YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

GOLD

John Coleman and Merrill live in New South Wales, Australia. He was 72 when he was diagnosed in October 1998. His PSA was 27.4 ng/ml, his Gleason Score was 7 and he was staged T3bNxMO. His choice of treatment was Hormone (ADT) followed by EBRT (External Beam Radiation Therapy). Here is his story:

After diagnosis which was confirmed by biopsy I was told by the Urologist that the Gleason score was 7 and that I had the option of two courses to follow - Surgical castration or chemical castration and that surgery was not an option. In addition to what treatment was available etc I was bluntly told that I had five years to live. A cheery message in view of the fact that I had been diagnosed with Aortic Aneurism at ther same time the PCa was first detected.My bone scan by the way was negative. Not knowing any better I opted for the hormone route followed by EBRT. I was given Androcur 50mg daily which over the next four months reduced my PSA from 27.4 ug/L to 1.5 ug/L

At this stage the Urologist decided that I was ready for Radiation treatment which commenced in February 1999 and I was subjected to 33 sessions over the next six weeks. The following PSA reading was 0.5 ng/ml and was read on a half yearly basis over the next three years when it had rerached 3.5 ng/ml. During this time I had joined some internet support groups with a view to learning something about PCa and its treatment. On my next visit to the Uro Iasked him what he intended to do about my rising PSA and he told me that he would recommence Hormone treatment when my PSA reached 200 ng/ml.

This was not in accordance with what I had learned and I decided to get a second opinion. I found it very difficult finding a GP who would give me a referral for a second opinion. On the third attempt I found one who did give me a reference to a Urologist at the Urology Clinic at St. Vincents Hospital, Sydney. In May 2003 I had a consultation at St Vincents and found that the Urologist there had vastly different ideas to the gentlemen on the Central Coast where I live. In short time I underwent a bone scan which revealed that I had rib mets. Immediately he saw the results I was put on Casodex and Zoladex.

Results were evident almost immediately as will be seen from the following PSA results -

May 2003 3.5
Aug 2003 <0.1
Nov 2003 <0.1
Feb 2004 <0.1
May 2004 <0.1
Aug 2004 <0.1 At this stage I went off medication

Feb 2005 0.3

Jul 2005 1.0

Nov 2005 1.7

Mar 2006 2.5

Jul 2006 3.3

Oct 2006 4.0

This was the last PSA reading taken. I expect to go back on ADT when my PSA reading goes above 5 (soon I think)

In March 2006 I developed bladder cancer and from now on PCA consultations and bladder cancer consultations will be joint affairs. The next visit is scheduled for 3rd April when a biopsy will be done on a suspicious spot in the bladder.

I apologise for not having the individual readings prior to going to St. Vincents. They are all with the previous Uro and I have had to rely on memory. The dates and PSA readings given for the initial period stand out very clearly in my memory.

If I have learned anything during this time it is

The importance of having a full annual medical checkup after age 50 - this would have probably avoided the necessity in my case of treatment for advanced PCa and all its side effects.

Learn all about the disease and its treatment as fast as you can,

Get second opinions if there is any shadow of doubt about what you are being told and

Don't be afraid to argue the toss with your medical advisors. In most cases they will not like it but its one way of putting your mind at rest.

 

UPDATED

July 2008

 

 

It is now two months short of four years since I ceased my first round of ADT and my PSA has increased from< 0.01 at the rate of either 0.7 or 0.8 every three months until it reached 10.1 in May 2008. The Urologists and I agreed that as the PSA was increasing at a steady low rate that rather than go back on the second round of ADT only when the PSA rate of increase started to accelerate.

My next PSA test is scheduled for late August. We shall see what the situation is then. We usually have a brief consultation after I come out of the light aneasthetic given me for Cystoscopy.

Other than the thought at the back of my mind about what my PSA is doing I feel fit and well ( other than the decreasing physical fitness which comes with age ).

 

UPDATED

February 2009

 

 

After my last update in which I stated that my PSA was then 10.1 there has been somewhat of an a speeding up to the increase in PSA as the last three readings were 12, 15 and 20. The goal posts seem to be receding rapidly into the distance and resumption of ADT with them.

My Urologist seems to be worried about my QOL but when I told him that the side effects to Casodex and Zoladex previously were minor to what I have read on this site and others he then said that it was the policy in Australia delay the start of another round of ADT as long as possible. He is now waiting for the next PSA reading due in April before making any further decision about my treatment. He is also treating my bladder cancer so I don't feel that I can try to find another Urologist. I shall just have to wait and see what develops.

By the way a year ago we moved from the Central Coast of New South Wales to a retirement village in Sydney to be nearer to treatment for both Merrill and myself. I can recommend a retirement village to anyone around my age if they wish to escape the rigors of owning a house.

 

UPDATED

October 2009

 

 

After reporting in February that my PSA had reached 20 the following reading three months later was 15 and three months after that it was 14. I am expecting to have another reading done in the very near future and I await with interest to see if the downward trend continues and that the high reading earlier in the year was an aberration.

Meanwhile I have recently been diagnosed with a mild case of Emphysema which is not worrying me too much at the present time but I am now beginning to believe my Vascular Surgeon who repaired my Aortic Aneurism about seven years ago that I was a walking Medical Text book and that something other than PCA would be the cause of my demise, SO I am henceforth going to enjoy what's left and blow the expense. As an old Scottish Friend used to say - blow the expense throw the cat another gold fish.

I shall keep all informed of progress in this endeavour.

John's e-maik address is: jcol3100@bigpond.net.au