Consultants not agreeing

I had a PSA test with a blood test suggested by my doctor for annual medication review in early February . It came back high, just told I will get a hospital appointment to see a urologist, anyway after tests and MRI scan then sudden appointment for a bone scan quick consultant appointment, I guessed they found something, so wasn't a total shock to be told I had Prostate cancer but hadn't spread to the bones, also told about options, I agreed with consultant to robotic radical prostatectomy. Cancer hadn't spread beyond the prostate but they would remove seminal vesicles. however operation is no longer done at my local hospital but carried out at a central London hospital (UCLH Westmoreland Street) . I got an appointment for last Friday 28/4 and spoke consultant number three, he stated I have PSA of 40 and Gleason score 5+4+9, A very aggressive cancer, he also stated it had spread outside the prostate and he would suggest robotic surgery as well, as well a follow up radiotherapy and hormone therapy, Ok I'm happy to go with that, but how much longer am I going to wait for the Op now?

Timeframe from anybody would be of help on this please.

9 Replies

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  • Barry, I had a radical prostatectomy in March 2012 after receiving diagnosis in October 2011. I saw consultant at my local hospital in Jan 2012 when I was offered a prostatectomy. So I waited about two months for the op. I too had the op elsewhere as they don't do it locally. Having said that, my cancer wasn't as aggressive, so it may be that you get your op quicker than that.

    Sorry to hear you got apparently conflicting information. It sounds to me like that one consultant said it hadn't spread i.e. not to BONE and the other said that it had spread, meaning it had spread "locally" i.e. to vesicles and and possibly lymph nodes. The fact that you've been offered a radical prostatectomy, removal of vesicles and probably removal of surrounding tissue suggests that they can get all the cancer cells.

    I think clinicians sometimes deliberately don't tell you everything and they think they have good reason for this, it my opinion, wrongly.

    I don't think they're informative enough and it's a good idea to find out more about it all. There's plenty of information on the internet. Don't be afraid of asking clinicians specific questions.

    After your op, there will be a path lab report on what the surgeon has removed, you will need to know what it says, e.g. the gleason score may change, and they may be able to tell if the cancer cells have grown past the edges of what's been removed - or if they've got them all.

  • I would hope you will have a radical prostatectomy within 2 weeks unless they want to pre-treat you with Androgen Deprivation therapy.

  • Hi Barry,

    Back in August 2015 my wife suggested that I had a PSA test, although I had no aches, pains or any symptoms! PSA was 5. MRI scan was clear. Biopsy showed a Gleason of 8 (pretty aggressive). CT and full bone scans given and all clear with no leakage. I had radical prostatectomy, by robotic keyhole Da-Vinci, at Kent and Canterbury hospital in November 2015. Prostate came out 'in one' I was told. No leakage. Op went well and I was in hospital for just one day. Bag for 8 days and pads for about 6 weeks. Since then the PSA has been 0.1 at 3 monthly checks. Hopefully it will be 0.1 again this afternoon when I get the telephone report about my last PSA test a week ago!

    I do not know what your local hospital is, but the whole process for me was quick and no long delays. It looks as though you are having some delays in treatment. Push the hospital for your treatment very soon!

    telboy

  • Hi telboy15 Just read your reply to barry,I am going into kent and canterbury hospital wednesday 12 2017 for surgery da-vinci robotic, and am getting more nervous by the hour who did your surgery how was your experience overall? dreading the after effects.

    joseph6

  • Sorry to hear your news Barry , I hope you manage to get the operation quickly , I think you will . The centre at Westmoreland street is very good lots of good luck Ken

    I will be having my RP on the 18th

  • Good luck with your RP, let us know how you get on, are you having your RP at Westmoreland Street?

  • Found out today from my consultants secretary that my RP is booked for 19th June !!!

  • So sorry that you are here. One important note about surgery. In years past, and still very common today, they first take out a couple of lymph nodes and check them foe cancer. If they find that the cancer had spread they will end the operation right then and there. The thought is that there is no reason to take the prostate out at that point. However, more and more studies have shown better long term outcomes by removing the primary source of the cancer.

    Based on what you said, there unfortunately is a good chance that your cancer may of spread to the pelvic area. Before your operation please discuss with your surgeon what he/she will do if they find a cancerous lymph node. I had to argue with my surgeon that I wanted him to continue with the surgery even if they find a cancerous lymph node (which they did).

    Good luck!

  • I had my RP on May 22 at the Princess Grace Hospital, London as I found out my wife's company had Bupa cover, which covered me, so I got it done a month earlier, PSA was 16, prior to surgery, very good experience really surgery was quite late in the day at 16.30 got back into my room by 21.30. I didn't have a lot of pain just the usual gas problems everyone seems to have. I went home on May 24 after a CT scan as my Consultant caught my bladder during surgery and needed to stitch the cut. (Histopathology of the prostate is a follows: Gleason 4+5 bilaterally with extension on the left hand outside of the gland at 2 places, 5mm which had a clear margin and a 5mm area which had a positive surgical margin of 1mm volume of disease 5.9mls.) if anyone understands most of that.

    I had my catheter removed 6 June after another scan and dye to fill the bladder.Nurse took out the catheter, a very strange feeling, but I held my urine with no leaks, used pads for a few days but have not bothered since, I occasionally get a sense of a dribble but it doesn't always show!!. coughing and occasionally laughing, bending over and straining to pass wind can lead to a dribble. if I had to say the worst experience of this operation was the gas in the body cavity, walking up and down the corridor and peppermint tea!! (which they gave me in hospital) helped tremendously, I will need radiotherapy for 6 1/2 weeks which I start shortly, and maybe Bicalutamide later if PSA rises.

    Any lessons from this, get a PSA check after your 50th birthday especially if prostate cancer is in the family, and Kegels, Kegles, Kegles/pelvic floor exercises are essential prior to surgery, I can't stress that enough!!!!!!, for your peace of mind and dry underwear!. Positives are I can pee freely now, pain free for the first time in quite a few years.

    Please follow Mark's prostate Cancer experience on Facebook very good support and youtube video's helps alleviate any worries you may have.

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