Hello, I'm new around here ......

  • 15 replies
  • 176 subscribers
  • 288 views

.......... but already can see how useful the information, support and inclusiveness of this community will be. Thumbsup

I'm 73, married, generally in good health and reasonably fit. I guess I've been lucky so far. I now have a diagnosis of Prostate Cancer.

Background:

I was diagnosed with BPH more than 20 years ago and have been managing that with a couple of daily tablets. The symptoms I've had all along are straight out of the text book and have required periodic visits to GPs, followed by referrals and tests as necessary, I've been happily bowling along believing that I was successfully managing a benign condition. I've had many DRE's over the years. In isolation, none of them have caused concern, including the last one only a month ago. It appears that this particular "C" is a crafty little beggar and completely insidious. My elevated (for me) PSA scores came to light last summer which has culminated in my positive diagnosis at the very end of December. Happy New Year!

Here are my "stats":

Type: Adenocarcinoma

Last PSA 6.39 (on Finasteride so probably really 13 - 20?), Prostate volume 43cc Density 0.14

Biopsy core samples: 15 taken, 11 cancerous

Gleason: 4 + 3 = 7

T stage: T3a (Locally Advanced)

N stage: N0

M stage: M0

It seems likely that I will have to have a TURP (awaiting flow test and results).

I'm being started on HT (either Decapeptyl or Zoladex) straight away, continuing for up to 2 years.

I have been offered a place on a Radiotherapy trial which involves only 5 treatment visits over two weeks. As it's a trial, the scope of the treatment may or may not additionally include RT to the pelvic lymph nodes. This depends to which group I am randomly assigned. I have yet to make a decision whether or not to accept a place on this "PACE-NODES" trial.

Q: Anyone got any views / experience of this?

Otherwise, I can go the "standard route" of 20 treatments over a 4 week period.

Looking ahead:

I am feeling positive as there seems to be a reasonable probability of a good outcome. I'm sure that there will be many ups and downs and unexpected turns along the way.

I'm also sure that the knowledge, help, support and general "camaraderie" of this group will be of great help as we share our experiences, hopes, fears and successes. It's comforting to know that right here, there are many folk who've already walked these paths and can help sort the wheat from the chaff of the total information overload that hits us following a diagnosis..

Cheers and TIA for all your collective help and encouragement Slight smile

  • Hi Barney 

    So, T3a , just escaped/outside the gland.

    My thinking is , (,only my opinion), to go for original Radiotherapy tried and tested, 4 weeks.

    I have read about the shorter version but still early days 

    Also the additional nodes bit, not sure about that as not in your nodes according to the staging .

    But ,  see what others say

    Good luck

    Steve 

  • Hi  , that’s a really good question.  Our treatments have mainly advanced by brave people going on trials before us.  I really don’t know what I would do in your position, but I guess I would do some of my own research to get a feeling of the likely outcomes of each option.  I have a sneaky feeling one or two of our community will be researching as we speak!  David

  • My thinking is , (,only my opinion), to go for original Radiotherapy tried and tested, 4 weeks.

    Thanks for the reply. Yes, it's always a bit worrying being a guinea pig. I'll post later as to what I eventually decide. I've got a few weeks yet before whichever RT starts.

  • likely outcomes of each option

    I'm told that this particular trial has been going long enough to get reliable data and statistics. The claim is that outcomes are comparable i.e. statistically not worse (but you know what they say about statistics!)

  • Hello  

    A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here. I am Brian, one of the Community Champions here on the Community - yes I also have Prostate Cancer too!!

    So I started my journey as a T3sN0M0 and Gleason 7, 3 years on HT (Decapeptyl) and following a TURP operation was "promoted" to a Gleason 9!! I had the standard 20 fractions on the "Sunbed" with so far no reactions.

    I am feeling positive as there seems to be a reasonable probability of a good outcome.

    Reading your post you look like you know the score with your diagnosis and are heading towards a "Curative Pathway" so "Happy Days".

    We have Community members on the "Pace Nodes Trials" and here are some links for you:

     RE: Pace Nodes Trial 

     After effects following Pace Nodes radiotherapy 

     RE: SABR for localised prostate cancer treatment? 

    Have a look at these and see what you think.

    If you wish to have a read of my journey (I have just completed my 3 years HT last month) just click on my avatar or user name.

    So welcome, make yourself at home!!

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Also the additional nodes bit, not sure about that as not in your nodes according to the staging .

    Whether or not one gets the pelvic lymph nodes treatment is decided by the selection computer when you are accepted onto the trial. The idea apparently is that microscopic traces could have escaped into the lymph nodes but still be undetectable. It's a belt and braces. For my part, I think I'd like to get the "whole 9 yards" if I'm going that route but of course, I can't elect.

  • Ok, fair enough, I understand, 

    I presume they tell u if u don't get the nodes trial

  • Thank you. Your reply is very much appreciated. I have also started my bio and will be updating it as I go along.

    Cheers!

  • Yes, both the treatment staff and the patient know which pathway you're on. Makes sense, I suppose.

  • Hi 

    The thing that I don’t really like about a “trial” is that possibly one half will get better treatment than the other half. Ok if you’re on the side that has the greater success. I guess it all depends on what’s available overall compared to what’s available if you didn’t join a trial. The add on of lymph nodes sounds good though. 
    L