CancerCompass message board discussion started by dagney66 on 3/7/2008 http://www.cancercompass.com/message-board/message/all,21773,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My father was recently diagnosed with prostate cancer and he is seriously considering HIFU.  I'm interested in hearing from any HIFU patients who have had serious side effects from treatment.  I'm particularly concerned about the possibilities of a fistula or severe (type 3) incontinence.Thanks. dagney66 Fri, 07 Mar 2008 00:00:00 GMT You can find stories from many men who have used the various treatment options including HIFU at the yananow site under mentors experiences.As with any treatment the most important aspect to provide the best chance of  good prognosis with few side effects is selection of a top doctor who has wide experience with the treatment. Johnw100 Fri, 07 Mar 2008 00:00:00 GMT Hi,I am the marketing manager for UKHIFU Ltd.  If you look at our web site we do have a comparison of the different treatment options for Prostate Cancer and you can see the advantages and disadvantages of the various treatments.  www.ukhifu.co.uk/treatment-options.htmSide effects of all treatments are well documented.  With HIFU treatments the statistics show that;Over 99% of men remain continentAround 70% of men retain erectile functionFistula effects approximately 1% of patients.If you would like to give us a call you would be able to talk to a technical advisor who could answer any further questions you may have and we can organise for you to talk to some patients about their experiences if this would be useful.+44 1761 415570www.ukhifu.co.ukHope this is usefulJessica On 3/7/2008 dagney66 wrote:My father was recently diagnosed with prostate cancer and he is seriously considering HIFU.  I'm interested in hearing from any HIFU patients who have had serious side effects from treatment.  I'm particularly concerned about the possibilities of a fistula or severe (type 3) incontinence.Thanks.   JessJ Mon, 10 Mar 2008 00:00:00 GMT  On 3/7/2008 dagney66 wrote:My father was recently diagnosed with prostate cancer and he is seriously considering HIFU.  I'm interested in hearing from any HIFU patients who have had serious side effects from treatment.  I'm particularly concerned about the possibilities of a fistula or severe (type 3) incontinence.Thanks. I had HIFU on Feb 24.  I am not incontinent, do not have a fistula and am starting to take Cialis every second day to regain sex function - seems to be working.  Only problem was the supra pubic catheter blocked after 2 days and had to replaced with a Foley catheter which was inconvenient.  When this was removed 9 days ago, I had a urinary tract infection which is being treated with a short course (10 days) of Cipro.  Other than the cost C$22,000 (there is no cost coverage in Canada), discomfort and inconvenience, seems to have been OK.  Probably better than the recovery from radical surgery.  Cyleonard Thu, 20 Mar 2008 00:00:00 GMT I  had HIFU in Feb. and have had absolutely no post-procedure problems.  Everything is responding according to schedule and I would highly recommend this procedure to anyone. RicardoB Thu, 20 Mar 2008 00:00:00 GMT I had HIFU in May of 2005- was 55 yrs old at time and other than watchful waiting, this is the ONLY treatment I would have considered- WHY, because of the high % of "problems" associated with the other protocols- Had catheter in for 8 days, resumed sexual relations with wife 10 days after removal of catheter (did not take Viagra or Cialis)- basically no problems I can report- It was remarkably free of any complications- I also did loads of research on the different HIFU machines in use- My advice is to stay away from Sonablate if you are considering this procedure- Look at the Ablatherm unit as they have what I felt is a much better, safer machine. Hope this helps DOug doughifu Fri, 28 Mar 2008 00:00:00 GMT I had HIFU treatment (Sonoblate 500) in Mexico in June of 2007 (51 years old, PSA 6.0, Gleason 3+3). I missed one day of work traveling back from Mexico on a Monday, had the the catheter removed after 17 days, and was able to have sex the next day. ISounds easy but this period of time was very uncomfortable and I worked from home the second week while I was trying to flush out my bladder and work on learning to urinate on my own again. I sleep through the night without getting up to urninate. For about 8 months it seemed that when I had to urinate, the urge was stronger. Now I don't even notice it. My quarterly PSA tests have been: 1.1, 0.8, and 0.5. There were two other men treated the same day as me and their results are very similar. Both men were 50 to 60 years old and they have not reported any complications. I've talked  17 men who have had HIFU and only one of them seemed to have permanent ED problems and more issues with his urinary tract being blocked (his followup PSA was 0.02 and he had an aggressive treatment). Several men had problems with the catheter (blockage or urinary tract infection) which were temporary, several use cialis to assist in getting erections, and two reported very minor incontinance issues that they felt were not very inconvenient. Although my information is very unscientific, every person I talked to recommended HIFU and would do it again if they had to make the choice again. I would also recommend it if you are a candidate (early stage cancer that is within the prostate. As for follow up care, your urologist should support you in whatever treatment you choose. Check it out ahead of time and find a new one if you cannot get support. Even though my urologist is completely against HIFU, he said I was his patient and his job was to support me. Funny thing was, he then told me he had a personal friend in the medical field that was flying to Germany for HIFU treatment and he had tried to discourage him as well... 2buckchuck Thu, 03 Apr 2008 00:00:00 GMT I had HIFU treatment Dec 2007. My experience  was superior. My PSA was 5.6 and my Gleason was 7 (3+4) . IThe procedure started at 7 am, and I was home by 3 pm.I had the supra-pubic catheter for over 3 weeks, and other than having very occassional discomfort from the catheter, everything progressed well. I have not experienced any urinary problems,other than urgencey, when you have to go, you have to go, but I do not wear pads, and have not had any issues, and I am able to perform sexualy without any drugs or aids.The only medication I am on is Flomax. My first post procedural PSA was 0.28 Based upon my experience, I can highly recommend HIFU, as long as your numbers are suitable for the treatment, and I suggest that one studies the various options available. I had my procedure done in Toronto, where I live, by a very reputable doctor. Robert   rochab Fri, 04 Apr 2008 00:00:00 GMT Hi , I just was doing some reading on HIFU treatment, and wouldlike my husband to go for this form of treatment. He is set-up todo the seed implants, but he really has not researched enough.He keeps second guessing. First, his UR said have the RP , thenthe RO said he would do fine with the seeds. What about the HIFUTreatment Center in N. Falls, ONT. ? It is closer for us. Hope and blessings to you. Beanie  tym2play Fri, 11 Apr 2008 00:00:00 GMT HIFU my procedure and lead up             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 orthopedic surgeon and discovered that I need to have my right shoulder’s rotary cuff repair. 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 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 quite 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 prespective.             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% of 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 to close too 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 Toronto Albatherm and after some discussion my prostate which measured 72cc had to be reduced to 40cc. This was to be accomplished by the use of hormone therapy. Dr. O 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. O 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. O changed the prescription to Avadart and I was on the combination of Avadart 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 I have given are the average of those three volumes. The prostate measurement was still too high but when I contacted Toronto Dr. O 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 retreatment.            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 I had but did not realize it was an issue. In my search 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 in only adjusted by the doctor in order to get a complete image of the prostate. After that the probe moved mechanically within a cylinder within the condom filled with cooling water. Unlike the Ablatherm which moved 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. D 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. 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 anesthetic tends to knock me out for a very long time. I contact the Maples Surgical unit, where the HIFU treatment was to take place and arranged to have the anesthesiologist contact me. That same day I received his phone call and we talked about my sensitivity to anesthetics 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 counter. 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 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 which 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 some business to have someone stay with me for the next 16 hours after my procedure. So, my treatment day remain as scheduled.            Just before the procedure I met with the doctor and the anesthesiologist 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 anesthesiologist 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 5 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. The first step of Dr. D was to measure my prostate, and low 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. The Winnipeg center did not open until February, 2008 and I had started the process of getting prepared for the procedure in October, 2007. 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. D completed the treatment but wanted to make sure that no cells were missed in the small neck of the apex. 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.            After the procedure 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 D 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. DocTV Fri, 11 Apr 2008 00:00:00 GMT Hi - I was diagnosed with PC in February 2008 at age 40.  I was leaning toward HIFU and discussed it with my Doctor.  He suggested that it was a new procedure, and although he did not advise me against it, he did suggest that I research it further.  I live in Winnipeg, and knew that the Maples Surgical Centre had purchased the Sonoblate, but I did want to be one of their first patients!How are you doing since the procedure and your posted message? I am meeting with a second Urologist tomorrow morning to discuss options.  I am considering watchful waiting, but feel that something more aggressive is inevitable - probably don't need that cloud over my head.Did you have any concerns about the treatment before having it, or do you have any now?Hope you are well.  Thanks bgwithpc Thu, 17 Apr 2008 00:00:00 GMT I was quite confident that this method is the best option. From my research I found that all the other techiques had significant side effects with which I did not want to deal. I still feel that way as I am fully continuent. Even with the problems I am managing and slowly progressing. Prostate type procedures I am realizing are a MAJOR operation that takes alot longer to recovery. I have had several surgeries on the knees, shoulders and hernia operation and all these were easy to go through recovery. Quite simple just do the few simple exercises to regain movement and mobility but prostate operations are in the middle of the urinary and reproductive systems and they have to function daily even with the major disruption. With knee and shoulder rotary cuff repair one can take it easy and favor the injured part.       Erectile function I will not know for awhile but Dr. D stated that the nerve bundles were quite visiable and separated from the prostate so I expect no problems from that end. The reason it is going to take time is that I was on hormone therapy to reduce the prostate size and the Zoladex implant in my abdomen was finally finished on April 22nd. I was supposed to get the next implant on that date.     The people in Winnipeg were good but I don't have a lot of comfort with the post operative help that I received. I almost wonder if the Toronto Sonablate HIFU might have been better. They apparently do a large number to the point that they were having trouble meeting the demand which resulted in the additionaly three Canadian centers being established. Unfortunately, the travelling and cost could be a problem. Here is additional update from March 29th to today April 26th, 2008.Update April 26th, 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 ½ 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 ¼ 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 without the catheter 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 totaled 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 ¼ 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 ½ 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 again 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, the 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 the 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 figure out 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 have no incontinences 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.  DocTV Sat, 26 Apr 2008 00:00:00 GMT I've been meaning to get back to this board to thank all of you for taking the time to respond to my original inquiry.  My father has found a lot of support through various groups and we were thankful for the advice received here. My father ultimately went with the Maple Leaf HIFU group in Toronto and I'm pleased to report that his PSA is negligible and he experienced only minor side effects.  He says that the catheter was definitely the worst part of the experience, but I figure that's a small price to pay to eradicate cancer.  The staff up there was great and I'm glad we had the chance to access the technology in Canada.  It's crazy that HIFU isn't available in the US yet.  I just think about how many men are missing out on this option because they can't afford the price.  Again, thanks to all of you for your time and support and my best wishes to you all.  dagney66 Thu, 24 Jul 2008 00:00:00 GMT