I am writing my story because of the help I received from the YANA website.
In early 2005 I asked my General Practitioner for a PSA test because I had reached the age of 57. The test came back at 10.7 ng/ml. The doctor advised that I wait for three months and then have another test. The result showed that the PSA had increased to 11.1 ng/ml. I was referred to a specialist Urologist.
On the 6th June 2005, I had a biopsy of the prostate. 25% of the cores taken were positive and my Gleason score was 7. I was advised that this was early detection and that the location of the tumour was such that nerve sparing surgery was likely.
I was given all the options for treatment and after discussion with the surgeon, my wife, members of a prostate support group and consideration of alternative means of treatment, I made a decision to have a radical prostatectomy. I had read all the literature and that there was a 2%-3% risk of problems following surgery. The surgeon assured me that in the previous twelve years he could count on one hand the number of people who had had difficulties following this type of surgery.
The operation took place on the 13th July 2005 at 1.30pm. As I began coming out of the anaesthetic, I experienced considerable pain. This continued into the evening with doctors ultimately being recalled and staff from the Intensive Care Unit getting involved. It was established that I was haemorrhaging but not seriously enough to require admission to the intensive care unit. It settled down overnight but the initial loss of blood made me very weak. The bleeding continued for ten days.
The following days in hospital were very difficult with blood and pieces of tissue from the operation site continuing to block the catheter and causing serious discomfort.
The blockages persisted for the first few days and constant irrigation was required to keep the catheter functioning. After seven days, I was released from hospital. (By comparison, another patient who had the same operation on the same day by the same surgeon was walking around the hospital ward the day after the operation and left hospital on the 4th day.) I returned to the surgeon after another week and the catheter was removed on the 27th July 2005 after two weeks. By the 16th August 2005, I was back in the hospital having a cystoscopy because I was having difficulty passing urine. Part of the operation site had not healed. A catheter was installed again to give the site more time. I had difficulty with the catheter continuing to block off resulting in me performing my own irrigation procedures.
On the 5th September 2005, I had an X-ray which showed that the haemorrhaging had caused a sac of blood to form on one side of the operation site with its only path for exit being the urethra. This was the cause of the catheter blockages. The catheter was removed.
I began passing large lumps of old blood which needed a full bladder behind them in order to push them through the urethra. However, by the 26th September 2005, I could not pass urine. I contacted the surgeon and was sent for an ultra sound. The next day, 27th September 2005, I was back in hospital for further examination under anaesthetic. There it was established that the urethral stricture was being caused by an excess of collagen or fibrosis at the bladder/urethra join which required dilation. My body simply wanted to close the urethra all together as part of the healing process. A catheter was inserted during the operation and was retained for a week. The catheter was removed on the 4th October 2005 when I had a further cystoscopy. Following the cystoscopy, I was given a catheter with a hard plastic end bent at about 45 degrees which I inserted everyday initially to help keep the urethra open by force. The plan was to slowly reduce the number of catheter insertions from daily to every second day etc. This was not the most pleasant of experiences to say the least!
In all of this, my surgeon was very concerned about continence - the more surgical interference with the site, the greater the risk of damaging the tap muscle. He was very open to me seeking alternative opinions and we arranged for another urologist to visit me in hospital. The approach of the second doctor was much more radical. He was prepared to clean the urethra out of all stricture and treat continence as a secondary problem to be fixed later even if it meant the installation of a mechanical tap. No thanks!!
I continued with catheter insertions through October 2005 to February 2006 but it was becoming evident that I was fighting a losing battle. By the 19th February 2006, the urethra was almost completely blocked. I contacted my surgeon and was admitted to hospital at 9.30pm with the plan that he would operate again the next afternoon. The nursing staff were unable to get a catheter into the bladder because of the stricture. By 4am the next day, I was unable to pass any urine at all and my operation was not scheduled until 5pm. This was one of the longest days of my life!!
The second dilation was performed on the 20th February but by the 10th March, the urethra had almost completely blocked again. A catheter was inserted. By this time, the surgeon had established that no urologist in Australia had had experience with anyone with my problems. He told me that a well respected Urologist from the USA would be attending a Urologist's Conference in Brisbane on the 30th March and my case would be discussed with him and other urologists. In the meantime, I would need to keep a catheter in place. Advice was taken from the surgeon from the US that instead of dilating the urethra, the stricture should be incised in two places and left open.
On the 4th April, 2006, I entered hospital again for my fourth anaesthetic and the incising of the bladder neck was carried out. This worked well to begin with but as some weeks went by, I began to experience a slowing in urinary flow again. By mid June 2006, it was evident that this wasn't going to work either.
I began searching the net and although I had been on the YANA website before reading about the experience of others and had searched the net for "excess of collagen" as described by my doctor, it wasn't until I typed in the words "urethral stricture" that I reached the YANA site and the experience of Joseph Smith. Joseph had had a similar experience to mine and had finally made some progress with a different procedure. I wrote to Joseph and subsequent correspondence resulted in me getting the details of his procedure and the name and telephone number of his surgeon in the USA. I had also found information on the website of Dr. Catalona and established that everything my surgeon had been doing was current practice for urethral stricture but just had not fixed the problem in my case.
Armed with new information, I arranged an appointment with my surgeon. We organised another admission to hospital and in the meantime, he agreed to contact Joseph's doctor or at least the practice.
The stricture however, was getting worse and I was admitted to hospital again around 9.30 pm on the 19th June 2006 but just like the previous occasion, it was impossible for nursing staff to insert a catheter. By this time however, I was an expert in managing catheters and asked the doctor for a hard end straight catheter which I could force through the operation site myself to relieve the bladder until the operation was performed the next afternoon. This was better than waiting for 15 hours with a full bladder!!
When I fronted up to the operating theatre, the surgeon advised that he would carry out the procedure recommended by Joseph's doctor, which was to incise the stricture in four places and inject cortisone into the area. The stricture had grown to 1.5cm in width and was very hard. Although my urinary flow is not brilliant and is still being monitored, it is now 18 months since that last procedure was performed and life is good.
What made this journey most uncomfortable was the level of pain involved. During the first weeks after the initial surgery, the pain I experienced was extraordinary. Pain continued to be a problem between procedures and since. It is only three months ago in September 2007 after more than 2 years since the initial surgery, that I have felt free of pain and am able to sit on a chair with comfort and without a cushion. Any aggravation of the site results in a slowing in urinary flow so I am cautious. I don't ride bikes for example!! However, with all the prayer I have received from so many people, I am confident that I have been healed and will not need any further intervention.
Thanks to the YANA website and Joseph's story, the urological profession in Australia has been further informed on dealing with urethral stricture. I will be ever grateful to Joseph and YANA for publishing his story and the experiences of other men around the world and would be delighted to discuss my experience with anyone interested.
Six monthly blood tests since the initial operation have revealed no trace of cancer and my erection function is slowing improving.
In response to a reminder, Len said:
I will be giving you an update and was intending to do so after my next blood test which is within the next two weeks. The last test showed a detectable result so the next one is a follow up to confirm or otherwise.
After 3½ years of undetectable PSA blood test results, the blood test I had in November 2008 returned a detectable result - 0.04. As is usual, another blood test was planned three months later in February 2009 which confirmed the detectable result and that it was stable.
Because of this stability, the next blood test will not be until August 2009 when we will see what has happened between now and then.
I feel fit and well and have not had a re-occurence of the urethral stricture that caused me so much difficulty after the initial operation. Urinary flow is not brilliant but certainly acceptable.
I have had another PSA test which showed no change to the 0.04 result produced in February this year which is great news. I have now entered by fifth year since surgery and my uro tells me that if anything is going to change further, it will most likely happen in the next twelve months.
I had another cystoscopy because urinary flow had reduced slightly and while the uro said that the urethra is narrower than he would like to see, it is very healthy. There was some benefit in having the cystoscopy because the telescope seemed to dilate the area of the anastomosis which improved urinary flow. However, I notice that flow has slowed again over the last couple of weeks but I am still able to empty the bladder without difficulty. My uro advised some years ago that I may have to have another surgical dilation but for the moment things are sweet.
I have had a further blood test and my PSA reading now is 0.03. After three readings at 0.04 which my surgeon said is a detectable result, I am delighted that the reading has reversed to a non-detectable result. Despite the difficulties I had with urethral stricture, there is plenty of hope for those who have their tumours detected early.
I am only six months away now from the initial 5 year period since the operation and to have a result like this at this time is great news.
August 2010. I have just had another blood test at the five year mark and am delighted to say that it now <0.03, in other words undetectable. The surgeon does not want to see me again now for another five years.
Urinary flow is not great but is adequate. It is all good news as far as I am concerned. There was concern that because of the size of the tumour I had that some cells may have escaped but there is no evidence. Early detection is certainly the way to go. Guys I know have been scared to have a PSA test because of my experience but it is essential for good health.
In recent months I have noticed a slowing in urinary function. Speaking to my specialist urologist again, he decided to perform a urethral dilation of the anastomosis. This occurred on the 7th February 2012 and true to form, any procedure associated with this area of my body results in discomfort in passing urine and when sitting.
Having had the dilation, I realise now that I have not been voiding properly for a couple of years. The question is whether the dilation will make any difference given my history of difficulties with utrethral stricture. I will have to wait and see what happens in the coming months.
Following the dilation of the anastomosis on the 7th February 2012, after two weeks, I had the same experience as before - the urethra started to close down again. I was almost ready to contact the surgeon again when the urinary flow began to improve and continued to do so.
I subsequently made an appointment with the surgeon. He advised me that prior to the dilation, the urethra was at about 25% of its capacity but that the stricture itself had decreased in size from the original 15mm along the urethra to about 4mm. Nevertheless, because of the surgical procedure, which my body doesn't like, there was an adverse reaction. I am pleased to say that I have not had to go back to the surgeon since then and urinary flow is reasonable.
As for the blood test, all have come back with undetectable results, which is good news.
Blood tests every six months continue to produce an undetectable result. No further issues with diminishing flow to date.
My latest blood test is showing 0.03ng/ml which is considered just detectable. [There are always trace amounts of PSA in the bloodstream, such as from the Cowper's gland. Any PSA value less than 0.1 ng/ml is considered undetectable, especially when using the "Ultra-sensitive"test -- click here for more details.] Since September 2010, I have had non-detectable results so this result is a very slight increase. I will have another blood test in two months time.
I have had two more blood tests since the last update. The first result was 0.05 ng/ml which my surgeon considers detectable. The second was less than 0.03 ng/ml which is undetectable. All is good. 10 years coming up in July 2015.
Since my last update, blood tests have continue to show undetectable results. Three weeks ago, my surgeon finally declared me cancer free. Praise the Lord!
Over the last 12 months, I have noticed, once again, a lessening in flow which is due to the early difficulties I have mentioned. Getting up at night to relieve myself had become a problem with getting started taking one to two minutes to get some relief. On 22nd April 2016, I went into hospital again to have the bladder neck incised and was cathertised. The catheter was removed at 6am the next day but unfortunately, the nurse had not deflated the balloon in the catheter properly and tried to pull it out with force which caused pain and later, I think, resulted in swelling of the bladder neck.
I drank water and tried passing urine at around 9am but was only able to pass 100ml after a huge effort. The strain caused more swelling and ultimately, I couldn't pass anything. With a full bladder and cuts in the bladder neck, the result was severe pain. At 9:30am, I had asked nursing staff to contact my surgeon which they did. He rang back after a time and gave instructions to re-insert the catheter. However, because of the swelling and after many, many attempts none of the resident nurses or doctor could get the catheter in place. The surgeon himself came at around 12:00 noon and after a time was able to get the catheter into the bladder. What a relief that was!! The previous time this happened, the doctor had to install a super pubic catheter straight into the bladder but such severe reaction after 11 years was not expected. Back in 2012, the surgeon performed a dilation which ultimately worked OK. In the past, incising has produced a better result but not on this occasion.
I am comfortable at the moment but will see what happens after the catheter is removed at the end of this week - 29th April.
Len's e-mail address is: firstname.lastname@example.org