Stories of some our group members

  • Having taken early retirement in 2007 I decided to have annual MOT’s at local GP’s which included PSA testing. Everything was fine until September 2012 when my PSA went up to 4.6 – the GP was not too concerned –in September 2013 my PSA had increased to 7.5 which resulted in another PSA test in December which showed 7.0 - this lead to an appointment at GP Care Urology clinic in Nailsea – after an examination it was decided that another PSA test be done in March 2014.
    At December meeting I requested an MRI scan but was advised this procedure not currently offered. In March 2014 my PSA was 9.4 resulting in a biopsy being done at Brockway. Unfortunately I developed Septicemia and then suffered a UTI –I was ill for nearly 2 weeks.
    In April I received two letters from Southmead-the first was for Urology outpatients where I was told that 1 of the 12 biopsies had a non aggressive cancer with a Gleason score of 3:3 – the second letter (received in same post)was for appointment with Oncology consultant who detailed the options available which were – Active surveillance, radiotherapy or removal of prostate.
    I again requested an MRI scan –which was granted-as I wanted to know if anything else was going on. I had an MRI scan in June which highlighted additional cancer but as I did not know what grade it was I requested a Template Biopsy. Of the 60 biopsies taken there were 8 showing cancer which increased the Gleason score to 3:4 and increased the grade to intermediate. Somewhat surprisingly the MDT advised that I still had the same three options as before. However, I had always thought that if Gleason increased I would opt for surgery as it had not spread outside prostate.
    I had the operation (keyhole) on 30 September. The surgeon’s report was -‘that he had performed a bilateral nerve sparing robotic assisted laparoscopic prostatectomy which was unremarkable.’
    In early December I had my ‘post op’ review. I was advised that the Histology report was good in that the cancer had not spread and had been removed during the operation, my PSA is now less than 0.2 and I have been discharged with regular quarterly PSA testing for next twelve months being all that is required.
    I am doing my pelvic floor exercises 3 times a day and am beginning to see some improvement.I still suffer leakage but control is improving and am dry at nights. I still have ED issues but am getting all the right sensations but no erection and have been put on Cialis which could help in this area.

  • In 1999 I was experiencing pain in my genitalia. A blood test revealed a PSA of 4.8 and I was referred to a Urologist who initially diagnosed Prostatitis. Antibiotics and Prostatic massage failed to cure the problem. With no further options I was given a final blood test which revealed a PSA of 5.6. This rate of change over a 4 month period was considered suspicious and I underwent a biopsy which indicated cancer at top end of the slow growing Gleeson scale. My choice at that time was do nothing and perhaps live with the pain for perhaps 10 years or have a prostatectomy and live for 25 years. I chose the latter and had the Prostatectomy. I was left impotent, with a level of incontinence which can be very depressing. I did undergo several unsuccessful procedures to cure my incontinence. Despite the setbacks I am still alive thanks to my PSA test and with advances in technology the risk of problems that I experienced have been considerably reduced.

  • It needn’t all be doom and gloom! I recently had a follow up prostate biopsy, after my first 7 years ago, with no apparent change in that time.
    It all started 20 years ago when I was fortunate enough to be chosen, apparently at random, for the ProtecT Study, which introduced me to the relevance of the PSA (Prostate Specific Antigen) test. The result of my first such test was ‘normal’, but my new awareness of the importance of the test as being an indication of the possible existence of a prostate problem made me ask my GP for regular annual PSA tests. I noticed that my urinary flow had become quite weak, and that my erections were becoming more difficult to maintain. My PSA levels grew greater, until in 2007 it rose to 8.1, at which I was sent for a biopsy which showed a small cancer of the prostate, but at the acceptable level of 6 on the Gleeson scale of slow growing cancers. I was offered options of surgery, treatment (Active Surveillance) or medication with monitoring (Watchful Waiting). I opted for the latter, since when I have been on Finasteride tablets, with regular PSA testing; these were at acceptable levels, between 2.8 and 3.5, but recently rose to 5.1. As Finasteride effectively halves the PSA reading, this equated to 10.2, hence my follow up biopsy in August 2014, resulting in a letter stating ‘your recent biopsies found nothing different from what we already know’ and putting me on active surveillance with 6 monthly check ups.
    From my experience I feel strongly the importance of regular PSA tests, even though they are considered only as an inadequate guide to prostate problems.

  • I was diagnosed with prostate cancer on the 26/9/2006 - funny how that date is etched in my memory!! I have had two biopsies both of which have resulted in a Gleason score of 3+3=6.
    My present situation is that my six monthly PSA results seem to range between 10.2 and 12.2. I see my consultant Mr Keeley (who is a no nonsense American) about once a year and his current thinking is that as a "watchful waiting" patient he does not see it as requirement to have another biopsy, although he has requested my GP to inform him if my PSA goes over 16.
    The only medication I take for my condition is "Tamsulusin" capsules to ease bladder and prostate muscles for my only symptom which is night time toilet visits.
    Obviously at present mine is a waiting game but I am a strong believer in screening for men and hope that one day it will be as common as breast screening for women.
    Update - Unnecessary Worry
    The result of my recent PSA test did not appear to be good, as it had risen from the usual of between 11-12, to 14.7
    This was an immediate worry for me and was picked up by a locum doctor who contacted the Urology department at Southmead. They came back with a date for a biopsy. (I had previously had two biopsies in 2006 and 2008, which showed a Gleason score of 3+3=6). After having this latest biopsy, I then had to wait for four weeks for the result, which was given to me as exactly the same as before, Gleason 3+3=6.
    To get this result I had to travel to Southmead to see the consultant - although the result was good, It made me think that I had unncessary worry. Obviously, if the result was bad then this procedure would be correct.
    But for a good result, surely better methods such as a letter, phone call or e-mail would have been a less stressful option.
    Cancer is a big worry and we do not need unnecessary anxiety of this form.

  • In 2008, aged 54, I was travelling to work and heard an article about Prostate Cancer on the radio. Although I had no symptoms, for some reason this triggered a thought in my mind and I resolved to ask my GP for a blood (PSA) test. This came back at about 4.5, higher than normal for my age. My GP gave me a course of antibiotics and retested a month later. The next test was slightly lower but still too high for my age, so I was referred to the Urology department at Weston hospital.
    At the hospital I wasn't given a biopsy, but was monitored for just over two years, during which time my PSA varied between 4.0 and 5.0.
    In 2010 my PSA started rising. It eventually reached 5.6 and so I was given a prostate biopsy at the end of June. This revealed a Gleason 3+4 cancer in one side of the prostate. The follow up MRI didn't reveal any significant features and I was referred to Bristol Southmead hospital for a Robotic Radical Prostatectomy. I was then aged 56.
    Unfortunately, I had problems with my blood pressure and it took several months before my BP could be brought under control. This delayed the operation, which took place on December 21st 2010. I was in hospital overnight and went home the next day, in time for a quiet and relaxing Christmas. I wore a catheter for the first two weeks, and once this was removed I had to wear incontinence pads for a few months.
    Since the surgery my PSA has been undetectably low, and I've recovered completely from the incontinence. However, I still have erectile dysfunction and I'm taking regular low dose Cialis to help the nerves recover. Surprisingly, this isn't proving to be a major issue in my life and I'm coping very well with ED. If there's no improvement in the next few months then I'm told I can go back to Weston hospital and pursue other treatment options.
  • My father-in-law died of prostate cancer, so I was aware of the disease and the dangers of late diagnosis. I heard about PSA testing in 2009, went to my GP. The GP tried to dissuade me because this test can be inaccurate and inconclusive, and results vary from patient to patient. I felt it was important to establish my current level of PSA so that a future test would have something to compare against, so I insisted on having a test. That result was 4.8, the next (3 months later) was 6.2 and I was referred to the oncology department at the BRI, who gave me some useful booklets on prostate cancer and sent me for a TRUS (Trans-rectal ultrasound) biopsy at the Brockway Medical Centre in Nailsea. It's not pleasant having a dozen holes punched in your bottom, brings tears to your eyes in fact, but it was soon over and I had no complications or infection after the event. The biopsy results came back as an early non-aggressive cancer, Gleason score 3+3.
    I was given this result by the Oncologist, who also introduced me to a prostate specialist nurse in case I had further questions. Given a choice of treatements I opted for “Active Surveilance” on the advice of the Urologist who asked me to have regular 3-monthly PSA testing via my GP surgery. Each autumn I was called into the BRI for a 2-minute interview to tell me there was no significant change and I should carry on testing. After 2 years with my PSA wobbling between 7 and 8 I had a further TRUS biopsy in November 2011, this time at the BRI. Same result. The Urologist discussed treatment options including surgery, radiotherapy and brachytherapy (not hormone treatment). The recommendation was to continue with Active Surveillance and come back urgently to Urology if my PSA rose above 10. We discontinued by mutual consent the annual time-wasting trip to be told there was nothing to do and just kept sending the 3-monthly PSA results to Urology.
    My PSA results continued between 7 and 8 for a further 2 years then started to climb, reaching 10.3 in September 2014 at which point my GP referred me back to Urology. I used Choose and Book to pick the site with the shortest delay to be seen, which was Southmead Hospital. I would have preferred to see the Urologist at his clinic in Clevedon Cottage Hospital, but an 80-day wait seemed far too long. I have an appointment for 23rd October 2014 at Southmead and await developments.