NOTE: COLIN'S REMINDER MAIL BOUNCED IN JUNE 2007 SO HIS STORY HAS NOT BEEN UPDATED.
I HAVE BEEN TOLD THAT HE PASSED ON AT ABOUT THAT TIME- BUT NOT, IT SEEMS FROM PROSTATE CANCER.
NEVERTHELESS IT IS A STORY THAT SHOULD BE READ.
It has been assumed by many that my support of Cryotherapy must have been based on my personal experience of Cryo, but I'm sorry to disappoint those who believe that for it is just not true!!
When my EBRT (External Beam Radiation Therapy) failed six years ago and when subsequent PSA rises confirmed the failure without doubt, I took stock of the situation. I discovered that when radiation fails it leaves behind a higher Gleason Score thus a more aggressive cancer.
The radiation proctitis which accompanied the radiation, plus the rectal bleeding, plus the impotence, plus partial incontinence, convinced me that EBRT for me was "for the birds".
With the passage of time (3 years) and PSA increasing, some action was indicated to try and at least slow down the process. This was when I discovered that one of our major Cancer Hospitals in Ontario (Professor Joe Chin in London) was very quietly doing Salvage Cryotherapy, which was not approved by the Medical Council as primary therapy but would be covered on a limited basis at some teaching hospitals for procedures like Salvage.
I looked into it, discovering Fred Lee in the process, and found that he was having success with primary Cryo. I also discovered such luminaries as Gary Onik and Duke Bahn, all very highly respected men in the field, and decided to seek the salvage procedure with NO EXPECTATION OF CURE!! I felt that it might retard the tumor growth and give me more Quality time and it certainly did. In addition I was most pleasantly surprised by the simplicity and speed and lack of morbidities such as I had experienced following Radiation. It was done almost while I waited. In and out in two days (first time). My radiation took almost seven weeks and approx 2,300 miles of traveling to and from the hospital, and months of real trial afterwards and finally years of morbidity, even until today.
I was not surprised when my PSA started to rise again slowly and in the ensuing year I had two biopsies with Donal Downey in London each of which reported "no evidence of malignancy" but I knew that the PSA did not lie, and when I was offered endocrine therapy by Dr Chin, I said NO because I had seen several of my fellows in our Support Group who all had failed radiation and had gone straight on to Lupron etc. They did not enjoy a great QOL.
While visiting the AUA Convention in Chicago in April of 2003 I visited the Endocare display and was very taken by the advances in Technology (I am an Engineer)and also of the applications to other diseases such as kidney and liver and also the promise of Cryo one day for breast cancer.
I met a Canadian Urologist, Dr Ronald Sorensen, who practices in both Canada and the USA, and I was very impressed by the man and his enthusiasm. I discovered that he was Principal of the International Prostate Centre in Windsor, Ontario and was doing primary Cryotherapy in both Canada and the USA. This was not a formal consultation but merely a very informal discussion. Since primary Cryotherapy for PCa is not the standard of care in Ontario (not paid for by the Government Health Plan) he was offering it on a patient pay basis for the sum of C$ 9,600 or about US$ 7,000 (the price in the US is in the region of US$ 35,000) out of which he had to pay the anesthetist and the hospital for use of OR and buy the Cryoprobes and Gases, so he was not getting rich in the process; but this was information which I received sometime later.
I asked him to look at my digest and tell me what he thought .He did so and offered to do another biopsy. The biopsy, which was done several weeks later, revealed some prostatic tissue with a Gleason Score of 7. He pointed out to me that another Cryo would only be successful if the cancer was contained to the capsule.
I asked Dr Chin to send me to Dr Sodee at Case Western in Cleveland for a Prostascint Scan and he initially refused since he was not convinced of its efficacy. I contacted June Gobern of Cytogen in Princeton and asked what I had to do to get Prostascint installed at Western Ontario. As a result I contacted Dr Al Driedger of Nuclear Med and in conjunction with him and Dr Chin we arranged a Conference at UWO with Dr Mike Manyak of George Washington U in DC. As a result of which Prostascint was installed at the Nuclear Med Dept and I had the first Scan! This was rather vague and suggested that there may be some uptake in the seminal vesicles, I personally was convinced that the cancer had in fact moved out, and Dr Sorensen concurred that it was very possible.
Since my previous experience of the procedure had been so benign by comparison and had provided several more years of Quality time, I decided that I would ask for the second Cryo! Before that took place I had the privilege of witnessing Cryotherapy on a friend whom I had described Cryo to.
The second Cryo was even better than the first one since I was in and out the same day and apart from a little discomfort and a continuation of the incontinence, I felt fine and could not complain.
I asked Dr Sorensen if he would look at my problem with incontinence, and as a result I was dilated and then had a urethraectomy. Unfortunately, this resulted in acute retention, and subsequent catheterization. Several attempts to get back to normal were unsuccessful and I had to continue using a Foley catheter. It may be that the second Cryo was a mistake, which has caused the subsequent problem by perhaps damaging the urethra. Four months later on June 2nd had cytoscopy and urethral stricture cleared and supra pubic catheter installed by Dr Sorensen.
Since my PSA, as expected, commenced to rise, I decided to accept ADT with Zoladex and Casodex and I have been on this regimen now for three months. I am not experiencing too much side effect so far and my PSA is almost undetectable. I am contemplating going intermittent.
It can be seen that my experience of Cryotherapy has been good and has done all I expected of it. It has improved my QOL no end and it is the reason that I champion it today. I hope all of this makes some sense to some of you at least, although I can't expect that it will make sense to those men who are seeking 'cure' first, and QOL second, but that is my philosophy. Incidentally, I know quite a few men who have zero PSA; readings following Cryotherapy and who are continent and potent!
Some time ago I wrote a piece entitled "Why Cryosurgery?" which some of you may have read and it sums up my philosophy.
My second Salvage Cryo failed in Jan 04 and I went immediately on Intermittent ADT(Zoladex and Casodex)this continued for nine months with my PSA; at 0.1 where it has remained until the present (May 1, 2006)
I had a fall in Dec 04 and some months later I developed an abcess in my left groin which was drained at ER by a local Urologist. Two weeks later I noticed a similar swelling in my right groin and when pointed out to the same Urologist he dismissed it as having no relationship with the other. A second Urologist didn't know what it was and since he was off on holiday suggested that if I developed paralysis in my leg to go the ER !!
The following day my Care Nurse took one look and sent me to the ER with an abcess. Ultrasound revealed that it was the original abcess which had tunneled (a well known habit of abcesses) to the opposite groin. I had no less than five surgical procedures on my groins and this left me with unhealed wounds on both sides which has been the case for nearly twelve months.
Since I was familiar with the use of HBOT (Hyperbaric Oxygen Therapy) for diabetic patients with difficult to heal ulcers, I asked to be referred to PMH and TGH in Toronto. I was accepted into the program but have to wait until Oct 06. The normal wait is TWELVE months !!