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David Milburn and John live in England. He was 50 when he was diagnosed in June, 2004. His initial PSA was 3.80 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

Sometime in the Spring of 2004 I was approached by my local medical practice and asked to volunteer for screening for prostate cancer. I fulfilled the criteria of being over 50 and having a relative who also had prostate problems.

My PSA was found to be 3.88. A DRE (Digital Rectal Examination) was done and revealed nothing unusual however I was still scheduled for a biopsy and this showed a small proportion of abnormal cells in one of 15 cores.

I was referred to my local hospital in Newcastle upon Tyne where I was contacted by the ProtecT study team. They 'randomised' me for treatment and said that the computer had selected me for a radical prostatectomy. I hesitated and said I wanted to spend time on research. As a result of reading many dozens of articles on the internet I decided to refuse the RP and opt for 'watchful waiting'. The ProtecT team accepted this and said that they would still like to keep in contact with me and follow my progress.

In the intervening 5 years I have monitored my own PSA, either every 3 or 6 months. The readings have always been within the limits 1.9 - 3.8. As a natural kneejerk reaction - which many of us have - I have run the gauntlet of numerous 'treatments' varying from exercise, diet, Chinese medicine, the lot, all with no directly related effect on the PSA reading.

I have moved following retirement and been 'surveyed' by a number of practices. I have lost count of the number of ordinary GP's who have dealt with me and I have never failed to be amazed at the lack of knowledge of prostate cancer these professional show. This last week I suffered my first 'spike' when my PSA jumped from 2.4 to 3.4. The doctor's reaction was to urge me to make an immediate appointment to see urology.

I have been absent from this site for a while and am pleased to be back. It is invaluable for reminding me that there is a real alternative to the medical profession however vital and well meaning they are.

UPDATED

February 2011

I continue to have my PSA checked at the rate of once or twice per year. For the last two years the rate has settled around the 2.7 mark which is actually lower that my original diagnosis of 3.8 in 2004.

In terms of lifestyle the major change that took place in 2004 was that I quit a very stressful job and retired. Since then I have lead a fairly healthy life in that I walk/cycle and work out to a fair degree and eat a generally healthy diet with a minimum of meat. I have never smoked or done drugs but I do drink probably more that is considered good.

I still have no symptoms of the disease and am happy to be monitoring things for the moment.

UPDATED

May 2012

Yes, I've moved again, this time to rural East Anglia, and another medical practice. My last PSA; came in at 2.0. That was last November. I was diagnosed with Pca in June 2004 and this current PSA reading is my second lowest since then.

I am one of those who (don't ask me how!) can easily put the whole matter of prostate cancer out of my mind. I think of it rarely and when I do I'm comforted by the notion that there appear to be a range of treatment options out there if and when I finally feel I have to act.

I am not conscious of any lifestyle route I have taken that has impacted on my health in general and prostate cancer in particular. I can say however that I became vegetarian four years ago ( I'd never previously eaten much meat) and have recently cut down on my drinking. That has made me feel better.

I'm 60 next year and I have it in mind, should I make it to 2014 to consider another biopsy. I'm not convinced it's the right thing to do and would welcome others' comments on follow-up biopsies nearer the time.

Regards,

Dave McGee

UPDATED

February 2013

There's been a break from my last PSA check: not recommended, but, I guess, due to becoming lax about things! This Winter I contracted a virus that laid me low over the entire Christmas and New Year. When I finally got to see the doctor (whom I'd never previously met) he prescribed antibiotics for my bad chest, but seemed more concerned that I'd not made an appointment for my annual PSA test. Thus chastened I did it last week and the result has come back 2.1

I'm tremendously comforted by this, but, as I approach my ten years with Pca I wonder if I shouldn't soon be considering another biopsy. [Why? See University of Sydney publication Let Sleeping Dogs Lie]

UPDATED

March 2014

February 2014: I have a problem which first surfaced in October last year. I had trouble urinating, it was painful(ish) when I did, and on one occasion I was sure I'd passed a tiny particle of blood. The surgery ran several tests. During the bloodwork I was also asked to have another PSA done and this came in at 1.8, the lowest it's ever been. It prompted my GP (general practitioner) to observe he couldn't discover the problem of the painful peeing, that I was in otherwise good health, and even the 'alleged' PCa now seemed to be illusory! I demanded a further opinion from a trained urologist and it was discovered that I have a small stone in the bladder which, hopefully will be sorted by surgery in the near future. I'm coming up to 10 years since first diagnosis. And I'm taking seriously the advice to drink more water!

UPDATED

April 2015

Upon diagnosis in 2004 I agreed to take part in the 'Protec study' a 15 year trial which I think started in the UK around 2000. It's close to the end of its data gathering. Although I refused their computer-randomised direction to have a radical prostatectomy they nevertheless asked me to stay in touch with them and I have. I have filled in a yearly survey and they, for their part have rung me, chatted, and lent moral support. They have never judged my choice of non-treatment, or offered advice one way or the other.

My last PSA went up slightly to 2.2 but the Protec nurse urged me to be relaxed about this. She reasoned that in normal circumstances such a PSA reading would not even trigger referral from a GP. (doctor). Without wishing to sound ungrateful I sometimes wonder why I was ever selected in the first place. One way or another it's caused a lot of worry. However, I accept that I do actually have cancer and am thankful that, for the moment at least it appears to be stable.

My lifestyle remains the same: I drink too much but eat very sensibly, and practically no meat. I exercise and do whatever I can to remove stress from my life. And, I haven't been on an aircraft in six years!

UPDATED

May 2016

My last PSA was taken November 2015 and came in at a rather disappointing 3.8. This is the first time in 11 years since diagnosis that the reading has been higher than the original PSA. At the time my bloodwork was done I was on anti-biotics for a persistent cough, and was feeling generally low, made far worse by the loss of a much loved pet. I have often wondered if stress affects the PSA reading, and so when my Protec nurse rang me (I submit details of my treatment to the PROTEC study) I mentioned the heightened PSA reading and sought her advice. She counselled that practically nothing should affect the PSA and that I ought to have it checked again within six months to see if it returns to the more usual 2.0

Having lived with a prostate cancer diagnosis for nearly twelve years I'd grown more relaxed (if that doesn't sound too offhand) about things. A near neighbour of mine - 75 - has a much more advanced stage of the disease and his treatment and symptoms remind me that it's not a thing to be taken lightly.

I think it's necessary to keep objectives in mind. This year, January, I started attending a gym and am delighted with the results, weight loss and toning. Next month I plan a 120 mile walk around part of the Cornish Coast; it's something I'm greatly looking forward to.

David's e-mail address is: sendraguy@hotmail.com


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