann.

I've been away from this site for a while, so apologies for the late reply to your message.

I was diagnosed with prostate cancer in 2010, gleason 4+3 and psa either 5.4 or 5.6 - so almost identical to you.  I was advised against radiotherapy due to previous IBS, and I opted for Da Vinci surgery.  As you can tell, I'm still here to tell the tale!  The worst of my incontinence was over in 3-4 months, and by 6 months it was almost gone.  By 8 months, I had stopped wearing any protection at all, although I made sure my bladder didn't get over-full.  Now, it's simply not an issue.

Thank you very much for your reply. I have spoken to 2 others who had the op with similar, good outcomes. I'm seeing the surgeon tomorrow and 95% happy to go for the surgery. If there are any tips you can give? How was the first month? I have to self inject blood thinners, think I can do it but worried about getting it wrong. Sitting around, looking after myself, won't come naturally. How long before you were out walking normally.? Thanks , Steve

Hi Stevann.

For the first two weeks after surgery, I was mostly sleeping. Wake up at 8, get some breakfast, have a shower then watch TV until lunch. Crash out from 1.30 to 5.00, then watch more TV and have evening meal.  Drop off to sleep about 9 pm and sleep through to 8 am! 

The actual injections were really easy and I had no difficulties at all.  There was no preparation - just remove the cap off the injector, pinch some skin level with the navel, push in the needle and inject.  I found it easy to hold the syringe between thumb and second finger, and push down the plunger with first finger.

The first couple of days after having the catheter out were no fun, since I couldn't judge when my bladder was full, so I kept rushing to the loo.  Proper sensation returned in a few days, but I had to wear pads day and night - and the novelty soon wore off.  I experimented with various pads and found the Tena for Men best during the day, and some other best for sleeping.

After 3-4 months I ditched the full size pads and used Always Ultra!  I cut one of these in half and used one half during the day and the other half at night. 

I returned to work after three months, still wearing pads.  I started driving the car after about 1 month and riding my motor scooter about 2 months after surgery. 

I started pelvic floor exercises when the catheter came out.  I did these three times a day (actually, it was when I remembered!).  After 6 months I was 99% continent, and then each month added another 9 to the end, so by 12 months I was 99.99999... % continent.  I continued doing the pelvic floor exercises for a couple of years, but after 2-3 years I was as continent as I was before surgery, and I haven't done the pelvic floor for ages.

About 18 months after surgery, I donated my remaining pads to the urology department of my hospital, and they were most grateful.

I see you also asked about walking.  I was able to walk normally the day after surgery, buy of course I couldn't go far without getting tired.

Thank you again for your time, it's all useful   practical stuff to know what is likely to happen. Regards, Steve

Hi Steveann,

Sorry to find you on here and that you've been diagnosed with prostate cancer.

My husband was diagnosed almost 5 years ago at 57 and his consultant advised him to have the surgery (robotic prostatectomy).  It was a difficult time and he worried like you about incontinence as he's very active and sporty.

I hope you can be reassured that my husband recovered very quickly and 6 weeks later he had very little issues.  Immediately post op he was very sore but as soon as the catheter was out he felt so much better.  There may have been the odd 'leakage' if he had a few beers and was careless in the early days but now he carries on as normal.   His recovery was pretty swift.  I would say that it's very important to do the pelvic floor exercises as they really help.  My husband did them every day whilst out in the car.   He chose the surgery because he wanted to keep radiotherapy as a 'safety net' for the future.  If you have radiotherapy before surgery it's very difficult to then remove the prostate..

I wish you well with your treatment and recovery.

Mary

You're very welcome.  I would say too, difficult as it is, that successful outcomes very much depend on the skill of the surgeon with this nerve sparing procedure.  It's just as well to research who will be doing the operation, ask a lot of questions and ask to be referred to a centre of excellence if you have any doubts.  We're North West and my husband's surgeon was the top man in his field in our area, so he felt lucky to have him.  You can ask to be re-referred elsewhere and get second opinions if you have any doubts at all.  Be your own advocate.  It's not always welcome but you have a right to do this.

Good luck.

Mary

Hi Steveann, I know just how you feel, I felt just the same confusion & apprehension when I was diognosed.[see my post under "wackertod" of today for history]

The main thing is you must keep talking with your partner/wife and read all the publications/advise as possible. There is lots of people out there to help. My wife & I discussed & decided to have the De Vinchi operation & after the worse thing to deal with was the callostamy bag & tube. My advise is make your mind up BEFORE MEETING WITH CONSULTANT & write down questions to ask.

I recovered well from incontinence [about 3months from having bag taken out] No dobt you have been advised about erectile disfunction etc. but this didnt bother me at the age of 73! You are correct in saying you can have radiotherapy AFTER the operation [but not the other way round]. I had salvage radiotherapy on th prostate bed [36 sessions but soon goes!]

I have had bleeding from the rectum since April this year but is being investigated/dealt with.

The best advise I would give is make your mind up and dont look back, believe me, when you are in the "system" time will fly and you will get to know lots of lovely people who are going through exactly the same as you.......KEEP TALKING.....A PROBLEM SHARED IS A PROBLEM HALVED

Good luck & wish you all the best........always here if any queeries (start your pelvic floor exercises NOW!)

Wackertod

Hello David, thanks for your reply and advice. My situationed changed 2 days ago. After deciding on surgery my bone scan came back showing 3 hot spots on bones  , so I was told surgery not an option. My biopsy said no spread to lymph  and no metastasis,  so one is wrong!! Hospital can see the issue and now saying further PET scan required.! Everyone is saying 2/3 months for good level of recovery so I'll stay with the surgery if it is still offered. 

Ps I've never eaten so much fruit, reading a lot about diet pre treatment. Best wishes  Steve