Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

    GOLD    
This member is a YANA Mentor This is his Country or State Flag

T V lives in Saskatchewan, Canada. He was 60 when he was diagnosed in September, 2007. His initial PSA was 9.90 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was HIFU (HIFU (High Intensity Focused Ultrasound)). Here is his story.

I was diagnosed with prostate cancer just by accident. I was in my family physician's office for shoulder problem and I happen to notice in her office a plastic mount of the longitudinal section of a human male pelvis. I have a Ph.D in Zoology so I was interested in what the write up was about. So, I began to read about enlarged prostates and symptoms.

I quickly began to realize that I had a prostate problem with intermittent urine flow and weak stream. I discussed these issues with her and she booked a blood test in Feb 2007. I discovered that the prostate was quite large but the PSA (prostate specific antigen) was only 3.3, not a problem. I was referred to an orthopaedic surgeon and discovered that I need to have my right shoulder's rotary cuff repaired.

After the surgery the enlarged prostate began to swell probably due to the drugs I had to take for the post operative care. The prostate closed off the urethra and within two days I was in the emergency room having a catheter inserted which I had to keep in place for five days. My family physician referred me to an urologist.

The urologist routinely had a blood test done to check the PSA and had scheduled a scoping of the prostate through the urethra within a week or two. The blood test for the PSA was done in July, 2007 Several weeks later I had the scoping done but in the interim my family physician received the report on the PSA reading from the urologist's office and contacted me saying "Your PSA is high and the urologist will likely want to have a biopsy done." After the procedure I asked the urologist about the PSA reading but he did not know anything about it. He checked with his office the next day about my results from the PSA testing that he had ordered and his office contacted me to let me know that they had booked a biopsy for me to be done in about two months.

A week after the biopsy, I received a phone call from the urologist's office informing me that I had prostate cancer and that I had an appointment the following Monday with the doctor to discuss my options. His office stated that this type of cancer was completely treatable but nothing else. When I got to the doctor's office, the urologist came into the room and asked me what treatment I wanted. I asked for information on the possible treatments and their advantages and disadvantages only to get a reply that I was informed by his office so that I could look on the internet and research what my option were. The best that I could get from him was that there are two basic types of treatments - surgical removal and radiation treatment. He would not give me any information as to which was better or what are the side effects of each type of treatment.

Due to my zoological background I was familiar with the anatomy of the male reproductive system, the accompanying structures, their positions in the body and the possible damage that could occur from any invasive procedure. I point blank asked about the differences between the two procedures with regard to problem of incontinence and erectile function but he stated that they are just the same and indicated that it was my decision. No further information would he offer me. I later found out from another urologist that radiation therapy is not recommended for a man of my age, 60 years old. Instead it is used for much older men (in their eighties) as the peripheral damage to tissue would not be a problem; assuming that these men would have died before the problems from that type of procedure would become an issue - not a pleasant perspective.

This had all taken place in September, 2007. I decided to look on the internet since that was the only thing this urologist offered and I stumbled upon the HIFU, specifically the Ablatherm. After reading the information on this procedure I decided to go with this method as it offered the least peripheral damage from the procedure. Incontinence was considered to be 5% and only type 1 and 2 incontinence which means that one would dribble a little urine when one would put a strain on the abdomen like golfing or lifting heavy weights. Erectile dysfunction was down to 20% or less when the nerve bundle sparing procedure was implemented. This procedure is always done unless there is an issue with the nerve bundles being too close to the prostate then it may not be possible. As far as I could ascertain, it seems as if all the Ablatherm procedures incorporate the nerve bundle sparing technique.

I contacted the Ablatherm in Toronto and after some discussion my prostate needed to be reduced from 72cc to 40cc. This was to be accomplished by the use of hormone therapy. Dr. Orovan prescribed Zoladex implant and Casodex pills for ten weeks but I had to get my urologist where I lived to prescribe this treatment. I was surprised and happy that my urologist agreed to do it even though he did not want anything to do with the post operative care or anything at all to do with HIFU.

At the end of 9 weeks I needed to have the prostate measured. So I arranged to get it measured and on December 20th, 2007 the procedure was performed. My prostate size was reduced to 45.5cc good but not low enough yet. So, after a brief discussion with Dr. Orovan I was to continue the Casodex treatment for one more month and get measured again. Unfortunately, the prostate did not reduce very much at all, only one cc less. Dr. Orovan changed the prescription to Avodart and I was on the combination of Avodart and Zoladex for 6 weeks.

At the end of the 6 weeks the prostate was measured and again only dropped one cc and now measured 43.5cc. In all cases three sets of measurements were taken and three volumes of the prostate were calculated. The numbers that I have given are the average of those three volumes. The prostate measurement was still too high but when I contacted Toronto Dr. Orovan mentioned that they were getting a new probe which would allow them to do larger prostates. The smallest dimension of my prostate was 38mm which was the upper dimension limit of the new probe. I decided not to go with the Ablatherm as I did not want to take the chance of having to undergo the procedure a second time. Dr. O's stats showed that he had only needed to redo the treatment in two cases in over 300 so his results were excellent but again with my prostate size at the upper limit I felt that would increase my chances significantly of needing a re-treatment.

While this was going on I continued to search the internet about treatment options and symptoms to see if something could have alerted me to the problem earlier; pain during ejaculation was one thing that I had but did not realize that it was an issue. In my research I came across the Sonablate system and was amazed that it had so many locations in the US and Mexico and even one in Toronto as well. I contacted the US HIFU and discovered that they were opening three more treatment centers in Canada: Winnipeg, Niagara and I think Montreal. The Winnipeg center was within a 7-hour drive for me and so no plane flight needed.

I was apprehensive about this technique as I got the impression that the doctor was moving the probe manually within the rectum for each treatment. After talking to the nurse at US HIFU she made me aware that the probe is only adjusted by the doctor in order to get a complete image of the prostate. After that the probe is locked down and the transducer moves within a cylinder in the probe. The probe was covered by a condom and cool water was continual flushed through the condom to cool the transducer and rectal wall. Unlike the Ablatherm which has the computer move the probe back and forth in the rectum for each plane of treatment the Sonablate probe did not move again only the transducer moved in its cylinder. Also the Sonablate system has continuous monitoring of the prostate image during the procedure so that changes can be made due to the swelling of the prostate once the burning process has started.

The nurse took my phone number and passed it to Dr. Drachenberg in Winnipeg saying he would contact me later that day. That evening I received his phone call. He spent over half an hour talking to me and my wife answering questions and giving information about the procedure. I decided to go with this procedure feeling that it was even better than the Ablatherm and it could do my larger prostate size and I was not at any dimensional limit of the probe. After reading Internet testimonials on the HIFU message site about sedation options I realized that I could get a spinal and avoid the sedation since any sedative or anaesthetic tends to knock me out for a very long time. I would not have that option with the Albatherm. I contact the Maples Surgical unit, where the HIFU treatment was to take place and arranged to have the anaesthesiologist contact me. That same day I received his phone call and we talked about my sensitivity to anaesthetics and I was able to arrange to have no sedation administered.

Before I left for Winnipeg I needed to get my prescriptions for use after the procedure as well as a pair of anti-embolism stocking - thigh high. I went to a drug store with the idea of just picking up a pair off the rack. To my surprise there were several tensions of stocking and I had to get measured in order to get the right size. I checked back with US HIFU for specifics on tension of stocking. I was to get the lowest tension - 16 to 20mm of Hg (mercury). I went back to the drug store to be measured. The drug store did not have the correct one in stock but the store would order them for me and they would arrive within a week. I still had plenty of time to wait for the order which arrived in 8 days. Now, I had everything I needed for the procedure - the four prescriptions; Levaquin, Mobi, Detrol LA and Flomax, but not the Cialis as it is to be taken after the catheter comes out and the anti-embolism stockings.

I arrived in Winnipeg by myself due to some mix up. My wife was initially going to accompany me but the person who was going to look after our place could not do it at the last minute so I contacted the US HIFU to see if it would be okay for me to come alone since I was not going to have any sedation and this seemed to be alright. Unfortunately, upon my arrival I discovered that legal issues make it essential that all patients must be accompanied by an adult. Everything is set for the procedure with a number of HIFU personnel having been flown in to assist the doctor. The administrator of Maples Surgical Center did some scrambling and was able to arrange through a business that specializes in supplying a companion for those who are having surgery to have someone stay with me for the next 16 hours after my procedure. So, my treatment day remain as scheduled.

After a short night sleep I was up at 4am in order to administer the two enemas. My procedure was scheduled for 7:30am and the booklet that they gave me stated the that enemas should be administered two hours before the procedure and in another section two hours before I leave for the hospital. Needless to say the difference in those times was about an hour so I decided that it might be best to take the earlier time. Mind you I did not sleep much that night so waking up at 4am was not a problem since I was awake already.

I arrived at the clinic at 6:45am as I was supposed to report at 7am for other paperwork and prepping. Around 7:30am I was taken into a room and where I was to strip and put on the dreaded hospital gown. These gowns are almost impossible to tie at the back. You can reach the tie strings at the neck but not the ones in the middle of the back. They also don't believe in any overlap so you are covered in the front but the gown is wide open at the back. Well, I first put the anti-embolism stockings on and then I got into the gown and the top string was actually a little easier to do up than I expected but the middle strings were low enough that I could tie them. But what was even more surprising is that lo and behold the gown actually overlapped at the back by at least 6 inches so no gapping opening where you backside was exposed when I would be walking into the operating room.

Just before the procedure I met with the doctor and the anaesthesiologist and the nurses. The doctors informed me that I must be perfectly still during the procedure as the machine takes very minute strips of prostate tissue and burns it with the ultrasound. The Sonablate machine is very sensitive to any movement as it could change the position of the probe and not hit the target prostate tissue. The anaesthesiologist stated that he would not give me sedation but because the procedure can take several hours I might have some discomfort lying in one place for so long, so all I would need to do would be to ask and he would give me a very small amount of the sedation just enough to eliminate the discomfort but should not put me to sleep. As it turned out I was on the table for five hours and did not need any sedation. I must admit that keeping still was not as difficult as I thought that it might be. I was not supposed to move even my arms.

I was placed on the table in a sitting position with my feet on the table and a spinal was administered. I laid back and Dr. Dachenberg proceeded to insert a urethral catheter. He then pumped up the bladder with several syringes of water. Once the bladder was full enough that he could feel it above the pubic bone he took a sharp pointed scalpel and punched a hole into the abdominal wall. The suprapubic catheter was a small tube about 3 to 4 mm that had a stainless steel rod with a four sided sharp point. He pushed it through the incision and into the bladder with a kind of pop then removed the stainless steel rod. He sutured the incision and also tied the thread around the catheter so that it would not move. My legs were lifted up and placed into stirrups which actually had a boot to hold my foot. The front part of the boot could be open to place the foot in and then closed with Velcro. From that point on I believe that I was naked from the waist down throughout the entire procedure but I don't know as I could not see or feel anything. I could not lift my head up anymore then the amount that I was propped up with pillows as that would change the angle of the probe entering the rectum and create problems with the procedure.

The first step of Dr. Drachenberg was to measure my prostate, and lo and behold the prostate measured 34.5cc. I was not taking any treatment other than I still had the Zoladex implant. This measurement left me with a very unusual feeling in that God wanted me to have the Sonablate HIFU system because if my prostate measured 34.5 cc I would have gone to Toronto for the Albatherm. The Winnipeg center did not open until February, 2008 and I had started the process of getting prepared for the procedure in October, 2007. A strange sequence of events!

As the procedure started for some reason I felt quite sleepy and I kind of dozed off frequently during the first hour but after that I was awake for the rest of the procedure. I thought that they must have given me something but when I asked the answer was no. So, maybe I finally relaxed and the lack of sleep from the night before caught up to me.

Now and then during the procedure I felt quite cold and started to shiver. They immediately got some warmed flannel sheets and placed them on me. The second time that this happened they had an air bag that was place over my chest against my skin and warm air was pumped through the bag. Near the end of the procedure the anaesthesiologist asked me if everything was okay as he was worried that the spinal would be wearing off. I did comment that I was experiencing twitching in my legs and wondered if it was causing any problems with the procedure. He asked the surgeon and it wasn't. Near the end of the procedure I started to feel the cooling water being pumped into my rectum and I could actually the pressure stream of water.

The Sonablate HIFU divides the prostate into six blocks in three tiers so that the treatment strips are short and much easier to get into the smaller areas of the prostate. My cancer was centered in the apex of the prostate where the capsule is thinnest and folds so some cancer cells could escape. Dr. Drachenberg completed the treatment but wanted to make sure that no cells were missed in the small neck of the apex (the end of the prostate that faces the penile urethra). He stated that the hormone treatment should have destroyed any cancer cells that might have escaped as those cells require testosterone to live but the stem cancer cells within the prostate would not die with a lack of testosterone, so, he created a seventh block (which is possible since the treatment strips are much smaller then the Ablatherm) in the very apex to clean out anything that was there. Now the procedure is completed and it is 1pm and I was placed on the table at 8am a half hour late. As they started to unstrap my legs I was to their surprise able to lift my legs and remove them from the stirrups.

After the procedure I went to the recovery room to have some antiseptic removed from my belly where the suprapubic catheter was place. Within a few minutes I was able to get dressed and sit in a recliner chair until my escort arrived. I did run into some problems with pain later in the day but Dr Drachenberg and the administrator of Maples Surgical unit were keeping in contact with me. Dr. D tried to phone me the next day but I was not in the original motel room that I had stated. However, I had Dr. D's cell phone and was able to contact him and he quickly replied to make changes and prescribe pain killers for me. Even after I got home I was able to contact Dr. D and he continued with a follow up. He also made arrangements to have another urologist available in my city that I could contact if problems arose. The pain killers eliminated my pain problems within a day or two and after a week I no longer require them.

At present I am still recovering as it has only been two weeks since the procedure on March 29th, 2008.

UPDATED

May 2008

It is now almost 4 weeks since my treatment. The brochure that was handed to me before the treatment stated that I should drink between 8 to 10 glasses of water. I believed that a glass of water was 10 to 12 ounces which works out to 4 to 4 litres.

I started the first step of urinating through the penis by closing off the suprapubic catheter for 1 to 2 hours. I never reached more than 1 hour. Then I would urinate followed by emptying the bladder through the catheter. Once the stream was pretty good I started to measure the volume. The Winnipeg brochure stated that one had to eliminate 80% through the penis for 5 days and have at least 2 hours between urinations. Once that was reached I could sleep with the catheter turned off and hopefully I would start to get back to the normal number of times I get up to urinate during the night.

Unfortunately, I found that I was getting no where near the 80% but then decided to wait 2 to 8 minutes after the first urination to urinate again. The two urinations were totalled and I was frequently reaching the 80% or better. When all the conditions are met I could get rid of the catheter however the two hours between urinations were a major problem. I phoned USHIFU. My best time was about 1 hours and most times were under an hour. I talked to the nurse at USHIFU and the glasses were 8 ounce glasses not 10 or 12 ounces that I interpreted. That reduced my in take of water to 2 litres from 4 litres.

At the end of the second week I started to get pain during urination and pain across the abdomen in the area of the pubic bone. I contacted the nurse in charge of my case and she did not give me much information but only referred me to Dr D. He did not get back to me but the nurse did in 4 days. During the wait my catheter got plugged for the second time. I was off to emergency and the doctor did some manipulation of the abdomen wall as she was feeling how full the bladder was when the urine started to flow a gain through the catheter.

At home again I contacted the USHIFU to get the name of any urologist near me as the family doctor had prescribed some test which were normal so she could not determine my problem. The nurse passed me to another nurse-administer who had a list of urologists in my area. While on the phone the nurse became aware that I was a Sonablate patient and I informed her that I was not getting any support for my problems. She immediately gave me a name and phone number of a nurse in Toronto who had 25 years experience with HIFU. I contacted this nurse who is responsible for the Sonablate CANAM HIFU and got all my questions and concerns answered.

I gave her medical information on me and she told me that my prostate was so large before the procedure that I could expect some pain during urination. The prostate is still inflamed. She gave me the idea that I could get anti-inflammatory drugs as well as an anti-spasmotic, Detrol LA, to prevent bladder spasms. She also stated that I should be only drinking 48 ounces of water (6 oz. glasses) so my water intake is reduced to 1.5 litres and I am now able to reach and even surpass the 2 hour mark between urinations.

Things significantly improved, until yesterday when the suprapubic catheter plugged again. I tried to get the catheter going by drinking and manipulating the abdomen but no luck. I started to get the pain during urinations and the volume of urine decreased, frequency increase (every 10 minutes) and volume voided decreased to 10 to 15 ml. This time the emergency put in a urethral catheter which is working but now I am in the process of trying to determine what to do to replace the suprapubic catheter. I contacted the Toronto nurse and discovered that once the catheter is plugged the build up of urine in the bladder will cause the inflamed prostate to swell again reducing urine flow so that is a normal reaction.

I contacted the HIFU nurse in Toronto and she figures that there are pieces of necrotic tissue floating in the bladder that is causing the plugging. I just need to get the bladder flushed to remove this tissue and I should be okay. At the moment I am waiting to get a phone call in the next day or two from an urologist in the city who will hopefully help to sort out the problem with the suprapubic catheter getting plugged. She also stated that my being 4 weeks after the procedure that I should be able to get the catheters removed and start urinating on my own. I just hope without the catheter that there will not be any plugging of the urethra as that will create a major concern with trying to get to the hospital emergency room. I am 45 minutes away from the hospital.

I have no incontinence but do have urgency to go but that is decreasing. The urgency is common for HIFU patients so that is not a problem. I can make it to the washroom with only the odd time when some urine will flow before I get on the toilet.

Later:

The urologist Dr. C. never did phone me to give me any assistance even through the emergency doctor sent him information on me and my problem with the suprapubic catheter plugging. I finally phoned his office again today but this time to lodge a compliant about his not responding. His secretary listened and the phone back to inform me that he had not receive any information from Dr. D in Winnipeg and that he had only received the information from the emergency doctor but I was not his patient so he did not respond. A real interesting attitude towards people, this doctor has.

So as a consequence I contacted the CANAM HIFU nurse in Toronto and THIS PERSON IS A GEM as she told me to have the urethral catheter removed and keep the suprapubic catheter but turn it off. I was to go two days and nights without using the catheter. If everything goes well then have the suprapubic catheter removed.

Well, two days later was Friday and I was not having any problem with urinating through the penis so I made an appointment with my family doctor to have the suprapubic catheter removed. I get to her office and I am taken to one of the examination rooms. She comes in and after a bit of conversation I get on the examination table pulled down my pants and shorts enough to expose the catheter. She simply cuts the thread around the tube and the stitched that closes the hole in my abdomen and pulls it out. Nothing to it. I watched the whole procedure and was amazed how easier it was. I looked at the catheter end that was in the bladder and it looked like the lanterns children make with paper in grade one. The end had four strips of tube that bowed out at 90 degrees to each other and the whole thing was about 3/4cm wide.

I am now into my 7th week after the procedure and no incontinence but no erectile function as yet. I am still taking Cialis but the hormone deprivation therapy is undoubtedly creating the problem in the erection area. I suspect from reading about hormone therapies that it could take a few months to get back to normal testosterone production. Whoopee. So I will have to sit and wait.

I still have some urgency the odd time but so mild it is not even noticeable, more common when I drink a lot of water during the morning. I am back to doing everything I want except I now have to wait and schedule rotary cuff surgery on my left shoulder so that limits some activity. My first PSA is schedule for June 29th, three months after the procedure so I wait in anticipation of what the results could be. I know the PSA was 0.2 before the HIFU procedure so I am wondering what the results are going to be at the end of June.

I have been able to get into contact with Dr. Dachenberg so it seems that I will be able to contact him with any further problems or questions, so that seems to be resolved.

UPDATED

June 2008

As of June 29th it will be 3 months since my Sonablate HIFU treatment. The PSA reading is less than 0.1. However, the Androgen Deprivation Therapy that I was on for 6 month to shrink the prostate for the treatment has according to my urologist atrophied and probably destroyed most of the Leydig cells which are interstitial cells that produce the testosterone. I had a testosterone test with the PSA test and my level of testosterone is less than 0.69 nmol/L (normal range is 5.8 to 28 nmol/L) Needless to say I have no erectile function at all--nothing. The lack of testosterone will also cause the PSA to be very low almost zero so my PSA looks good on the surface and it looks like the cancer is gone. However, the lack of testosterone can be causing the low PSA by preventing the cancer cells from growing and producing the PSA and not the fact that there is no cancer. There is some consolation in that if there is any cancer, that did escape through the apex of the prostate, it should die because there is no testosterone in my system.

I am continent but I do have the odd time with some degree of urgency to urinate but I can control it. Within the last couple of weeks I have started to experience a mild cramp near the anal area--prostate--and sometimes runs along the urethra just when urination starts. It is not painful just uncomfortable. It started slowly with occasional occurrences but now it is every time. I contacted my urologist Dr. D who did the HIFU and I have an appointment to see him in mid August. I will let you know what I find out after the appointment.

UPDATED

August 2008

I went to Winnipeg for my scheduled appointment at the Manitoba Prostate Cancer Center for August 13th. As it turned out Dr. Dachenberg's office had to reschedule my appointment for Tuesday, August 12th. I showed up at the cancer center and within a matter of 10 to 15 minutes I was shown into an examination room.

Dr. D. came in and I explained to him that I was experiencing some pain at the beginning of urination. It started in mid June and was mild, but over the course of the next two month the pain increased slightly but the frequency of urination also increased and in addition there was an increased urgency at times. Before mid June I was getting up at night about 3 times but now it has gotten to be 4 to 6 times and even as high as 7 times - almost every hour or less. The volume of urine voided each time decreased to 100 - 150ml from 200 - 250ml. He told me that there could be a build up of scar tissue on the bladder sphincter that could cause this problem. He asked me if he could take a look. I was hoping that he would scope out the urethra to find out why I was having this problem, so obviously I agreed. He immediately went out and arranged for a room for the cystoscopy.

The nurse came in and took me to the changing room to change into the dreaded hospital gown, however she told me to wear two - one normal position and the second backwards with the tie in front thus covering the wide open part at the back. I was then escorted into the procedural room. This was interesting. I had the cystoscopy done in Saskatchewan and the operating table was in fact a chair with stirrups. I sat down in the chair between the two stirrups and then put each foot into the stirrup, so my legs were wide apart and my gown was lifted to my chest. The doctor did the examination while standing between my legs. In the Manitoba Prostate cancer clinic I lied on a bed and the gown was lifted up but after the cleaning the area with antiseptic I was covered with a sterile operating blanket that had a hole in it to expose the penis. The nurse also injected a numbing gel into the urethra which was not done in Saskatchewan. The doctor stood at the side of the bed to do the examination.

During the time the nurse was prepping me I talked to her about the differences between the provinces in the cystoscopy and then asked about biopsies. It was interesting to note that the prostate biopsies done in Manitoba involve freezing the prostate using an injection like that of freezing one's tooth at a dentist's office. In Saskatchewan they don't freeze the prostate but simply fire those needles through the rectal wall into the prostate and you feel everyone to them - at least I did. In Saskatchewan the biopsy was performed by a radiologist not the urologist but in Manitoba the urologist performed the procedure.

During this time that I was talking to the nurse she was cleaning the pubic area including the penis and it dawned on me that we are carrying on a nonchalant conversation when I am lying here all exposed and it did not bother me. I remember having a hernia operation using a spinal rather than general anesthesia. There were about five nurses and doctors in the room and I was uncovered from my ribs to my knees and left there while they were getting the antiseptic ready to clean the area. I was to say the least very uncomfortable with the thought of being exposed. I had to force myself to concentrate on the conversation with the anesthesiologist. But now ironically it did not bother me. I have been poked and prodded so much in those areas that men don't want to be poked and prodded that one seems to lose all modesty or become totally indifferent to it.

After Dr. D. examined the bladder and bladder sphincter he told me that everything looks good. There is no scar tissue anywhere but that there still was two lobes of prostate tissue which were soft, spongy and sloughing which is likely causing the problem. He did a DRE and there was no indication of a prostate.

I wanted to arrange to have Dr. D. to monitor me through the healing process and he was quick to agree which indicated that he had already decided to monitor me on a regular basis with appointments every three month over the next year with PSA and testosterone tests just prior to the appointment. After the testosterone starts to come back he is going to do a MRIS and biopsy as the MRIS is only experimental in Manitoba but this website seems to consider that the MRIS is a much better diagnostic tool for prostate cancer than biopsies so I wanted an MRIS as well.

The next two nights of my monitoring the frequency and the volume of urine voided gave me quite a surprise. For some reason I was back to only getting up twice in the night to void and not 3 to 5 times and the volume of urine at each voiding increase to 200ml or more.

I am very confident in Dr. Dachenberg as my urologist for HIFU and follow up treatment. It is always a worry that the doctor that you get for support and monitoring you after a treatment that is done somewhere else will not know exactly what was done or totally understands it so that it is difficult for him to make good decisions for you when problems arise. These doctors like my family physician did everything she could to help me but this is a specialty field so her knowledge is going to be limited. However, it is extremely comforting to have the doctor who performed the procedure as my support. I would highly recommend the Sonablate HIFU in Winnipeg and Dr. Dachenberg if you are considering HIFU as a treatment option for prostate cancer.

My PSA is still less than 0.1 and the testosterone is less than 0.69 nmol/L so I now just have to wait until the testosterone level starts to increase to see if erectile function is going to come back or has the ADT permanently destroyed all the testosterone production. Dr. D. says at my age that should not happen but there is no guarantee so now it is a matter of waiting.

UPDATED

October 2008

I have just received my 6 month PSA and testosterone checkups. My PSA is still less than 0.1 but the testosterone has risen to 0.92 from less than 0.69 (range 5.8 to 28 nmol/L. Not a great increase but what is important is that it is increasing. I have noticed that I have the sense of increased strength at least my muscle want to work at lifting heavier weights.

UPDATED

December 2008

Well I am back from Winnipeg after seeing Dr. Drachenberg. Everything went well. My PSA is still less than 0.1 and the testosterone is starting to rise. It is now 2.16 ng/L. I still have to go some to get into the normal range of 5.8 to 28 ng/L. The doctor did a urine flow test and an ultrasound to check to see how much residual urine was left in my bladder. The urine flow test was good and the residual urine in the bladder was almost zero, 12 ml. Actually my urine flow has increased since the HIFU treatment. The stream used to be small and with little force but now it is wide and with a strong force.

He was concerned about the lack of any erectile function for a year as it can impact on whether I get back that function or not. Getting back to normal testosterone levels after androgen deprivation therapy takes a long time and the lack of oxygen to the spongy tissue of the penis could create problems. As a consequence he gave my a prescription for Cialis 20mg as well as giving me a few free samples.

His intern did a DRE and he could not detect any prostate tissue which is good. I see Dr. Drachenberg in three months and at that time he wants to do a Transrectal ultrasound to see if there is any prostate left. If there is none then I will not have the biopsy that he had intended to give me after a year--mainly because there is no prostate tissue to sample. My 9 month PSA testing will be at the end of December. I will also get a testosterone check done as well so I will update my story in the new year.

I am getting the feeling of strength and power and that is just do to a the small amount of testosterone being produce . It is amazing that I started to get this feeling in September and at the end of Sept is when the testosterone started to show an increase and was only 0.92 ng/L. That hormone sure has a major impact on one even the small production of 0.92 ng/L. I can't get over how massive the impact that this hormone has on one and yet I have a strong zoological background so I know about hormones and their functions and impacts but the theoretical information does not come close to the actually information when I experienced the changes from lots to none and now starting to get some back again.

I have no continence issues other than a drop or two coming out now and then after urinating. Everything is looking great and no problems except the lack of erections but that I expect will come in time.

UPDATED

January 2009

I have just received the latest PSA and Testosterone result. It is now 9 months since my HIFU treatment and the PSA is less than 0.1 ug/L and the Testosterone has again doubled to 4.44 nmol/L (normal range is 5.8 to 28).

I am still taking the Cialis (20mg) 3 times a week. This month I have started to experience nocturnal erections and one was outside the time limit of the Cialis but the erections are maybe 40% or less. I think that there is likely quite a bit of penile shrinkage from not having had any erections for 13 month, but time will only tell. Nevertheless, things are improving.

UPDATED

April 2009

I have now passed the first year mark and my PSA is still less than 0.1. The testosterone level is still increasing and is 10.3 nmol/L (normal range is 5.8 to 28 nmol/L).

I saw my urologist at the end of February and I was developing decreased urine flow and the bladder would only hold 250ml. The Doctor scoped the urethra and bladder to discover a stricture developing. He immediately stretched out the sphincter using ever increasing catheter tubes with the result that my urine flow is back to normal. He gave me another drug to help calm the bladder so that I would not have to go as often and therefore store more urine in the bladder. That has also worked as I now can go 3 to 4 hours in the day between urinations and I to get up only once during the night. My urine volume ranges from 300 to 450ml.

The erectile function is improving as I get nocturnal erections but they have not come back to pre-ADT levels yet. My testosterone has only been increasing for about 9 months.

UPDATED

August 2010

It is now 2 years and 6 months since my HIFU treatment for prostate cancer. My PSA has been hovering between 0.1 and 0.2.

After a year I started to experience some urethral narrowing. It was not a big problem but urine stream had narrowed. Dr. Dachenberg performed a urethral dilation by inserting increasingly larger catheters into the penis. This stretched the urethra and created some bleeding. The bleeding stopped about 2 hours later. A few months later the urethral stricture came back but now the narrowing was more acute but not blocked. Again at my appointment Dr. D performed the urethral dilation and the nurse helping him commented about whether they were going to place a catheter in me. They did not. On my way home, a 7 hour drive, the urethra closed up completely about 4 hours into my trip. I was drinking a lot of water to keep the urethra open but that didn't work. Now, I was in some major pain and still had to travel to a couple of hours to get to a hospital. I had a catheter inserted in the hospital but they had some difficulty with the insertion. It seems that the urethra had closed down and a catheter was not easily passing through the stricture. The catheter was removed a week later.

A few months later the urethral stricture came back but this time it completely closed off the urethra. Having the catheter inserted was now even a greater problem as the stricture was creating more of a problem for the passage of the catheter, but they did get it inserted. There was quite a bit of bleeding taking place into the urine. An urologist in my city did a cystoscopy and commented that there was considerable scar tissue in the urethra near the base of the bladder. He was not willing to do anything other than a urethral dilation. I was not anxious to have that done again. There was some narrowing of the urethra and he wanted to see what was on the other side of the narrowing and into the bladder. He could not get the cystoscope through the stricture but with some effort forced it through. This caused considerable bleeding for a few hours.

About a month later now January, 2010 the stricture came back and again I was in the emergency room of the hospital. This time the nurses were not able to insert the catheter. They got another nurse to try but he inserted the catheter only part way and inflated the bulb within the urethra. Needless to say I let them know and they deflated the bulb but that did open the urethra and within a minute I was voiding again, but lots of blood. This time a new urologist saw me who had just opened his clinic in the city. I had made arrangements to see him later at his clinic and after a little discussion we decided to have an operation where he would cut through the scar tissue of the stricture and catheter me for a few days. It was suggested that I might have to do some self catheterization to keep the urethra open for awhile. I had the operation and did some self catheterization once a week for a couple of weeks after the operation.

It is now two months after the operation and everything is good. I don't have to self catheterized anymore and the urine stream is good.

UPDATED

April 2012

It has been 4 years since my treatment with HIFU for prostate cancer. Initially I chose HIFU because there were less side effects specifically low incontinence and low ED effects. However, after 4 years my present urologist has told me that HIFU is not recommended as a treatment due to so many problems showing up. When I chose to take the treatment I was given to understand the other treatment options were open to me as secondary treatments if the HIFU was not totally successful. I have now come to understand that surgery is not possible after HIFU due to the lack of distinct features for a surgeon to do anything if the cancer came back. In essence it has left the area in a similar state as that of radiation therapy. Another issue is that the HIFU treatment does not remove all the prostate tissue in many patients, which can be somewhat disconcerting for the patient.

As of April 5, 2012, I have a urethral stricture with the scar tissue in the area where the prostate was and encroachment on the internal sphincter (sphincter at the base of the bladder). The position of the urethral stricture makes it impossible for a urologist to remove it safely without damaging the sphincter and rendering the patient incontinent. After having several urethral dilations, my urologist suggested to self catheter every other day to prevent the urethra from closing. So, I am now catheterizing a few times a week using a straight catheter to prevent the urethral stricture from closing down. So far it has been working but this is only a couple of months after my last urethral dilation procedure.

Even though the HIFU treatment preserved both my nerve bundle beside the prostate, there was still some damage so that erectile function is poor.

So far, my PSA is still low at 0.2 ng/ml.

UPDATED

May 2013

It has now been 5 years and 1 month since my HIFU treatment in Winnipeg, Manitoba. My PSA has remained about 0.3 for the last 2 years with only minimal fluctuations. The PSA started at 0.1 after the treatment. My urethral stricture seems to be improving in that my Urologist has suggested that I catheter once a week instead of 3 times a week for a couple of months. If there is no narrowing of the urethra, then I could stop catheterizing altogether. Erectile function has shown significant improvement.

UPDATED

June 2014

I had my HIFU treatment in 2008 and it is now 6 years later. I am cancer free with a PSA of 0.1. I do have minor erectile dysfunction and slight urethral stricture still, but other than that, I am okay.

UPDATED

July 2015

It is now 7 years since I had my HIFU treatment for prostate cancer. I am cancer free still but I have to catheter a couple times of week using a straight catheter in order to prevent the urethra (urinary tract) from closing down. The closing down does not cut off the urine flow but severely restricts it. Urologist told me that if the urethra closes to significantly to restrict urine flow again, and this has happened a few times already, he may not be able to open it with the stretching procedure. His only choice would be to cut the stricture to open up the urinary tract. This would make me incontinent for the rest of my life, so cathetering a couple times a week is minor and far more preferable. There is some erectile dysfunction still.

UPDATED

August 2016

It is now over 8 years since my HIFU treatment. The urethral stricture still exists but it does not cause any problems as I catheter twice a week to prevent the urethra from closing down to a point that significantly reduces urine flow. I sometimes get tired of having to do the cathetering, but at least I know that if I do it, I will not need surgery to open the stricture. Surgery would cut the stricture to opne it and this would render me incontinent. I have no additional problems.

UPDATED

September 2017

It is 9.5 years since my Sonablat HIFU treatment. Nothing has changed since my last update. I still cathetered twice a week. My Urologist monitors my urethral stricture by seeing me every 6 months to check for any issues that my have arisen. There have not been any. So, everything is good.

T's e-mail address is: tv168 AT yourlink.ca (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS