Hi i was diagnosed in SEpt. 2007. Psa was 1252 i'm still going now so take heart you young guys as i'm 78. I've been on the only thing that would slow things down i.e Zoladex psa went down to 21 last year but then went up to 61 at xmas taking casodex as well now and my psa is 25. I've been ok up till now but I'm getting some bad days and i've even gone off my Guinness (whats the world coming to). Still take every day as it comes and be positive.Good Luck to all.

hi paul

my partner was diagnosed age 61 with stage 3 psa 44. locally advanced affecting the seminal vesicles. he is in the STAMPEDE trial and drew the chemotharpy and zometa arm of the trial. he has now completed chemo and radiotharpy and has monthly zometa plus 3 monthly prostap. he is doing fine just very tired and stamina has not really returned since his treatment. Like you he had very few symptoms and biopsies and scans were clear. It has been worth being part of the trial as he is monitored so closely but at times the treatment has been exhausting.  my partners cancer was gleason 9 so aggressive and so we felt it best to thow all we were offered at it. So far so good and aat our last consultation they were hoping he is cured. Good luck with your treatment . There is no reason why you should not do just as well.

Linda

Linda,

many thanks for the very encouraging reply. I realise all cases are different, but your partner's situation sounds remarkably similar to my own.

Am now waiting to find out which 'arm' has been selected for me.

Glad to hear things seem to be going well, despite the tiredness.

Best wishes,

Paul

Paul - welcome to the club nobody wants to join. I too have PCa T3 M2N1 G9

I wish I had known about the STAMPEAD trial, knowing what i know now I would have jumped at the chance if I had known. I'm annoyed i wasn't told.

As others have said the extra close monitoring is well worth happening; having to wait between appointment for 3 months in my case is just too long - you wonder how you are doing.

The one thing to remember about PCa is that it progresses relatively slowly. So don't panic - you have time to consider your options, so my advise is learn as much as you can, from MacMillan, Prostate-Cancer-Charity, and CancerresearchUK websites . Information is power.

best wishes
Mal

Hi Paul,

My Husband was diagnosed 3 months ago after a rectal exam because he was having severe back pain and trouble with urinating.  He had also lost a lot of weight but because he had always had variable weight I wasn't too concerned. He did not tell me he had trouble urinating and I thought it was arthritis from his employment.

The blood test showed 271 3 months ago and after consultation  and a biopsy the Gleason score was 8- agressive and the CT scan  showed cancer at the advanced stage and in his bones. All samples contained the cancer. The Ct scan also showed sever arthritis in his lower back.

He stopped work completely and the consultants, nurses and the macmillan nurses have been fantastic both on a medical level and a personal and professional level and gave us detailed information about the treatment options. We also get regular visits from the district nurse team and they have been very helpful in recommending aids. He was placed on oral hormone therapy immediately and we are on 3 monthly injections and pain killers. We have been told that he will have these indefinitely.

He was given the option of a chemo trial and might still be given that option. He turned it down because while he is on the trial, they will be unable to remove the catheter which is a bit of an incumbrance.

He was offered an MRI but refused to do it. I did everything I could to persuade him it was in his best interests and he may still have it. It was recommended because it would enable them to see where the cancer is in his back and where the arthritis is.

He tried 2 really strong painkillers but because of the side effects went back to standard ones . He has now put on a stone in weight and has some good days and some bad days. He doesn't sleep well  however has improved and does not have as much pain. His energy levels are poor and generally can't do a lot and if he does sleeps all the next day. Keep a positive attitude and make plans.

The best I can suggest is that it is a waiting game and it takes time for the treatment to take effect.

Just sleep, eat, rest, take the medication and yes meet people there are a number of support groups around on the prostate cancer web site and if you can get hold of the pamphlet which we were given by the hospital it will tell you all you need to know.  Hope this helps

It was a great shock for my husband to be diagnosed with this illness, also for me, our children and grandchildren to know how ill he is. However since he started the hormone therapy he has improved so much. The postitive is we can now "live" with this awful illness. Kelvin says he would love to be given an indication of time scale so he can plan what is ahead, this I understand. However  as a nurse I know that is impossible, but understand his thinking. I though feel that a timescale would in some ways make "living for the day" impossible. What happens when the designated time comes closer? Do you then accept it and give up? Yes we could get angry that he was not diagnosed at a stage that could have cured him. Women get the opportunity for scanning for breast cancer, there is plenty of information re testicular cancer, why is it not the norm to scan for Prostate cancer, especially in men who have trouble urinating?????? However getting angry and being bitter gets you know where. We have to accept it has happened and enjoy every day. Sylvia

Hi Kelvalin

I wont bore you with all my health problems but if you wish you can read my profile.

I was equally devastated when told I was suffering from Prostate Cancer with bony mets which was widespread and they could do nothing to help me. This was on

16th feb 2010. I eventually got a bone scan on 28th April and MRI scan on 04th May. My P.S.A. was772.5. I was 74 and in all that time the Cancer word had never been uttered in relation to my health. I had problems urinating in 2003My G.P.

sent me to see a Consultant Urologist...he said I had a Benign Enlarged Prostate

and prescribed a drug Alfuzosin said if I took a tablet each morning I would be able to live a normal life. I receievd no further checks. Last Oct I had severe Lumbar pain and ended up taking Morphine. I enterd hospital on the 07th Feb

2010 and they came along and told me I had advanced Prostate Cancer which

is widespread and there was nothing they can do except commence HT

Casodex & Zoladex implants... so far I have had 3 x 3 monthly implants and

my P.S.A. is now 89 which is still very high but reducing slowly.

I am angry and bitter that the Medics did not detect my Cancer in time to save me and If I had n`t been taken to hospital suffering from Constipation I would still be walking around with undetected P Ca today!

The reason they don`t test men over a certain age is partly due to the Cost

involved and  also because they are not 100% certain that P.S.A tests are

accurate in detecting whether Cancer is present.

Kindest regards,

Alex (amunro36)

Hi there,

my partner is in the STAMPEDE triial. He was stage 3 gleason 9 so aggressive and PSA 44. Drew chemotherapy and zometa arm. Finished chemo and then radiotherapy. he now just has prostap and monthly zometa. Doing really well so far although a bit tired but back at work. We are gradually getting our life back now. I am sure you will benefit from the close monitoring the trial offers- let us know how you get on.

best of luck.

linda