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TPSA

Torbay Prostate

Support Association



Copyright ©  TPSA  2015              Registered Charity Number  -  1095734



Serving men of all ages, and their partners, through a program of support before, during and after diagnosis.



Ian Nightingale TPSA Chairman

During a routine company medical back in 2010, it was discovered that my PSA was slightly high for my age (around 4 at the age of 52). This was investigated further by having 2 Trans Rectal Biopsies (TRUS), which came back as clear and it was recommended that every couple of years I had a routine PSA test.

Early in 2019 my Father died from Bowel cancer and that got me thinking that I should get myself checked over for this and also reminded me that I hadn’t done anything about following up the PSA checks. As I didn’t have any symptoms at all it was easy to forget to do this (and I had not followed up on the recommendation to keep an eye on my PSA).

A complication was also caused as I had moved GP’s (albeit within the same health authority) and it transpired that some records had been digitised and some had not. This resulted in my GP not wanting to do a PSA test when I said I had no symptoms. Eventually he agreed and my PSA was found to be 11. The second test was carried out a couple of weeks later and by then it had increased to 13.

Living in Leicester at the time I was fortunate enough to be given 3 different treatment options :-

Now you might think having a number of choices is a good thing, however making a final choice was very difficult. There is so much information out there (and the consultants make it clear that the final choice is up to you) so it was a very confusing process.

As those of you who have been diagnosed are aware, it’s the start of what seems a never ending focus on PSA numbers, Gleason scores and staging’s etc.

In the end I created a spreadsheet with the treatment options and the side effects listed (scoring these from 1 to 5) in an attempt to make some sense of it and identifying the side effects that would have the most impact of my life style.

In early November 2018 I had a robotic prostatectomy carried out in the Leicester General Hospital. Relatively quickly I was back to my normal level of physical activity cycling and playing tennis 3 times a week. The only lasting side effect that I have to deal with is Erectile Dysfunction (but as they say where there’s a will there’s a way!!).

One of the things I found missing in helping me make my decision was a difficulty in finding people to speak to, who had already gone through various treatments to understand their experiences, their recovery, side effects etc.

Following my treatment I decided to see how I could help men (and their partners) deal with questions I had. I approached the Leicestershire organisation Prostaid (Prostate support group) to see how I could help in developing a “Buddy Scheme”.


Steve Allen, Tackle Patient Representative 

I was diagnosed with prostate cancer at the age of 59.  I could have been diagnosed earlier, but I had studiously ignored my classic urinary symptoms for nearly 2 years.  My PSA had consistently been at the upper limit of normal for around 6 years before I decided to go and get some advice.  It came as a great shock that, instead of my expected diagnosis of benign prostate enlargement, I was told I had a cancer.  I felt extremely guilty that I had potentially left things until it was too late.  My decision to undergo surgery was a ‘no brainer’ – “I have a cancer, let’s just get rid of it!”  The long term outcome has been good in that my PSA levels remain consistently low.  However I have been plagued by virtual total incontinence of urine and severe sexual dysfunction.  The former has been helped by surgery; the latter has improved somewhat with time. 

To my great embarrassment, I am also a retired doctor.  At the time of my diagnosis I was a consultant anaesthetist who had worked alongside the urologists in my hospital for over 25 years.  I, indeed, should have known better but I can understand why many men at times are reticent to go and seek help.  Being a doctor obviously helped as I could understand the ‘long medical words’ but in no way prepared me for the experience of being a patient with prostate cancer. 

By today’s standards I have probably been over-treated.  To be regretful or angry about this is totally non-productive.  I am now closely involved as a volunteer with Tackle and with Prostate Cancer UK.  I see working with both charities as being a symbiotic relationship and certainly not competitive.  Both have the same objectives for men and their families affected by prostate cancer. Through my work with them I have gained a huge amount of knowledge and understanding from the experiences that many people have shared with me over the past years. 

A year ago I was asked to take on a role as a patient representative for Tackle, including involvement with such national bodies as NICE and the National Prostate Cancer Audit.  It can, at times, be a daunting task.  At one end of the spectrum is a need to understand the often complex and frustrating ways in which government bodies and the pharmaceutical industry work.  However, my most important objective will always be to ensure that the voice of the patient is both heard and taken notice of.  I may not always be able to speak from personal involvement concerning a particular drug or treatment but can always reflect the experience and opinions of those men with whom I have already met and will continue to meet in the future.  It is a role which carries a significant degree of responsibility but also one which can result in huge rewards for the people I try to represent. 




Clive - My Story


I went to the GP in March 2017 because I constantly felt that I needed to open my bowels. The GP did a Digital Rectal Examination (DRE) to feel my prostate. He said that he wasn’t sure if there was anything amiss, asked me to have a PSA blood test & return in 3 months for another PSA test & DRE. I had no other symptoms that are often associated with Prostate Cancer.


I had the first blood test the following day (subsequently learnt that I should have waited a few days), the symptom that triggered my GP visit went away & never returned! I duly heard from the GP that my PSA was between 6&7, which, they said, was not unduly high for my age (65 at that time).


I returned to see the same GP in June, having had another PSA test. Was told that my PSA had gone down slightly ‘which was a good sign’, after the second DRE the GP said that he still wasn’t sure whether he should refer me to the Hospital or not, that he would confer with colleagues at the Hospital & if, I didn’t get a Hospital appointment, to return to him in 6 months time for a further check.


I subsequently had an out patient appointment with Urology for September.

The Consultant Urologist did a further DRE & immediately recommended a biopsy to which I agreed & it was done in the same clinic. Ten days later I returned to learn that the biopsy had shown aggressive Prostate Cancer, Gleason 9 on one side & Gleason 8 on the other. Radical treatment was recommended after further tests. Amongst the bundle of information I was given at that time was a leaflet from TPSA, so I became aware of the local support group.


The first test was a bone scan to see whether there was any evidence that the cancer had already spread to my bones – luckily that came back as no evidence. Then I had an MRI to give a clearer picture of the prostate & immediate area.


Whilst these tests & their results were awaited I started looking for more information & spoke with one of the Specialist Nurses at Prostate Cancer UK. They sent me a ‘pack’ of relevant leaflets & I found these invaluable. I tried to limit my reading to around my known situation – but it was probably the most challenging time, not knowing how far the cancer had gone & what treatment may, or may not be available.


In November, having had the two scans, I had a joint out patient appointment with one of the Consultant Urologists & the Consultant Clinical Oncologist. This felt like the BIG one & was probably decision time! In my head I had opted for surgery, as I really didn’t like the probable side effects of Hormone Therapy. However, I learnt, during the appointment, that the MRI indicated that the cancer had gone through the prostate ‘capsule’. The Surgeon said that if he did a Prostatectomy it was very likely they would recommend follow up Hormone & Radiotherapy. I asked if that was more than 75% likely & he said ‘yes’. On that basis I opted for Hormone & Radiotherapy, without surgery. The Oncologist said that I was a ‘good candidate’ for High Dose Brachytherapy, which, amongst other things, would reduce the daily Radiotherapy by 15 sessions.


I started on the Hormone Therapy immediately, had High Dose Brachytherapy, at Exeter, in February2018 & 23 daily sessions of External Beam Radiotherapy in March 2018.


I continued on Hormone Therapy until March 2020.


I struggled with the Hormone Therapy, Amongst other side effects, I had hot flushes which I found debilitating. Luckily they responded well to a medication prescribed by the Oncologist, but I didn’t like taking yet more hormones. I persevered as the Oncologist had told me that, statistically, men who continued on Hormone Therapy for 2 years after Radiotherapy had a better survival rate.


Would I have done anything differently…? Given the situation with which I was presented, I believe I was very lucky that the cancer was detected & that I went down the best route for myself. However, it would have been better to have been having annual PSA checks from age 50, so that any change could have been picked up earlier. Whilst I know that the PSA test, by itself, is an unreliable indicator of cancer, I do believe that changes in the level could have given me an earlier diagnosis, less radical treatment & possibly better prognosis.


What is to be learnt….? Until/if any more reliable test becomes available get regular PSA tests even if your GP is reluctant.


Darrell Fulford


Following a year of watchful waiting during 2008 my PSA levels tests revealed that treatment was required for prostate cancer. Although a prostatectomy was recommended I decided to research other treatments then available which I was assured was open to me. I was given a booklet entitled “Early (localised) Prostate Cancer” by the staff at the Lodge Support Centre, Torquay. Reading it I found there was a less invasive treatment known as HIFU which stood for High Intensity Focused Ultrasound.


At the time HIFU was a relatively new treatment, less invasive than others offered at the time,and did not require the removal of the prostate gland. It is a painless trans-rectal procedure requiring no surgery other than short term catheterisation. Although HIFU was a recognised NHS treatment for prostate cancer at that time (2009) most Hospital Trusts were reluctant to finance the treatment. I only discovered this after a fruitless referral to a Bristol hospital which resulted in much disappointment, frustration and time wasting. Of course some ten years or more later HIFU is, I believe, more recognised and available in the UK.


After these frustrations I decided on private treatment as I felt delays were hindering progress. I located an experienced HIFU practitioner in Antwerp, Belgium Dr Chris D’Hont. I was informed of this consultants details via an initial approach for advice from a TPSA trustee who put me in touch with a patient who had been treated in Antwerp. I understood he was the first person in the UK to receive this treatment some seven years previously . At that time I had no connection with TPSA but have remained ever grateful for that first contact.

My initial consultation was in September 2009 during which I learnt more about my diagnoses than hitherto been told locally. It was decided that I needed a three month course of hormone treatment to reduce the prostate size before the procedure.


In February 2010 I attended Antwerp for the procedure. This was to be carried out using

computerised equipment which focused the ultrasound with extreme precision, instantly and

effectively destroying the cancerous cells whilst preserving surrounding tissue. The choice was to have a general anaesthetic or a localised epidural. Knowing I would have to lie still for two hours I decided on the former. I was discharged the following day sporting a small catheter and if I wished could travel home. However my wife and I rented an apartment in Antwerp for the duration of the treatment and a week afterwards which allowed for recuperation. Following the procedure the consultant informed me it was successful and the cancer eliminated.

My consultant would have removed the catheter but suggested I retain it for the journey home. A day or so after arrival back in the UK it was removed at Torbay Hospital. I should mention here my appreciation for the invaluable help and assistance afforded me by my consultant Mr Robert Mason and nursing staff at Torbay Hospital both prior to and after the HIFU treatment.


During the holiday break in Antwerp I was able to walk and visit the local sights and on return had to take it easy for six weeks with no lifting although walking exercise was fine. During the past ten years or so I have had regular PSA tests with acceptable results and these have been forwarded to my consultant in Belgium for his records. In the medical world treatments move on at great pace but at the time of my treatment I had to meet the following criteria for this treatment to be suitable; The cancer cells must be contained within the prostate gland

The size of the prostate must be in the region of 40cc or smaller The urine flow has to meet a certain criteria or else a TURP (Transurethal Resection of the Prostate) is necessary


TPSA President Peter Hosking BEM shares some of his own personal experiences of Prostate Cancer in this short Video. Please click on image

Patients Experiences