I started out getting up and peeing four times a night and frequently through the day with sudden desperate urges to go, but hesitant and slow flow when I got there.
My GP sent me to a urologist in Jan 2009. My PSA was 9.0 ng/ml. DRE (Digital Rectal Examination) by both GP and urologist seemed normal. Biopsies (10 cores) showed no cancer.
Prescribed Tamsulosin to improve passing urine and monitor PSA over next year. February 2010 PSA now 14. Biopsies again (14 cores ) showed no cancer. Although I was passing blood in urine occasionally - with no pain.
A cystoscopy video showed bladder had been stretched for some time through not emptying fully. I was then shown how to self catheterise with disposable catheters. Used before bed could sleep right through without needing the frequent visits to the loo. Self Catheterised for about three months twice daily.
After 24 biopsies were all clear I was told that it was 97% certain I did not have a prostate cancer and that subject to having a urodynamic test, to prove sufficient bladder pressure, I could have a TURP (Trans Urethral Resection of the Prostate) to remove some of the prostate where it was restricting urine flow.
I had a TURP on July 2nd and after only four weeks I could pee up the wall and break the old school record. I went back on August 11th for follow up with urology clinic. I went alone as I was not expecting any bad news. I had forgotten that the tissue removed from the TURP was sent to labs for histology report - I remembered this just before my name was called. A young lady registrar called out my name and the first question she asked was "Is there anyone with you?" I thought right away she has something to tell me and it's not good.
I had a prostate cancer found in the TURP tissue and missed on 24 biopsies. They wanted to start aggressive treatment. I asked if the cancer was aggressive and was told I had a Gleason Score of 9. I had no idea what this meant at the time. I got a bit emotional as the news sunk in - not because of the cancer itself - but because I did not know how to, nor want to, break this news to my family - especially to my son and daughter.
It was later explained that Gleason Scores of 8-10 are highly likely to spread if untreated. So within seven days I had the full head to toe bone scan (PET) and an MRI scan.
The bone Scan was clear and the MRI seemed to show cancer was contained in the prostate. Appointments followed very quickly with a consultant surgeon and a consultant radiologist.
I chose the surgeons option of radical prostate removal, I chose this because after surgery then adjuvant radiotherapy or hormone treatment could still be given - three bites at the cherry. Had I chosen straight into Radiotherapy the surgery would not be a subsequent option. I chose a surgeon who came highly recommended - I specifically ask that he use nerve sparing surgery if at all possible- but hey they don't know until they are in there.
I had the op on September 17th and was in hospital for about 5 days. The clips and stiches from the abdominal incision were removed after 11 days and the catheter removed 14 days post op.
Side effects - incontinence yes I leaked like a sieve at first (stairs were the worst) but now have good but not full control (8 weeks post op) feel sure it will come good soon.
Erectile dysfunction - nothing going on yet but I live in hope and to be honest I look upon it this way. I have hopefully had all my cancer removed, I will be fully continent again within a few more weeks - anything beyond this will be a welcome bonus.
I am back at work, I feel fit and healthy, I am living a normal life. I have a follow up with urologists on December 8th 2010. I expect then to be told if I need further treatment.
Obviously I am very recently diagnosed and operated on and therefore my story has no longevity yet. I have been both assured and relieved to read about so many success stories on this site and I wish the best of luck to all who are on this path.
My advice is tell anyone about how the symptoms start and not to be embarrassed about going to their doctor. Tell any male friends over 50 to get a PSA check once a year. If you are newly diagnosed as the button says DON'T PANIC.YOU ARE NOT ALONE. Follow the best advice and keep your eye on the prize - life.
If anyone who has read this - Thank You.
I hope to be one of the members who can still be posting here 10 years from now.
Hi Terry, Hi to all YANA Now followers.
Following surgery in Sept 2011 I have had one year of three monthly check ups and have now dropped to six monthly. I submit blood sample one week before for PSA testing, so far all PSA results have been undetectable.
Next check up on July 4th. Fully continent but ED still same. I know now that no attempt was made to spare any nerves and a spontaneous erection is not possible. Have been offered cialis and a vacuum pump to help. Used with some success. I have a very loving and understanding partner in Ann. She has been brilliant throughout. Life, work, health all good.
All in all I am extremely grateful to the NHS and the treatment I have received every step of the way. I have been told by my consultant a Mr Philip Cornford that I have a 95% chance of having zero PSA at five years and at ten years post op. I hope he is right. Still got my eye on the prize. Good luck to all on this path.
Retropubic prostatectomy SEPT 2010, cancer only found in tissue removed from previous TURP six weeks earlier, Gleason score 9, one year of quarterly PSA tests, one year of six monthly PSA tests, last one in Jan 2013 - all tests show PSA less than .001%. Consultant surgeon who performed the operation thinks I have a 95% chance of zero PSA at five years and ten years post op. No other treatment required at this time.
Health good in all other respects. Fully continent day and night, No erectile function but I have a fabulous partner in Ann and we are both thankful for the lfe we have together. I consider myself to be so fortunate to get the right treatment at the right time - cannot praise highly enough all the staff at the Broadgreen & Royal Liverpool urology centres, they treated myself and many patients in my sight with respect and dignity and understanding when at their mosy vulnerable.
Big problem how to tell my kids when cancer was 1ST diagnosed and so many doubts and fears, each new zero PSA is blessing - one I wish for all other YANAnow followers. Good luck on your journey
Hi Terry and all Yananow followers. Sorry guys but my update is boringly normal [That's a good thing!!] Last check up Jan 14 PSA less than 0.001, the urology clinic say I can do future check ups through my GP if I want to, but I will stick with the clinic because if there are any changes then the right team are there.
I have been told I have 95% chance of zero PSA at five and ten years. But after 24 biopsies showing negative I was also told 97% certain I did not have a cancer. So I take the 95% with a slight pinch of salt. I am still delighted with current PSA status and the potential it offers.
Terry I am sorry to hear your journey may be ending, your own story is a great inspiration to others and this site will hopefully continue your good work for generations to come.
Well still boringly normal. Last PSA check at urology clinic Feb 2015 undetectable. Now discharged from clinic with future PSA tests via my GP every 12 Months. Five years post op this month, fit and healthy, fully continent, still have E.D. - small price to pay if you ask me. Celebrated 60th birthday this year, would not have seen it without the skills and dedication of the UK NHS.
Good luck to all on this path.
PSA last checked at GP in Feb 2016 undetectable. Now over six years post surgery.
Boringly normal still but healthy in all other aspects. Working hard and enjoying life.
Recently married Ann after 11 years together, very happy.
Again good luck to all on this path ...you are not alone guys.
Eddie's e-mail address is: eddiem2905 AT btinternet.com (replace "AT" with "@")