My initial PSA was 5.0; my doctor told me I needed to test again in a month. In the mean time I found out what the prostate was and what having prostate cancer might involve. I live a healthy lifestyle, very little meat lots of veggie's, a glass of red wine, my weight is low so no way I could have cancer, I'm healthy! Well the next PSA came in at 6.3, I knew from my reading that was not a good sign so I scheduled the biopsy the next month, December 2009. At the time the Doctor told me 30% of those with my readings have cancer. Well odds are in my favor I'll be in the 70%. I get the biopsy, not very pleasant but necessary. About a week later I get the news I have prostate cancer, and not just a beginners case, its intermediate Gleason 7, and even if I have it treated it could come back. I was devastated; the options the Doctor said I had were RP (Radical Prostatectomy) or Radiation with possibly hormones. Brachytherapy was not viable with my advanced state. I immediately was leaning to RP. My insurance is Kaiser and my Urologist scheduled consults with Doctors for both the prospective treatments.
On the internet I searched, what was the best option? I read and read and read, one evening I came across HIFU but it sounded too good to be true relative to the other options I was facing. I kept looking, it was a few days until I was to meet with the RP surgeon and the Radiologist, I managed to have appointments on the same day.
Meanwhile my wife who was with me at the meeting when I got the news insisted I get treated as soon as possible, her fear was that it would spread, and I was quite afraid of that as well.
This all happened in the space of a few days, the next day after my diagnoses, I read more about HIFU, I found out that it was available in Canada, Europe, Japan, and a Doctor near me was performing the procedure in Mexico. Then I read all the accounts of those who had been treated on YANANOW. Suddenly it was a realistic alternative my mood changed from feeling totally defeated to slightly hopeful. The side effects and the procedure itself appeared to be much superior for me to the other options. I kept reading and reading and I found some negative experiences but many more positive ones, at this point I had almost made up my mind that this was the procedure for me.
I emailed my Kaiser Urologist asking him what he thought of the procedure, he told me it was not mature and that it was still under trials in the US and if I wanted to pursue that treatment I was on my own.
Next I met with the Radiologist, a young charismatic Doctor. He was the only one who told me what he would do if he were in my shoes, he would go for the surgery. I asked him about HIFU, and he said he hadn't seen a lot of data yet but he didn't say it was to be avoided. He told me with any of the treatments I should live a long time. Next I met with the PR Surgeon, he told me about the Da Vinci Robot and what to expect. One show stopper for me was not being able to lift more the 5lbs for 6 weeks after the procedure. My wife and I run a small business and that would have been a real hardship, As a pastry chef I'm constantly lifting more the 5lbs.
At this point I had also contacted the HIFU folks and found out if I qualified I could be treated January 17, 2010. This was a few weeks away and if I was to make the date many obstacles would have to be overcome. The first one was the size of my prostate, I had my records from Kaiser but they only talked about the size in generalities and my prostate had to be under 40cc. Due to needing to book the plane, initiate the expedited passport application I had to know the Thursday before New Years, since the business world would be grinding to halt for the next few days. So as luck would have it, the urologist in Santa Rosa who would perform the procedure in Mexico, was a two hour drive and could perform a sonogram to establish the size, through the traffic and the rain, I arrived in time. Another anal probe and to my delight 39.7cc. My date with HIFU was on!
Well now its January 31, 2010 two weeks after the procedure, and tomorrow I'm scheduled to have the catheter removed, which is a tube coming out of my belly a few inches below my navel. For the first five days I had a leg bag and an overnight bag and no peeing, needless to say that were quite strange. Day 5 I began peeing and I would start measuring what was left after peeing, by day 10 I was usually peeing 70-80% of the volume, time to shut off the bag, that was Thursday, it's now Sunday and I have not needed the bag. I do have to get up a couple times at night and have a little trouble since when I don't go for awhile my penis stiffens up and then the stream drops to a trickle. I do also have a slight burning sensation often when urinating but it's tolerable, also Thursday, Friday, and most of Saturday each urination would start with dark red, which I assume is the passing of the prostate remnants.
Jump ahead to March 1, 2010
I had catheter removed February 1, 2010 and I had read about all different kinds of pain that could cause, well it was out before I even knew, no pain at all. I had a urine test at the time and found out I had an infection so I was put on antibiotics. I have had some days in the last couple weeks where I have difficulty peeing, once it was down to a dribble and I called my Doctor, he was out of town and the nurse's advice was if it gets stopped go to the ER. I jumped up a down a bunch of times and then a small piece of debris came out and peeing was ok again. Then urgency went up and the flow in the last couple weeks has been up and down. I was about to head to the urologist to get it checked out when things seemed to have settled down where I'm pretty much having normal flow. ED is another matter the best so far has been about ¾ of what I would like, using Levitra but I'm told it may take up to 6 months, I have been able to orgasm and have ejaculated a few drops of blood, also I'm told normal.
I'm still in the early stages of recovery, but everything seems to be going well. We left Mexico the day after the procedure and I've been back at work ever since, I did work half a day the first day back, but been working full time since then and I have an active job. At this point I'm very happy with my choice. Now I just have to wait and see if the cancer stays gone. I must also compliment the professionalism of the International HIFU organization; they work very hard to make you feel comfortable and safe.
March 20 2010 update
I had my PSA tested around March 1 this was only a month and half after the procedure, I know I was supposed to wait 3 months but I was curious what it would be at this point and it came back 0.20, my doctor said 0.50 and below was good.
I was reading about the blockage problems experienced by other HIFU patients on one of the cancer survivor sites. They had their procedure a couple months before me so I was counting when I might have trouble, and then Monday just after reading about their experiences on Sunday I ended up in emergency room needing to get a catheter. The Doctor on duty told me they would put the catheter in and I would have to return the next day to have it removed. Hearing this that they couldn't just alleviate the blockage I asked to try again. They gave me a plastic bottle and said go for it, it seemed the nurse was also hoping to avoid inserting the catheter as well. I tried and tried and all that I could produce was a pitiful two drops.
It was a bit frightening and the nurse had some difficulty, but finally it started to drain. The symptoms were odd, I would start to go and then stop suddenly without finishing which progressed to getting nothing out. This happened about 2am so the next day I contacted my HIFU Doctor and he was not surprised, I told him I had to return to my health provider Kaiser to get it removed, he told me I could do it myself, just cut the piece that holds the water for the balloon and slide it on out. Sounded good but I was worried what if I get stopped again. So I called around to medical supply houses to find where I could get catheters if needed. I found one so then I did it, cut the end let the water drain and pulled it out, for a second pee flowed freely and then stopped. I was in trouble again, damn. I called the Doctor got some instruction on self catheter and went and got them. My HIFU Doctor is a few hours away so I wasn't able to pay a visit but he told me what to do. I was quite reluctant and waited until after midnight to give it a try. Nothing came out, maybe a few drops, but no flow. I gave up went back to bed and woke up a few hour later to try again. This time I realized I had probably over lubed the catheter and plugged it up. So I went light on the lube around the tip and this time I got a small flow. Over the next couple days I drank less so I wouldn't have to cath as often I checked in with my Dr's office Wed and he was off, but the nurse explained this happens and it may take some time, when I asked if it would be days or weeks she was evasive.
That day I started getting used to the catheter and was getting fairly good at knowing how far to go etc. I did want to talk to the Dr because it would stop suddenly which didn't seem right. So the next day I told him how it would start a good flow and the stop suddenly, he explained how the bladder once empty would close in on the catheter and stop the flow. I also told him how I had been avoiding fluids to cut down on the cathing, he said not to that getting dehydrated wouldn't help, he also said it would probably be a few more days and I would be ok. After that I started drinking more green tea and soon I had to go again, first I tried and tried and a few drops and then someone needed something from me and I gave up and went back to work. Twenty minutes later I had the urge again, once again I tried, I had developed some new techniques, rocking back and forth, leaning way back sometimes caused a little trickle, this time I felt a strange burning and then out it came a chunk about the size of a small dice, and then the flood gates were open, it was wonderful. Just being able to pee is such a joy. Hopefully the worst is over but now I have a new skill, self catheterizing that I hope I never have to use again. It's been two weeks now since the blockage and I still thank god every time I pee normally.
Even with the blockage episode I'm still very happy with my choice, I've read the stories from those who had the surgery and the problems they have to overcome, I can only say that a lot of them are very brave. With all the press lately about how we are over treating prostate cancer it stands to reason that less invasive therapies would be given a much higher priority. Since my diagnosis I have been reading all I can about prostate cancer. At times I wonder if I really needed to be treated. Perhaps I could have watched and waited, if I had been scored Gleason 6 rather than the 7 I might have been more inclined to wait, but still the psychological impact of not knowing if it will spread is difficult to handle and I do admire those that can.
October 6, 2010 - My initial PSA at one month was 0.20 then 0.10 at the three month mark, then it went to 0.30. I was a bit concerned and asked my Dr. if I needed to consider more treatment. He said it was not of great concern that we needed to keep watching. So I just got my latest PSA while waiting on the phone I could feel my heart race and hear the drum roll. I realized that a lot rides on that little number, I was saying come on roll me less than 0.30 put me back to 0.20 or 0.10, but please don't go over 0.5, what will I do if it is over 1.0, finally after being on hold forever and listening to the advice nurse go through multiple screens "Well sir it's 0.30, what we like to see." "Yes!", I said to myself.
Urinary function has been better than before, I sleep through the night and the stream is better than before.
20% of HIFU patients do experience ED issues and I once again have landed in the wrong group percentage wise, I do notice slow improvement and would say I have been 80-90% at times but not consistently. I have used Trimix injections and must say it is like a miracle drug, I use a very small dose about .03ml and have 100% for at least an hour.
I'm still quite happy with my choice of HIFU and recommend it highly.
It's been a year now and my latest PSA just came back at 0.20, I'm pleased. Also steady progress as ED is less and less as time goes on. Still using Trimix but not always necessary.
March 2011 PSA .02, and May 2011 no longer have ED problems, to my surprise, the sexual functioning ability did take more than a year to return. Don't know if the Trimix injections helped the recovery, but sure did help psychologically.
I've learned a lot since the procedure and still see it as the best option currently available.
PSA 0.3 05/01/2012
PSA 0.3 01/26/2012
My scores above continue to be good. No issues currently. I do have to say with all the controversy around over treatment it is high time the FDA get HIFU approved and give thousands of men in the USA an alternative to AS that doesn't maim them.
After a slight rise in my PSA score to 0.5. I was happy to see my latest score has dipped a bit to 0.4. I have not had any issues. All systems are go, enjoying life and quite busy.
PSA 0.4 09/25/2013
PSA 0.5 04/24/2013
PSA 0.5 01/11/2013
PSA 0.5 11/09/2012
PSA 0.4 01/14/2014 Latest PSA score is good, no issues.
I keep checking back here to see the updated stories and just realized I hadn't updated mine for a year. It's been 5 years since my HIFU procedure and my numbers are good. No issues still waiting for the FDA to make one of the best treatments for Prostate Cancer available to the citizens of the USA but alas they just don't seem to care.
PSA 0.4 02/02/2015
PSA 0.5 12/01/2014
PSA 0.4 08/05/2014
Latest PSA .5, still stable, no issues!
Just had my 6 month PSA test and once again .5, now that HIFU is legal in the USA we should start seeing more stories. All is well and I'm hoping these stable numbers keep occurring. I've also noticed the technology for HIFU has advanced and there are more partial ablations. Instead of Puerto Vallerta my Dr. (Dr. Lazar) is now offering procedures in San Francisco.
Still doing fine my latest PSA test results:
PSA 0.7 05/24/2017
PSA 0.8 01/18/2017
PSA 0.7 09/23/2016
My number is up a little from .5, but still stable with no issues. My Dr. says my numbers are good.
EG's e-mail address is: egb6550 AT yahoo.com (replace "AT" with "@")