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 the 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.
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).
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.
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.
Since my last update my PSA has fallen from 14.0 to 11.0 in November of 2009 and remained at that level in March 2010. Where it goes from there is anyone's guess.
At the November 2009 PCa consultation and bladder examination I was given the usual general anesthetic. All signs of the bladder cancer had disappeared but I did develop a severe case of edema along with all the other side effects from the anesthetic, plus a feeling of incredible weakness. My GP prescribed Lasix and Aldactone ( Spironolactone ) to control the Edema. Subsequently, after withdrawal of the Aldactone because it together with all the other drugs I take caused a very low blood pressure, I developed Gynecomastia. I subsequently learned that Aldactone also acts as an anti-androgen and it was this that led to it. The gynecomastia has finally disappeared and at this date I have no further discomfort from it.
As regards the cat in my last update, I am afraid it is becoming a little obese. My wife and I decided that we should live it up while we could so we went on a cruise. On our return we felt so fit and well that we decided we would go on another cruise and are now booked for one in October. To hell with whatever ails us.
It is interesting to note that since my last update my PSA continues to fall except for a minor hiccup. The readings are set out below:
Nov 27th 2009 11
Mar 16th 2010 12
Nov 9th 2010 9.5
May 3rd 2011 7.7
The rate of decline has slowed but I am not worried and unless the readings suddenly start to rise I propose to do nothing about it.
In my last update I mentioned that I had been prescribed Aldactone together with Lasix to try to combat severe edema and abandoned it after a week. This had some repercussions because the March 2010 PSA report included a comment that treatment for PCa had been noted.The Urologist immediately concluded that I had gone elsewhere for treatment and I was immediately declared persona non grata. It took some talking on my part to convince him otherwise and it needed production of the part used packet of tablets to finally convince him.
The last PSA report I received contained the following comments:
In men aged 80 - 89 years (I am 84)the median PSA is 1.6ug/L The total PSA within the age related reference interval but above the median may be associated with an increased risk of prostatic neoplasia. If indicated suggest review PSA status in 12 months with free/total PSA ratio.
I have been using the same laboratory for many years and they know my medical history very well and these comments seem to me to be completely unnecessary.
So if any stay-at-homes who are feeling a bit stale and who are reading this and feel in need of a break I can thoroughly recommend a sea cruise to blow away the cobwebs and give you some get up and go. I believe this wholeheartedly and have booked us on two more cruises this year.
Since my last update in 2011 when I stated that my PSA at that time was 7.7 I had an extended break from PSA testing because my PCa review is linked to the usual cystoscopy associated with bladder cancer and this latter review has been extended to six months but this time because of other health problems and cruising it was extended to 9 months. When I received the PSA report I was very pleased to see my PSA had continued to reduce and the reading on 23 February 2012 was 3.2. My Urologist was delighted with the result but could give no good reason why it should continue to reduce. He did ask my permission to write up my story as an exceptional case. I gave him my permission.
Despite my other health problems I am looking forward to the beginning of the next cruising season if I can find a suitable destination to take off again as I feel it gives me a further lease of life despite the fact I have to get on and off the ship in a wheelchair.
Since my last update my PSA rose to 5 then in March this year it had reduced to 4. It will be interesting to see what it will be when next it is read. The 14th anniversary has now passed since diagnosis and although I am starting to slow up somewhat from the effects of two other health problems but at age 85 plus my only concern is getting aboard ship in six weeks time.
It was rather stupid of me at my age to rely on memory. When I read my latest update I realised the dates of PSA readings were suspect so I referred back to the original Lab reports and for the record I have set out below the report dates and the readings:
23/02/12 - 3.2
30/04/12 - 5.1
17/08/12 - 4.3
I received an unpleasant surprise when the pathology report showed that my PSA was 7 up from 4 six months previously. Then I noted the test had been done using a different method so I shall consult with my Urologist on 26th March and see if he thinks a further PSA test in the near future is warranted to see whether this test was a one off. I will keep you informed.
Well the results of the last PSA test are in and the reading was 11 ng/ml up from 7.8 on the previous reading. It would appear that the rate of increase is speeding up slightly. In the 7 months to the previous test the rate of increase was 3.5. In the period from that test until this current one the increase was 3.2 for four months. I have to date had no reaction from my Urologist other than to wait and see.
This suits me because at 86 I am not going to sit around worrying about what might or might not happen so my wife and I are booked for two cruises over the next four months.
I finally got round to having another PSA test which came in at 16 on 10th February 2014 up from 11 on 24 July 2013. It would appear that overall it is a slow and steady increase which will not stir my Urologist one little bit nor me either. One thing which is a bit worrying is a new sensitive spot on my sternum a little above where the previous one is located and which radiates low grade pain on odd occasions. This one together with the old one will be the subject of a scan next month. I will wait and see what the results are
Over the last period since my last update my PSA has risen steadily since my last update to 32 on on 19th January 1915. This prompted my Urologist to ask for a bone scan among other tests. I do not know the results of these tests but the bone scan showed that the cancer has metastasized to my spine, pelvis, ribs and sternum. The latter has intensified from an area in the middle of the sternum to the full length and at times it reminds me very forcefully that is is there. Hence my being now being treated with ADT2 and a backup of radiation if the pain gets any worse and continuous.
Ater nearly 17 years I feel fortunate that I have gone the distance without too much difficulty and lasted so long.
Unfortunately my annual cruises are coming to an end due to anno domini catching up with me and my wife. So the last one which ended on 28th February will have been our last.
I am afraid that since my last report when I had stated that the PCa had spread to my skeleton I have had a session with my urologist every quarter with my PSA riding rapidly to 40 at which point he stopped the Casodex and excused himself from further treatment and recommended that I consult an oncologist who immediately placed me on Zytiga and Prednisone and continued the quarterly injection of Zoladex. I am due to see him after a series of blood tests, bone scans and ultrasound next month.
I have to say though that I feel no different than before, there is no pain which everyone is expecting but I do feel tired all the time which is one of the side effects of Zytiga. At my age I am not unduly worried about my departure from this life as I feel I have had a good innings and for that matter better than a lot of other poor souls.
Since my Urogolist passed me over to an Oncologist because my latest body scan showed many bone mets the Oncologist has changed my medication from Casodex to Zytiga but the Zoladex injection remains. He also referred me to Palliative care in case pain develops. In the first three months treatment with Zytiga my PSA has dropped from 48 to 23. I have another blood test later this month and it will be interesting to see whether the improvement continues. Despite it being over 18 years since diagnosis and the rapid increase in the number of bone mets I have had no pain except at a very low level and for a very short period of time. The Palliative Care people think there is a possibility I will have no pain which would warrant their attention but they are nearby and will come to me if needed.
Much has happened since my last update. My Urologist continued the ADT2 treatment until it was obvious in late 2016. PSA was 30 it was obvious that this treatment was no longer effective. My Urologist decided that I should be better treated by an Oncologist who decided that Zytiga was the best treatment for me and this was commenced immediately. PSA level commenced to fall until mid 2017 when it started to rise again rapidly. The Oncologist decided when PSA had reached 23 that the treatment was no longer effective and stopped treatment altogether except for the quarterly injection of Zoladex. His parting words were "you have had a good innings and at your age (90) you should be content". My care was passed to pallative care. Both the Oncologist and the people at pallative care claim I will have no pain and so far have had very little.
In recent days I have had periods of extreme weakness which my GP has declared as the beginning of the end. I have been expecting such news and have held the view that whatever will be, will be. So don't cry for me Argentina!
John's e-mail address is: jcol3100 AT bigpond.net.au (replace "AT" with "@")