THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

March 20, 2007. Five days ago (March 15,2007) I made the decision to choose HIFU as my treatment choice in my quest to find a cure for my prostate cancer. The choice was not an easy one, nor am I certian as I write this, the correct one.

I was in the habit of getting an annual phicisal exam every three years. Now I wish I hadn't waited. My PSAhad risen from a 3.3 ng/ml in 04' to a 5.6 ng/ml now. Anyway, the family doc sent me to a urologist for a biopsy. 15 cores were taken. 10 came back with some % of cancer. All were 3+3=6 except one which was 3+4=7. At the time I thought it unfair to classify me a 7. I thought I should be a 6, but no one else saw it that way.

The local urologist spent considerable time with me on the follow up visit. He told me I had prostate cancer and a lot of it. He said that surgery was the best option for me and that surgery would cure me. The thought of being cured thrilled me. I lost my enthusiasm when he told me of the chances for sucessful quality of life afterwards. He advised me of the other types of treatment that were options e.g. radiation, cryo, ADT etc. As I was leaving his office he must have sensed my confusion. He said I had some time, but we should be aggressive, he told me to talk to other docs and said he welcomed a second opinion, and would not be upset if I chose someone other than him for my treatment. He would be there if I needed him for anything.

As I was walking out of the office the last thing he said to me was simply "google HIFU when you get home". I did that. It opened up an entirely new option. It concerned me that the treatment was not approved by the FDA. And that is why I assume, it hadn't been discussed in detail at the office.

Over the next several weeks I spent more time on a computer than I ever had in my life. I made an appointment with the local radiation oncologist. He told me that radiation would cure me. The thought of being cured thrilled me. The risk involved and chances for successful quality of life afterward did not. I then scheduled second opinion appointments with a urologist at Duke University, and another radiation oncologist at Fox Chase Cancer center in Phila.

I talked in depth to both of these highly educated men. They assured me that my cancer had a good chance of being cured. Based on their experience,and my scores, they did not believe that the cancer had penetrated the capsule. If it did, then not to a point that it could not be treated. Nothing was 100% certain. It just so happened that the doc at Duke is the same one that is heading up the clinical trial there on HIFU for the FDA. The trial had not started yet, but it soon would. He said that HIFU could cure my cancer. The thought of being cured thrilled me, this time the aspect of good quality of life existed. The doctor said I was not eligible for the trial because I was a 7 on the Gleason Scale and not a 6. He said that they petitioned the FDA to allow 7's but the FDA was running the trial with only low risk patients.

After getting all of the opinions, I decided that HIFU was for me. (Part of that may be that I was hoping that HIFU would work for me). I contacted Canada, Japan, England, Germany, and USHIFU. What amazed me the most is that the doctors thenselves, for the most part ans. my questions. Most of them assured me that HIFU would cure my cancer. One guy told me I was too young for HIFU and said RP should be my choice. That intriged me. He said, because of my age, later on down the road I would need a second treatment.

It was hard to find an unbiased opinion on which machine, the Sonoblate 500 or Ablatherm performed better. After much research I chose the Ablatherm. I am scheduled to have the procedure April 3, 2007 in Munich Germany with Dr Thuroff. I'm scared as hell! I saw my local urologist again today. We discussed in detail my options. This time I was able to have a conversation with him regarding treatment options. I told him of the path I chose. He calmed my fears a bit when he told me he thought I would do well. God I hope he's right.

I will say here that I plan to keep this blog updated. I can't help but notice that many HIFU guys say they will continue but only follow up with a couple of entries. I know that I was left guessing outcomes with a few

My wife and I arrived in Munich on March 30, 2007. What a beautiful city! We met with Dr. Chaussey on Monday April 2. I asked him about the article Dr. Murat from Lyons, France presented at the EAU conference held in Berlin the previous week. Dr, Murat published less than glowing results from previous HIFU treatments administered in France. Dr. Chaussey and Kheil calmed my fears and explained the discrepancies.

I had the HIFU procedure on Tuesday. Dr.Chaussey performed a TURP and Dr.Thuroff the HIFU. The entire process took three hours. Then it was to ICU while the local wore off. Wednesday morning found me in my room with a penile catheter AND a subpubic catheter. They were runing liquid into my bladder then out my penis. On Thursday morning they took away the liqiud feeder and penile catheter and let the subpubic catheter drain the bladder. On Friday they took out the subpubic catheter and let my penis do the work. That didn´t work too well as the hole in my abdomen kept leaking so they reinsterted the penile catheter overnight.

Saturday morning they removed the penile catheter once again, this time no leaking. About four hours after all the tubes were gone they did a flow velocity/volume check then an ultrasound of the bladder to check for residual urine in the bladder. Everything checked out just fine.I was walking around the hospital Saturday night and they released me Easter Sunday morning.

I have a constant urge to go and my volume and velocity seem diminished. I have a follow up appointment this Wednesday at the hospital then I´ll be clear to fly home.

I'll post more later.

Stayed in Germany for several days as requested by the Doctors. Liz flew home as we didn't plan for the delayed departure. Dr. Chaussy suggested upgrading my return flight from coach to Business class for comfort reasons. It cost $520, and enjoyable.

Initial recovery was as described by the docs in Munich. Leakage occurred sporadically and frequently with manual labor. Bladder operation was also close to normal. Taking one Cialis every three days helped in the erection department. Not sufficient for penetration but....

We went on vacation in early June. I noticed that I was peeing more often and less urine was coming out each time. I was up to walking four miles a day but had to urinate several times during the walk. I told Liz that something was going wrong and that I needed to make an appointment with the urologist when I got back. TOO LATE!! The local uro said I was in full bladder retention. He tried to insert a catheter but could not. Off to the ER for general anaesthesia and I left with a penile catheter and a diagnosis of urethral stricture at the bladder neck.

I e-mailed Dr. Thuroff in Munich, He said that I could not have a stricture because strictures take several months to develop an I only had my procedure six weeks ago (it is estimated that 5-8% of all prostate cancer patients develop strictures regardless of procedure chosen) I faxed him a copy of the ER report and after reading it he confirmed the stricture. The catheter stayed in for 10 days. I hated it. My bladder went into spasm and the kidneys were very painful. After the catheter came out urinating returned to normal, and Viagra proved more successful than Cialis.

A follow up visit several weeks later showed that the stricture was returning. I was dilated in the office, a procedure that was repeated each month for the next three months. After the third time the local uro suggested that I self-catheterise once a day and begin taking Colchicine (gout medicine). He said that he read where other uros have had some success with this treatment. Self cathing while sounding barbaric is actually quite painless and does not take much time to complete.

We maintained this treatment for a couple more months. On the November visit the doc dilated as usual and said It looked as if we "rounded the corner", things looked good! Two days later I began to retain urine again. Now I was cathing to empty the bladder rather than keep the passage open. I returned to the uro office where the urologist could not dilate. He said a "flap" had developed that was acting like a one way valve and not letting urine flow out.

On December 17th I had another laser operation to clean out the urethra. I had a penile catheter in for 24 hours which I removed myself. Urine flow has never been better. The doc said not to self cath and to come see him in a month.

My 6 week and 3 month PSA were 0.1 ng/ml , my 6 month was 0.3 ng/ml. I was concerned about the rise but the several doctors I talked to were not concerned. I have my next PSA with my next uro visit.

The road to recovery has not been without issues, but so far they have been manageable issues. So far I would have to say that if I had to treat my cancer all over again I would choose HIFU as my treatment.

During all of this Liz and relocated to Spartenburg SC where life is taking some getting used to, but we are adjusting.

As we approach two years out from treatment I am scheduled for my next PSA test next week. I am still surprised at the level of anxiety associated with this event.

My PSA has remained 0.7 for the past 9 months rising to that level from 0.3 at three months out to 0.6 at 9 months out. The urethral stricture seems to be under control. I have had dilations at the office and I did receive a laser treatment for the stricture in the hospital about a year ago. Urine passes now without much ado and the stream is strong most of the time. My local urologist(who has performed the HIFU with Dr.S.) has me inserting a 14fr. catheter about once a week. When I do it once a week the catheter goes in quite easy, thing is I often let the procedure slide for weeks at a time then the catheter meets resistance at the bladder neck and is difficult to insert. My local urologist has played an important role in the recovery process and consider myself lucky to have found someone as diligent and open minded as he is.

I find that 10mg of Cialis works best for me in the ED department. Since our sex life is not what it used to be I now take them sparingly ($20.00/pill). Early on and under Doctors suggestion I was taking one every three days with little results. Now, even without the pill, on rare occasion I find myself with a spontaneous erection; more correctly I would call it a half-erection.

My overall energy level has almost returned to pre-HIFU level and my wife and I are working out on the treadmill. I found that an occasional brief power nap in the early afternoon works wonders (a function of age more than PC).

The agony involved in making a treatment choice was almost as bad as finding out I had PCa. This one has worked for me "to date". I need the PSA to stay below 1.0. From what I have been reading odds of it remaining that low are not that good but that is a bridge I will cross if and when I get to it.

I wish you well,

Murph

Latest results are in the PSA has remained at 0.7, needless to say I am happy. Next test is in four months. No anxiety till then. I wish you well.

In March of 2010 my PSA rose to 1.25. My local uro said to check it again in 3 months and if it was still above 1.0 he wanted to do a saturation biopsy to see if the cancer was still in the prostate.

Well three months came and went and I did not have the follow up PSA as requested. My rational was that if I had the test in late May and if my PSA were over 1.0 my summer would be ruined, what with the biopsy, the results, the second opinion, agony over what to do next etc. I didn't want to deal with it. So I just said the hell with it. My next PSA could wait 6 months instead of three.

So I had a good summer, lost about 10 pounds, gave up eating processed sugar and started taking vitiam D tabs on a daily basis. With summer being over I had the test taken and on September 9, 2010 my PSA came out to be 0.95. Needless to say I was happy and said a quick thank you to the 'man upstairs'.

So I will see my local uro in a couple of days to go over things but I feel safe in saying that another biopsy is not on the radar screen at the moment. Urine flow is still adaquate, erections are fewer and further between without Cialis. With Cialis things work pretty well submit.

During the past 15 months my PSA has bounced right around the 1.0 mark (currently it's at 1.09). I have not had the biopsy and will not until the PSA is over 1.5 for two readings. I was told that post HIFU biopsies are nearly 80% negative. That does not mean there isn't any cancer its just that the needle misses most of the time.

The Stuttgart protocol says that a PSA that approaches 3.0 signifies HIFU failure. I'll need to do a tad bit more research into that arena.

Life otherwise is going very well. Erections without pills do happen now and then. Urine stream is moderately strong. Frequent urination is again an issue. As the urge to go comes over me suddenly I had better be able to go soon as holding it for any length of time is not an option.

Had my PSA tested in December of 2012. It came in at 1.5 My doctor suggested a biopsy which was performed in January of 2013. 6 cores were taken on a VERY small prostate. My opinion is he missed most of the shots, nevertheless one core came back with 20% cancer cells in it. (I have no idea what this really means in the whole scheme of things). The doctor ordered up a CAT scan and a BONE scan both of which came back normal. He next wants to do an MRI of the prostate to get a better idea of exact location and size. I'll have a follow up with him in early March and get his opinion on furhter, if any treatment.

Other than that life is still pretty normal and enjoyable, strong stream occasional errection with fantastic finishes. I'll update more when I get the next PSA and discussion with my doctor and the second opinion from the doctor at Duke University. My gut feeling is that a second HIFU or some other treatment is in my future.

Fluctuating PSA over the past year or so prompted my local Urologist to do a 6 core biopsy on the mass that was once a prostate gland. one core was 20% positive 3+4. In April of 2013 I had an MRI which detected a tumor confined to the prostate at 6mm. A second MRI in December of 2013 showed a slight increase to 8mm with a PSA of 1.19.

Second treatment time is at hand. If anyone reading this has had a salvage therapy after a failed HIFU I would appreciate an e-mail from you. Thanks.

Peter's e-mail address is: me.murph AT yahoo.com (replace "AT" with "@")

NOTE: Peter has not updated his story for more than 15 months, so you may not receive any response from him.