PROSTATE CANCER - ANYONE BEEN THERE & DONE THAT?

Hi, I have just been told by my Consultant that I have Prostate Cancer.

I am aged 58 years old and married and live a relatively fit & healthy lifestyle and have been healthy for all of my life (except having my appendix removed years ago!) so it has come as a bit of a shock to the system.

I had 3 x sets of biopsies and cancer was found in the 3rd set with a Gleason Score of 4:4, a total of 8, which is quite high.

I have just has an MRI & Bone Scan and am awaiting the results before going back to see my Consultant where we will discuss the severity of the cancer, whether it has spread outside my Prostate, my overall prognosis and the way ahead with whatever treatment(s) may be suitable.

I am staying upbeat and optimistic and I really just want to know what it is that I have and how I can try to make it better.

There is a LOT of stuff out there to read on Prostate Cancer and some of it is very scarey indeed and I appreciate that I need to know the full picture before I start to worry about "what and if", so I don't worry - yet!

I wondered if there are any gents out there who have already been through a similar experience and if so, if you have any advice or pearls of wisdom to pass onto me?

Many thanks.

  • I know from my own personal experience that a forthcoming radical prostatectomy looks like an oncoming brick wall with an inevitable collision.

    But you DO get through it and there IS life on the other side.  Very quickly you will start to put this behind you.

    The way I see it that we all "dodge a few bullets" in our lifetime - and as someone pointed out to me, my previously uncaught high blood pressure was potentially as serious as the prostate cancer, so I dodged two at once!

    By one of those strange coincidences, the surgeon who was supposed to be doing my op was in hospital at the same time as I was, fighting for his life with a severe case of pneumonia.  He was actually in a more serious situation that I was!  I'm pleased to say he also dodged the bullet and recovered, and my surgery was done by another fine surgeon.

  • I have just had a phone call saying that somebody else has cancelled their pre-op assessment, so I will now be doing mine tomorrow.

    Hopefully it should all go well and the next thing will be the op itself a week on Friday.

    The waiting is still the worst thing, but at least I am on track to get it sorted.

    I am going for a long weekend away with the missus this weekend, to get away from it all - as it will be our last chance for a while.

    Having served for 32 years in the Royal Navy, including in two conflicts, I hope I haven't already used up my quota of "dodged bullets" and that this will all go fine!

    Onwards and upwards ........

  • Having re-read what I last wrote, I sound like Uncle Albert from Only Fools & Horses with tales of his Royal Naval career!

    Who knows, if all goes well I may grow a grey beard and even start to look like him too!

    Wal

  • Latest update:

    Everything went well at the pre-op assessment yesterday and, unless something dodgy shows up in the blood samples, it is all systems go for the Op a week on Friday, 3rd October.

    The nurse said that I am very fit and healthy for my age - although I did point out to her that I do presently have an aggressive form of cancer in my prostate!

    So I am now just waiting for the next 9 days to drag (slowly) by and I am trying not to think too much about what is going to happen, as it will be unpleasant but absolutely necessary!

    Onwards and upwards ........

  • Hi again,

    The waiting time has passed by - at last - and I will be in hospital at 07.30 am tomorrow, Friday 3rd Oct, for the Op sometime tomorrow morning.

    So, everything crossed that it all goes as planned and I will hopefully be home next Monday, 6th Oct, to recover.

    Wal

  • The very best of British! I'm sure you'll be fine and by this time on Saturday morning your prostate will be history and you'll be on the road to recovery.

    Bob

  • Best of luck for tomorrow! Let us know how it went and we are keeping all our fingers and toes crossed for you!

    Lucie, Cancer Chat Moderator

  • Hi again.

    The fact that I am writing this will tell you that I survived the Robotic Prostatectomy last Friday

    My consultant said that the operation went well and they didn't find anything untoward, although only the PSA test and post-op biopsy results will confirm the whole story and my prognosis.

    I have had an "up and down" week since the Op with more ups than downs! On one day in particular (Tuesday) all of the gas that was inserted for the Op and trapped inside my gut, decided to expell itself. It took about 1.5 hours to pass and I was in absolute agony and had hot sweats and was shaking and almost fainting. Other than that experience, it is just occasional twinges of pain somewhere down below and a general feeling of dull pain and discomfort.

    I am taking Ibuprovin painkillers regularly which help to dull the discomfort and I am injecting myself every day into the gut to prevent blood-clots. As I hate needles I wasn't sure if I could do that, but it isn't too bad and only takes a second or two each day.

    My daily outfit is something else! Anti-DVT white stockings, a sumo wrestler-style jock strap to support my swollen testacles, a catheter inserted and the tubes and bag strapped to my leg, all of my pubic hair removed (the nearest I will ever come to being a blue movie star!) and finished off with 6 puncture holes across my stomach where the 5 x robotic arms and drain tube were inserted making me look like a gun-crime victim. I am quite the post-op fashion guru really!

    On a more serious note, everything seems to be healing well and I have had a visit from the District Nurse to check the puncture wound metal staples and to re-dress the drain hole and check for infection - all clear. She returns next week to remove the metal staples. Then next Friday I return to Bradford Royal Infirmary for the day as an out patient to have the catheter removed and do a trial to see how my water-works are functioning. (The thought of catheter removal brings tears to my eyes!)

    My next appointment with the Consutant came through today, it is 7 weeks after the Op on Monday 24th Nov 14 and all shall (hopefully) be revealed on the way ahead.

    I have to say that I have been impressed, and am very grateful, for all of the advice, assistance, care and nursing from all of the medical professionals involved since this journey began and I feel lucky to be given this chance to get my health back on track again. Gawd bless the NHS!

    Thanks also to everyone on this site who has passed on their hints, tips and details of their own experiences to bolster and support me when I was in a scarey place.

    Now it is just a case of letting the body heal itself over time and not going totally insane by EVER watching daytime TV which seems to consist of nothing but ancient repeats, cheap USA dramas, nasty interview-type shows where ignorant people are abused and mocked and adverts about PPI claims and compensation for being injured at work - I would much rather be back at work anytime!

    I will keep you posted as things progress.

    Wal

  • Well done, and you're over the worst.  I recall passing the gas on the night of my operation, and I could have farted for Team GB in the Olympics that night!

    The injections aren't too difficult, but they do sting for a minute afterwards, and you can't rub the site because it might cause bruises. My GP told me to avoid Ibuprofen and Aspirin whilst having the injections, since they also interfere with blood clotting. Instead, she said I could take Paracetamol and also prescribed me some Paracetamol/Codiene tablets.

    It's true about daytime television, but I found that when it came to about 2.30 in the afternoon, I got so tired that I had to go back to bed for another kip until about 5.30-6.00pm.

    I hated wearing the compression stockings so I took them off during the day and only wore them at night.  My testicles and penis turned a beautiful purple colour (my "purple ronnie") but didn't actually hurt at all and I didn't need a jock strap.

    Don't worry about the catheter removal. It hurts, but it's all over in a second. Just make sure you've plenty of pads in stock, because no one knows how much control they'll have immediately afterwards. You'll also find you'll have to relearn what it's like to have a full bladder and how to pee again. Don't panic if you don't seem to have much continence at first - it all depends on what parts of your insides are swollen and where the scabs and scars are located. You find you'll be peeing blood and scabs for weeks, but you probably won't see much improvement until all the bleeding has stopped and the scabs have been cleared away.  Over the next 6 months you should see a gradual improvement, and eventually you'll have the confidence to throw away the pads.  I had bought so many that I donated all my spares back to the urology dept of my local hospital.

    Fingers crossed that the first PSA test is <0.1.  If the surgeons didn't see any problems then the chances are that the cancer was contained and you'll never have any more problems.

    Best wishes

    Bob

    PS: I'm coming up to the 4th anniversary of my op: Dec 20th, 2010

  • Cheers Bob - 4 years for you and counting!

    I double checked what painkillers I am on and I was wrong and you are correct - I am on Paracetemol and I inject "Fragmin" into my gut each night to prevent blood-clots. It had to be the correct painkiller as the hospital prescribed it.

    It is tedious being a bit like an old, shuffling, wee-smelling geezer - due to occasional catheter "leaks" (which is what I am really!) but that phase will pass soon enough once the wounds are healing and the catheter is out and I am looking forward to being "me" again and doing what I want, when I want to do it.

    I am sleeping fairly well for about 6 hours a night and then start shuffling as it isn't that easy to sleep on your back all night, especially with that damned bag at the bottom of the bed, and my back starts to ache quite badly as I can't easily turn onto my side at the moment, but I know that will also improve as time goes by.

    All in all, I am pleasantly surprised with how it has all gone and that is due in part to the personal experiences you passed onto me and some of the things you forewarned me about - thanks mate.

    Onwards and upwards .........

    Wal