Surgery dilemma - radical prostatectomy

Hi

My husband was diagnosed with T2c NO prostate cancer 3 weeks ago following MRI and biopsies taken early May.  His PSA was 4.2 and his Gleason is 7 (4+3).  He has lesions on both sides but at the time of his MRI these were contained.  His bone scan has also come back clear.  He is listed for robotic radical prostatectomy but on looking into this we got concerned that the surgeon may not be very experienced and only does on average 2 per week, since Jauary.  His prediction for nerve sparing to achieve erections post operatively is only 10%.  This is really upsetting especially given that my husband is only 56.  We began to wonder if this is based on this particular surgeons capabilities and if a different surgeon may give a better outcome.  

To add to the distress, our local nhs hospital has still not offered a surgery date and we are now at 56 days from GP referral.  We have looked into going outside our local nhs hospital and he can get referred to UCLH but they have said this will be a brand new referral and the clock will start back on day 1.  Do we have time to wait for this?  We are looking into going private but don't have insurance so the funds would have to come from a relatively small pension pot.

We know every person is individual and we can't predict how a cancer will develop but does anyone have any thoughts on whether we are doing the right thing to divert and wait?

  • Hi tommy10. Welcome to the forum.

    Wow! It's like reading my own medical history. Same age at diagnosis, same staging, same Gleason score, and almost the same PSA, except mine was a little higher: 5.6.  My diagnosis was 8 years ago; I had surgery and my PSA has been <0.1 ever since.

    This is my personal experience and I hope it helps you to put things in perspective.

    After my diagnosis in July 2010, I had two surgery dates cancelled because my blood pressure was very high.  For the second cancellation I was actually at the hospital. I was first on the list and there were two surgical teams operating. The patient who was supposed to be second was taken to the theatre first, and I was put back to second. This meant that we had effectively swapped surgical teams. As it was, at 11 am they decided they couldn't operate on me and I was sent home.

    On the third attempt, in December 2010, the surgeon who was supposed to operate on me was himself gravely ill with pneumonia, and so another surgeon did my procedure. Fortunately we both survived, and he's gone on to save many more lives so it's a good job he pulled through. (Forum rules prevent me from naming him, but I would recommend him to anyone)

    I asked my GP's opinion about the delay and whether it would harm my prognosis. Her opinion was that a delay of some months would make no difference to the outcome, but if the delay was longer than a year, that might be a different story.

    So, despite all the planning, and despite being scheduled for a particular surgeon in whom I had complete confidence, it never turned out that way. On two occasions I was rescheduled for another team. The best laid plans of mice and men..... 

    My cancer was detected on one side only, and when I met the surgeon (the one who never did my operation) he thought that it would be unwise to spare the nerves on that side. I therefore had unilateral nerve sparing only.  On the day after the operation when the actual surgeon came round to tell me all had gone well I asked him whether the unilateral nerve sparing had been OK.  He then confided in me that he hadn't done that part of the procedure. It had been done by another surgeon under his supervision.  So even though the operation is theoreticall performed by a single named surgeon, in practice that surgeon will be training others and they'll do parts of it. 

    After the operation, I recovered continence reasonably quickly, but despite the nerve sparing my little soldier no longer stands to attention. I was able to discard my pads after 6 months and by 8 months I was confident enough to go on long rail trips with no protection at all. In retrospect, continence is far far more important than erections.

    I did try Viagra but it gave me a headache, and Cialis low dosage but it did nothing.  The vacuum pump just sucked so I gave up on that completely.  Various capsules shoved up the urethra were equally useless and I decided I'd give the injections a miss. Now, you might think loss of erections was a bit of a downer, but I'll let you into a secret.  You don't need an erection to have an orgasm, and since the surgery my orgasms are FANTASTIC. They're intense and last about 30 seconds. Wow! That was an unexpected bonus!  Obviously, intercourse is out, but with a bit of imagination there's still plenty of fun to be had.

    Reading over what you wrote, since your husband's cancer is both sides, his surgeon may consider bilateral nerve sparing to be unwise. The nerves do need to be teased away from the prostate and there is a risk of causing a local post-op spread, which you don't want. Perhaps that's why he said the chance of being able to do it safely and successfully was 10%.  

    One final thought. This is a life changing situation. I decided that I would commit to surgery and I would accept everything that happened without recrimination and regret. I would throw the dice and accept what came up. For anyone deciding to have prostate cancer treatment, I recommend you also decide that you will not indulge in recriminations and "if onlys" if it doesn't quite work out the way you'd like. 

  • Hi telemando

    Thankyou for taking the time to reply.  We had no idea that it might take so long to have the surgery, it hadn't occurred to us there may be cancellations.  Waiting an extra few weeks to be re-referred doesn't seem so bad in comparison.  I assume when you finally had your surgery it was still contained?  If so, thats really reassuring.  We know that if we change to UCLH we aren't in control of which surgeon we get but it seems that all of their team are more experienced and will have done far more cases than our current surgeon.

     If its not possible to spare the nerves then at least having a second opinion will help to accept that. It's also reassuring that if all else fails its not the end of an intimate relationship!  The most important thing is being cancer free.

    Best wishes 

     

     

  • Hi tommy10. 

    Yes, my cancer was still contained. The post surgery path report showed no spread at all.  

    Before you choose to go to another centre, at least scan this article:

    http://www.dailymail.co.uk/health/article-5808997/Meet-best-urologists-Britain.html

    It might be worthwhile finding out waiting times at a few centres to see if one of them is going to be faster.  But remember my story. Even if you transfer, external factors may mean you don't get the surgeon you expect, and even if you do get that surgeon, he (or she) may not be the one who actually does the nerve sparing; it might be a "trainee".

    I don't know who your current surgeon is (and you mustn't put his name in a public forum), but I would also say that 2 ops per week is a good average figure. Enough to keep one's hand in, but not so many that one becomes jaded.  Are you really sure that moving, with all the inherent delay, is really the right thing to do. Of course, if you've totally lost confidence then move, but I did find the additional waiting time, even though it was for medically sound reasons, an additional stress.

    If you want to talk outside of the public forum, send me a private message.

  • I had my surgery done last Friday (10th July 2020) privately.

     

    I was originally meant to have it done way back in March of this year, so as you can see I did have a long time to wait.

     

    Please feel free to as me any questions (as a patient!).

     

    I hope it all goes well for you both.