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Pete Carson and Donna live in Scotland. He was 55 when he was diagnosed in October, 2002. His initial PSA was 12.00 ng/ml, his Gleason Score was ?, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

I was 55 and was taken into hospital with severe diverticulitis ( bowel disorder). I had NO symptoms of prostate cancer. However someone (thank goodness) did a test for PSA count and discovered a count of 12.0 ng/ml. When I got home from hospital my GP called me in to give me the news. Devastated. Death was how long away ? Would I see Christmas ? Check again a few weeks later - PSA count had gone to 21.0 ng/ml.

So to hospital for a course of six weeks of daily radiotherapy and then on to hormones. I was on daily hormones (Casodex) for 3 years and the count came down to 0.01. Came the day when the specialist felt we should see what would happen if treatment was stopped. So I came off the hormones and went on with no treatment at all.

Over the next two years the count rose very steadily from 0.01 to 3.6 and was still rising. I panicked and started to pester my specialist. He assured me that this was very understandable and we would continue to monitor. [Presumably this decision was made on the basis that Pete still has an entire prostate gland which generates a 'normal' amount of PSA]. So from then until now the PSA has wandered a round the 5 mark - every 3 months I have a test done. The last 5 results over the last 15 months, have been 4.1, 4.8, 5.4, 5.8 and then down to 4.8 again. So I continue to have test every 3 months and hopefully the result will stay around the 5 mark.

Some may feel that is high - but I think stability would be great as long as the rise stops.

UPDATED

April 2011

Over the next few months after my last post - every 3 months - I had a blood test and the PSA result continued to fluctuate. It seemed to rise one reading and fall the next - up to 5.8 down to 5.2 etc. Then for the first time in recent months - it rose twice in a row and also for the first time ever - it went over 6. Panic again!

By this time the specialist - presumably fed up of me e-mailing - had given me the e-mail of his cancer nurse and so I continued to bother him instead. At that point my GP got me an appointment back at the hospital - and I had the chance to meet an absolutely wonderful Indian doctor - who really took time to explain to me in language I understood - what was probably going on. He also did a thing online - through Google of all things - which was some kind of doubling effect which takes your initial count (immediately after treatment ) and over the number of years, works out a figure. If that figure comes out under 12 months - there is cause for concern. [This seems to refer to a calculator which uses PSA doubling time to calculate the potential aggressiveness of the disease. There is a list of some of the calculators on The Palpable Prostate.] Mine was almost 46 months so he really put my mind at rest. Then having gone up two months in a row - it came DOWN two months in a row. So it now sits at 5.2. I am due the next PSA test at the start of May so I am hoping it stays the same or maybe even falls a little.

I think on reflection that I took every tiny rise as a sign of impending doom whereas I now know that is not the case. All in all much more positive now. [I wish more men understood this issue better and thus kept what has been termed PSA anxiety to a minimum. I always suggest that men read PSA 101 and my 28 Day Experiment to get some idea of how variable PSA results can be for reasons that have nothing to do with prostate cancer.]

UPDATED

May 2012

I was diagnosed in 2002 (no symptoms) and was told by the Specialist that as it was a particularly aggressive form of the cancer, they had decided on radiotherapy and then hormones.

I had the course of radiotherapy and then 3 years of hormone treatment when my PSA went down from well over 20 to 0.01.

At that point the Specialist suggested we stop treatment and "see what happens".

The count very slowly has risen over the 7 years to its current 6.4

The highest it went to was 6.6 about 18 months ago and then it went down again to 5.4

The plan now is to wait to see if it goes above the previous highest (6.6) and if it does to think again about what the way ahead should be.

UPDATED

August 2013

Well over the many months - we have watched the PSA rise very, very slowly. It had previously reached a high of 7.6 and then fell back again, so the Urologist decided to "watch and wait " and only take action if it rose again above that figure. Then I had a heart attack in June 2012 - so things got a little complicated. The fact that I was on a blood-thinning drug for the heart meant that I could not have a biopsy to check the prostate. An MRI scan showed that there was an abnormality in the lymph gland near the prostate - and the concern the was - was the cancer in the lymph gland ? So we continued to "watch and wait". Then in June this year I came off that drug so we were able to make a plan. A few weeks ago I had an MRI scan and it shows that there is an area of the prostate that looks a little suspect. Not a large area - but it seems to be there. However the scan has shown that there is every indication that the cancer has not spread beyond the prostate. Also this scan shows that the lymph gland is normal - so that fear seems to have been allayed. So the plan now is to have a biopsy in the next few weeks - and the decide what action we take then.

UPDATED

October 2013

So the MRI showed an area that looked a little suspect. The Urology Radiographer didn't think that he saw any sign - while the Oncology Radiographer did. So there followed a biopsy of 8 samples - and 2 showed signs of the cancer. I then made the trip to Glasgow's Gatnavel Hospital - and saw Prof Yeung. Basically there is a choice - Cryotherapy ( if the Prof confirms that I tick all the boxes) or hormone teatment - if not. Cryotherapy is not a guaranteed cure - and in about 10% of cases there can be rather nasty side effects. The hormones will never be a cure - but will "hold it back a while" ! So a choice to be made at some stage in the future. At the moment ? I have NO idea what to do.

UPDATED

January 2014

I have had the tests done to see if I would be suitable for Cryotherapy (freezing the prostate). I tick all the boxes and have visited a wonderful Professor in Glasgow to discuss. However in consultation with my Oncologist - I have decided NOT to go ahead with the Cryo. This is mainly because the possible side effects are more likely in men who have had radiotherapy (I have). So I am going down the path of "quality of life". We will wait to see what happens to the PSA - and monitor the "doubling time". Guidelines vary on this - some say a doubling time within a year signals the point at which action must be taken - others say 3 months. The Cryotherapy programme in Glasgow is being financed by the Scottish Government - and there is no option for FOCAL Cryo (where only the area of cancer is targeted). So the only option is total obliteration. I have read that far from being one black box - which everyone diagnosed gets - prostate cancer varies almost with every patient and every case. So one size does NOT fit all. So we will monitor - and when the doubling effect reaches the point at which action has to be taken - the option will be hormones - and this will hopefully hold it at bay for as long as possible.

UPDATED

March 2015

I cannot believe that another year has passed since I last updated. Apologies for that. My PSA continues to rise (slowly thank goodness) and is now 10.02. although I am due another 3-monthly blood test in the next week or two. The specialist has decided that if there is a doubling within a 3 month period OR the PSA rises to over 20, then we must have a think about what we do next. I have asked the usual questions - IF the cancer is still contained within the prostate - why wait until it "escapes" ? Brian - my cancer nurse - is brilliant and I can e-mail him on a personal basis. So really we are truly in a "Watch and Wait" situation. One thing I do regularly is I tune in to the wonderful world of Dr "Snuffy" Myers. He is an amazing man and he himself was diagnosed with PC - he will tell you his story. Look him up - you can subscribe (free) for his monthly videos - REALLY interesting - at no cost. Okay he is over the pond, but I love to tune in to his videos and hear what is happening in the fight against PC. I hope you are all keeping positive - my slogan for many years now has been "Upward and onward" ! Chat soon - I will try to make it NOT as long next time. Take care.

UPDATED

May 2016

Another year has passed and still not on any treatment. We are still "watching and waiting" ! The count continues to rise slowly and you just have to be confident that your "team" are keeping an eye on it too. It does feel often as though because you are doing nothing, nobody cares. But as I know now, it is not necessarily the count that is critical but the rate of rise or the "doubling effect". So I just have to put up with the worry of every three months - having the blood test and then waiting and fretting until you get the result. Wishing all my fellow fighters every good wish. Upward and onward !

UPDATED

September 2017

Well Hiya! A bit of a delay in update - apologies. The main reason is that not a huge amount has changed. It is SO horrible having to have the three-monthly blood test and then waiting for results. You phone up the Surgery and invariably the receptionist says " Your results are here, but the Dr hasn't seen them yet, so I will get the Dr to call you when he/she has!" Then you just gave to wait - and wait - and wait. That is horrible. Anyway after the count rising slowly every three months since December 2015 - at the end of July - it CAME DOWN !!!!! From 15.4 to 13.8 ! HOORAY!!! Okay I know that the PSA can go up and down all the time, but it is SO good to see a drop. So the next blood check is at the end of October. Fingers crossed. I am feeling fine, no real problems, toilet functions normal, no pains - so I remain VERY positive. Wishing you all all the best. Chat soon!

Pete's e-mail address is: p_carson AT hotmail.co.uk (replace "AT" with "@")


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