Ron T and Donna live in Colorado, USA. He was 64 when he was diagnosed in November, 2008. His initial PSA was 8.50 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was HIFU (HIFU (High Intensity Focused Ultrasound)). Here is his story.
On Nov. 13th I was told I had prostate cancer, Gleason 3+3=6, PSA of 8.5. Not believing that I could have cancer I took my biopsy slides to Denver to have them reread, again, cancer was the diagnosis.
I am 64 years old and in otherwise great health.
My wife hit the Internet and talked to friends. A friend told her about HIFU; this friend didn't know much, but he pointed her in the direction. She had already read, at the NCI site, under the list of possible treatments that "ultra sound" was a option, but when she clicked on it the info was just regarding clinical trials. However, one of the trials was in Denver, and we live close by, so she called and sweet talked her way into getting me an appointment the next day.
We showed up first thing in the morning, and the technician took me in to measure my gland using ultrasound, meanwhile my wife talked to a doctor in the lobby and was totally convinced this was the best remedy for me. My Gleason was under the limit and my PSA was under the limit. But then, the doctor said my gland was too large to qualify for the trials, it couldn't be over 25cc in size and mine was 29cc. The trials were using the Ablatherm machine, which is made in France, it has a pre-set size limit, as the doctor sets the machine on the gland and it zaps the gland, some of my gland would fall outside the scope. Plus, my gland was 3 centimeters high, the Ablatherm can only get a gland 2.5 high. You can have HIFU again, but who wants to?? I've read there's a 40% redo rate in Europe with the Ablatherm, just for this reason.
When we got home my wife hit the Internet again, she found that America makes another ultra sound machine and this one can be adjusted throughout the treatment so that all of the gland can be ablated. She found old data that had some undesirable results, but when we weighed the data between surgery and radiation against HIFU, and also took into account that some doctors may be just learning the technique, there was no choice. HIFU was the clear winner. It would cost ,000 but I would have little threat of incontinence and ED, there were other risks listed but I reminded myself that in our litigious world one must be very cautious and list every single vague possibility.
I had an appointment with my local urologist, he told me that radiation causes other cancers later on in life, and that surgery was really my only option, and that I only had a few weeks to make my decision, I must hurry! He said "hurry" because my cancer was near the wall of the gland and could easily travel outside. At the end of my appointment with him my wife asked him "what about ultrasound as it had been listed in the NCI list as a possible treatment", he was agitated and responded, "It's not FDA approved in the USA, oh I suppose you could get it in Mexico, I don't know about you but I wouldn't go to Mexico and have anything done". He made it sound like you would be having it done in someone's garage and he never mentioned the ongoing clinical trials at the University of Colorado. She didn't trust him anymore, and I decided she was right, he was there to sell us surgery, he is the surgeon after all.
My wife spent endless hours on the internet, she wrote to one of the people on this Yananow list and he wrote back telling us that he is still all clear after 7 years and very happy he had HIFU. That was it, we settled on "international HIFU", and when we called and spoke to the HIFU people in Hilton Head, S. Carolina we knew we had made the right decision. Dr. Stephen Scionti is virtually the most experienced HIFU doctor outside Europe, 400 treatments. I had to mail him all my data; the picture from the ultrasound, my biopsy and PSA score.
Plus, I had to get pre-op clearance from my general doctor and mail that in, then I was booked for Dec. 19th in Mexico. I paid the ,000 to International HIFU before we went using Visa, as I also know about web scams I had a bit of reluctance, but if this was a scam -- it was quite elaborate! I'm not sure but I think they offer financing.
We flew down to Puerto Vallarta -- a lovely place, great hotels. 5PM the night prior to treatment, we met Dr. Scionti and his nurse, Robert Johnson, at the San Javier Hospital. They were devoted to their craft, funny and thorough, it was a great meeting, we were relaxed. Dr. Scionti also brings a certified Sonablate500 technician (to monitor the machine), and a anesthesiologist. They explained everything, my only real concern was the catheter I'd be getting, but I'd be getting this with surgery as well.
Dr. Scionti has used the Ablatherm machine, but he prefers the Sonablate, as he can be sure that he zaps every piece of the prostate, and if any cancer is outside the gland -- that he can see through the ultrasound picture -- he can also zap it. He's been doing this for 5 years, he also teaches HIFU to doctors around the world. I always knew I was in good hands, but I felt even better now, having met him and his team. We were given pages of information, also Dr. Scionti's email address, home phone number, the nurse's phone number and email as well, instructed to phone anytime day or night, plus I needed to call the day after treatment, then email every three days for a month, then once a month.
There were two other men at the meeting who were being treated this weekend, one had already had a TURP (Trans Urethral Resection Procedure) a month or so ago, because his prostate was so large, plus he had been on hormones to reduce the size. I didn't need a TURP, thank goodness. I couldn't eat anything but jello and clear broth this day, I thought I'd die of starvation, but it wasn't as hard as I imagined.
The following morning I awoke at 5AM, inserted a Fleet enema, let it work, then another. At 7:30AM we went to the hospital, I was put in a private room, where I put my anti-embolic stockings on (be sure to order these at your local drug store a couple weeks before you need to leave as sometimes they can take a while to get), and the nurse gave me a IV to put me to sleep.
My wife says she inspected the hospital, and it was perfectly clean, absolutely spotless, no dust under the beds or in the corners, nothing but a perfect little hospital. I was rolled into the operating room.
From what they told me, I was first given the supra pubic catheter, they used the tube to fill me with saline solution to clean me out. The HIFU treatment lasted 2 & 1/2 hours I woke up at 11:30AM groggy, had a light lunch, let the sleeping potion wear off and then the nurse, Robert, taught me the tricks of dealing with the catheter. He stressed that I drink a lot of fluids, 48 oz. a day. And in 4 days I should clamp off the catheter and try to urinate normally. At 3PM we were driven back to the hotel by the HIFU team, where I sat around, pretty much surprised that it was over and I was absolutely fine! We went out to dinner that evening, we stayed in Puerto Vallarta another two nights, took daily walks on the beach and in town, no exertion is allowed.
Unlike the rush my urologist put on me -- Dr. Scionti told me that there had been no hurry to treat my cancer.
I was glad I had elastic waist pants because the catheter was awful to deal with. I hadn't ever had any health problems in the past, my patience level was very low. I really had to suck in my aggravation. I followed all the rules: just wash with soap and water, then put gauze on and then tape over it, no Neosporin, nothing else on it. I did that twice a day in the shower. There was a tiny drop of sticky yellow stuff at the hole, I was told that was normal, my body was trying to expel the foreign object. The bag has a strap that attaches to your leg during the day and at night you attach another bag to the tube and hang it over the side of the bed, I slept fine on my side or back.
I took the pills Dr. Scionti had had prescribed: Cipro, for a few days to make sure I didn't get infected. Flomax, for a month or longer to relax the prostate/bladder neck for better healing. Detrol, until the catheter is out, it relaxes the bladder so it doesn't spasm trying to get rid of the catheter. And he prescribed Cialis for a month to keep the blood flowing. I had taken Viagra once a few years ago, it was awful, it gave me a hard on for 4 hours, but Cialis wasn't anything like that. I felt normal.
On the 4th day I clamped off the catheter and urinated fine, re-clamped after two hours so the particles could keep coming out the tube. I understand that the tube keeps the particles from clogging up in the urethra. If a clog were to happen I might need a TURP-- roto-rooter of the penis. The next day I clamped off the catheter again for 4 hours, urinated normally, the next day 6 hours, just to keep my muscles working. Plus each time I peed I measured what was still in my bladder by unclamping to check, if the amount was below 2oz. for a couple days, then I was ready to have it removed. Plus, they had given me Kegel exercises to do, which I did.
On the 19th day I felt I was fine to have the catheter removed, my residual had gone from 4oz. in the beginning to 2oz, now, so I tried to book my local urologist, he said that I should call Dr. Scionti because he was no longer my doctor. Spoiled brat! The following day I called my local hospital and a nurse removed it. She was a urological nurse for 12 years, she told me that she thinks incontinence is close to 90% after surgery, she said, "Oh if you saw the surgery you wouldn't think anyone could come out of it without being incontinent or having ED, it's the worst messiest surgery, the nerves are everywhere, they cannot be avoided"….she also added that if her husband had prostate cancer she wouldn't tell him, she'd just hope for the best. I told her about HIFU, she was excited to learn about it, she hadn't ever heard of it. I was so nervous about having the catheter removed, but it was gone in a flash, a drop of liquid came out, she put a bandage on and that was it. I never had any incontinence issues what-so-ever, prior to HIFU I would dribble a bit after going, but no more dribbles.
I was a bit nervous about having sex, so I waited another 5 days, my catheter hole was now healed up....my wife was dazzled that there wasn't a mess, and I climaxed normally.
I stopped taking Detrol when the catheter was out, but continued taking the Flomax for 2 more weeks, until my prescription ran out, and I kept taking the Cialis for a month. Sex was fine after the Cialis ran out. But then I realized that even before HIFU, I hadn't had the best erections for the last few years, while I was on Cialis they were much harder. I guess I got spoiled, so I'm back on 10mg a day Cialis.
It was well worth the $$$.
I still take 1/2 of the lowest dose Cialis (10mg), but I only take it the night before I plan to have sex in the AM. It seems to make me harder.
My PSA is 0.4 I am 6 months out now. I still have the gland, just no tissue in it, so I am guessing that is why there is a number.
I had my PSA tested, it's 9 months since my HIFU, and my PSA went down it's now 0.3
Life is the same as it was prior to HIFU, I never had any troubles or problems, I can't imagine not going with HIFU, even for high risk patients the 5 year post HIFU data shows 64% no cancer. Low risk is 97%, intermediate risk is 88%.
The risk of any side effects is so low, the major important piece of info is to make sure you pick a doc who has had lots of experience, as it's a skill like surgery, very precise, only no cutting! no radiation! no hormones! However, I suppose some may need a TURP to reduce the size of the gland. I didn't. I recommend HIFU for all, as I found a urologist who said that surgery and radiation belong in the Smithsonian. So, no matter what my PSA or Gleason I'd call International HIFU and ask them if they would treat me, they won't if they don't think HIFU will work on you, they don't want the bad press or bad statistics.
I've now sent in five friends for HIFU with Dr. Scionti and all report being amazed & thrilled, and well worth the ,000 to not have to face a lesser life.
I still take Cialis on occasion, I work on my own, it just adds confidence... I get Cialis from alldaychemist.com for a little less than .00 a pill, which includes shipping.
I am not johnny on the spot about testing my PSA, but I finally went in, it is now 0.56 at February 2010
Dr. Scionti told me that is excellent as it represents overall stability. He is the master, so I'm quite happy!
I don't take Cialis at all anymore, and I recommend HIFU every single chance I can! I've heard back from many guys and all are thrilled they found HIFU.
I had my PSA tested again March 25, and it came back down a spot to 0.55 STABLE, steady, low and stable.
I want to stress to all who may read here to follow the rules you are given after HIFU, drinking plain water (so much you think you will die of drowning) flushes out the debris, sugary drinks, alcohol, milk and drinks with pulp are not recommended, get the junk outta you! Don't even think of trying to pee until you are 4 or 5 days past treatment.
I get happier by the day! Best to all of you!!
New PSA score is 0.60.
I understand that the gland that is left after HIFU is scar tissue. Which leads me to wonder... if cancer is still left could it travel outside the hard scar tissue? It doesn't seem likely to me, and I've never read of anyone who had cancer travel outside the gland after HIFU. Just another reason to chose HIFU.
Don't misunderstand me I do not think I still have cancer, my PSA is stable and low, because I still have a gland. Very happy I found HIFU, wish I could tell everyone!
All is well, heck, all is perfect, a steady score! [Now 0.67] Thank goodness I found HIFU.
December 2010. PSA reading was 0.76
I now live in Puerto Vallarta part time, where my HIFU took place. I decided to go visit Dr. Carlos Garcia who is a Mexican national and lives and works there as a urologist surgeon, he accompanied Dr. S. Scionti with my treatment two years ago. I had Dr. Garcia ultrasound my gland, he found quite a lot more tissue than I thought I would have, against the bladder. So, there is my reason for a PSA reading and one that continues to rise.
I would like to recommend Dr. Garcia, he is simply a great doctor, wonderful manner, and he charges ,000 for HIFU instead of ,000. He has performed around 300 HIFUs over the last six years although he still recommends surgery in some cases. He lives there so there is no need to travel or bring his team, he works through International HIFU, but doesn't need to pay into America's exorbitant insurance system . Find him at HIFUMX.com.
In response to a reminder, Ron said:
I only get tested once a year now, and that will happen in another month, so I will update then.
Thanks for your note,
Got my results, PSA of .9
Had my PSA tested and it dropped! I'm down to .45
I believe that shows that my gland has finally finished healing.
I hear that most men have a much lower PSA after HIFU, than mine these days, I guess they cook more tissue than he did on me, I feel he cooked less because I had little cancer and to insure that I had no undesireable side effects. I feel badly about the race to the bottom, the point is no cancer, isn't it? In restrospect I would let the doctor decide how much to cook, and not press for the lowest PSA.
Good luck and I am convinced that HIFU is the only safe offering for prostate cancer.
I haven't been tested since the last update. I have no concerns, I know I found the best treatment, and am confident in my prostate health.
Finally had the test a few months ago. This site has been invaluable to me, so I best update for others. Good luck to all.
I just learned that a rise in PSA of over 2.00 per year means treatment, it's not the number (unless the number is 50.), it's the rise.
They sure are keeping news of HIFU down in the USA, while both Canada and the UK pay for it on their insurance.
PSA is 0.60
Finally HIFU has been FDA approved.... I think we have the determination of the doctors who have been flying out of the country treating us to thank for that. But still I read on forums people saying that it isn't the best option, to which I say..."ask a HIFU doctor if your case is right, not someone who you don't know if they have a financial interest, and I do not believe HIFU doctors will say your case is right unless it is, they do not want any bad press."
BTW, I've read that the redo rate is currently down to 8%, while the surgery and radiation rate is holding at 30% relapse. And that low % is most likely due to doctor experience.
I had to choose what treatment I had between focal HIFU or HIFU on this site, but I don't believe there is anything other than focal HIFU, so there will always be a PSA reading.
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