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william01

william01
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hi iam 49 years old and ive had a big operation for prostate cancer on the 6th of july last year.

ive had my prostate bladder and part of my bowel removed and i now have a colostomy bag and a urostomy bag for the rest of my life.and after all this i still have cancer because the couldent remove it all.i get 3monthly hormone ingections to control it but not cure it.and im worried sick as ive not been told mutch about the cancer that is left and how mutch is left in me at the moment.i got told by the surgieon i would only have 6month to a year if i dident get the operation thats why i went a head and got it done.but i allso got told if the injections stop working i would have a year to 3 years to live and this is scareing the hell out off me at the moment.this is why i joined the forum to speak to anyone in the same possition as my self

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    Hi, William, just wanted to welcome you.  That was a huge operation and, I imagine, quite a shock to the system.  I think what you need to do is make an appointment with either the surgeon or even your GP and get some answers about where you still have the cancer.  It really isn't good enough to leave you with this worry.  To actually give you time limits (which I don't agree with them doing anyway) means that they must know exactly where your cancer still is.  You have a right to know and, I feel, you should make sure you are told.

    With best wishes to you William.  Please come and tell usif you get your answers and good luck.I

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    Hi William,

    In my experience consultants have a habit of not giving too much information - I think there are a number of reasons for this.

    + Information overload - People are often very stressed and may not take it all in

    + People don't always want to know how serious their condition may be 

    + Risk of being wrong - why speculate when you don't have to?

    And probably a host of others too.

    My wife would often come up with a bunch of questions between appointments and forget to ask them when she saw her consultant - my job was to prompt her.

    I'd strongly advise you to sit down and make a list of questions you want answers to and take it in with you when you next see your consultant and go through them one by one.

    Remember these guys work a lot in terms of statistics - If I were in your position I would be asking questions like what percentage of people find these injections stop working after a year? after 5 years  after 10 years? - that's the sort of way that they tend to measure things like this.

    There may be other options even if the injections stop working, there may be chemotherapy options and you're fairly young and the younger and fitter you are the better shape you're going to be in for that.

    There's also the option of trials - taking one straight off the bat there this one www.cancerresearchuk.org/.../a-trial-of-olaparib-for-prostate-cancer-that-has-spread-and-got-worse-despite-hormone-therapy-and-chemotherapy-toparp

    Which is using Olaprib for people who have had prostate cancer then hormone therapy and then Chemotherapy- sound familliar?. (Olaparib is a relatively new and exensive drug that can be used to extend the life of Ovarian Cancer patients - my wife was trying to get on it) 

     

    So there are options and then more - this is a long road and you're going to be battling right down it.

     

    If I was to give you some advice it would be to work on your overall fitness - the better your overall health and fitness will be the better you'll cope with any side effects, the less likely you'll miss treatments because you're not up to it.

    And when you get those cr@p days when it all gets too much and you think "why bother" or "OMG" come on here and someone will be here.

    Oh and look both ways when you cross the road - if you're responding well and you walk out under a bus we'll all be really really cross! :c)

     

  • Offline in reply to GrahamM

    yeah thank you for all your information.unfortunatly i cand have chimo or radio treatment as its to dangerious for me because of were the cancer is.and i have a patients advocate for to ask questions for me her and my mum is going to the hospital for to get all my questions answerd for me,im just waiting for my apppointment to see all the people involved with my cancer care or lack of it at the moment.and i will do my best not to go under a bus lol lol

  • Offline in reply to william01

    :c)

     

    If you haven't already get in touch with McMillan 

    call them at the number here

    http://www.macmillan.org.uk/

    They are really good at shaking things up and getting stuff sorted out

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