After much message board searching I noticed that there were not many recent written experiences with HIFU so I decided to share mine. [One of the reasons that there are few HIFU stories is that few men choose this therapy, which is still regarded as experimental by many.]
Diagnosed in October of 2010 with two cores out of 12 positive (Gleason 6 and 7) after my usually stable PSA jumped from 2.5 to 3.9 (been tested since age 40 due to Dad and Uncle). I am only 50 so quality of life issues were the final decision in selecting HIFU.
I am scheduled for HIFU in Puerto Vallarta Saturday January 22, 2011 and will share my experience as the days, weeks and years roll by.
Saturday January 22 was procedure day with Dr. Stephen Scionti from NYU Med and International HIFU. The treatment was 3.5 hours as my prostate was 36 grams- much larger than the initial diagnosis. The last thing I remembered before the procedure was being asked to turn on my side for the spinal then the next thing I know I was waking up with my wife by my side.
From the consultation the night before through the next day Dr. Scionti and his team were always available and they encouraged questions and very professional and friendly - as was the staff at the very clean hospital. The first few nights post-procedure were difficult. The bladder spasms were very uncomfortable and the leakage through the catheter entry in my abdomen was concerning however the doc said it was expected. The day and night urine collection bags were also quite fun (not).
All in all I am finding the recovery process to be pain free but very inconvenient. It is now day six and I am able to void normally every two hours and the healing feels like it is on schedule. I have already experienced some 'stirrings' of arousal which has me very encouraged.
On a side note I see that Terry responded to my comment above about a lack of HIFU experiences on message boards. Dr. Scionti has performed over 600 of these procedures- a procedure that I would assume each patient has researched for months before ultimately deciding- so I guess I would have expected more than just a handful would be willing to share their experience to help out other patients in their own decision making. [Over the years that the Yana site has been running, more than 2 million men will have been diagnosed with PCa in the US alone. But there are approximately 1,200 stories on the site. That's a little over 0.05 % - half percent. HIFU accounts for 24 of the 1,200+ stories on site. That is about 2%. Some might say that HIFU was over-represented!!]
Everything I read about Dr. Scionti's patients were positive results so I was a bit wary that it could have all been planted advertising. Well so far I had nothing to worry about as the stories I have read on these and other message boards about the experience, professionalism and availability of Dr. Scionti are quite true. I'll check back after I get this darn catheter removed. Stay tuned.
Monday February 7 2011 The catheter was removed today - goodby to my little friend! Urine function has been slowly improving and I hope will continue to do so. Slow & steady stream... up a couple times a night. Still getting a bit of blood and debris from the ablated prostate tissue but this is expected and will probably come and go for awhile.
Erectile function is fine - no issues at all- still awakens with a mind of it's own! Other than the irritation of the catheter the whole healing process has been easy and painless.
Later February 12, 2010: Quick update. I had neglected to mention previously that a fellow gentlemen from across the river in Portland was also having the HIFU procedure done in Puerto Vallarta during the same weekend as myself. Lou and I have exchanged emails daily during our recovery and met for dinner tonight. His experience has pretty much been the same as mine and I have encouraged him to add to this forum.
Otherwise I am feeling great. Urination improves a 'wee' bit daily and no other side effects distract me.
Next stop: three month PSA test...
My PSA at three months came back at 0.78. It was higher than I expected however Dr. Scionti seemed OK with the number and is more interested in the six month reading so we will hold off worrying for now...
All other functions are fine - urination is actually better than the months leading up to the treatment and still no issues with ED.
Quick update: had another PSA prior to my Urologist appointment today. Came back at 0.39 - dropped by half in a month which is encouraging!/p>
All functions normal... back to the lab in July.
Quick update- PSA has risen again to 1.34 and my urine stream has been weakening.
Spoke with both my local Urologist and Dr. Scionti and both agree to test once more in three months and if it has risen again further action is needed. Started taking Flomax for my urine stream and it has noticeably helped - I am much better in that regard. Overall I feel great with no other issues.
Wait and see now....
Now three months later... PSA up to 1.98. Will try and keep this short and to the point: I decided to travel to Boston to see Dr. Scionti and underwent a multiparametric prostate MRI followed by a guided biopsy and while I was there he also performed a cystoscopy to 'look' for the reason of my slow urine stream.
During the cytoscopy Dr Scionti found, and flushed out, some debris left over from my initial HIHU from over a year ago- it worked! I pee much better now (ah- the simple things).
The MRI images showed two suspicious blood paths so he targeted these and took 14 core samples. 13 were cancer free but one had a minute spot of cancer at 3+3 Gleason. After much discussion I have decided to to do Active Surveillance with a follow-up PSA at every 3-4 months months. Do to the location of the cancer (right in the center by the urethra) Dr Scionti would not perform a salvage HIFU so my eventual treatment choices are either surgery or radiation and since there is no way I would consider surgery I will be consulting with a radiologist and researching which external treatment would best fit my situation.
As always: it is what it is... gonna keep up on those supplements & exercise and delay treatment as long as I can!
My four month follow-up PSA count came back at .23... which is either an anomaly or really great news! Hopefully my urologist did not send me someone elses result- or misread mine. Since my last positive biopsy (one core out of 14 showing 5% of 3+3 with a PSA at 1.98) I made a few changes with my diet and supplements:
Switched out my daily dairy yoghurt with cultured soy and coconut. Continued my five days a week at the gym and staying active.
Stopped taking pomegranate extract and started taking Oregano Oil 2-3 times daily, Bee Propolis twice a day, and both zinc and green tea extract about five days a week. I can only hope that the bee propolis prevented the cancer from growing while the oregano oil beat it down.
I am going to take this as a win for now and hope that my next PSA test in November is as encouraging.
Quick update... had to give blood for an upcoming physical so I asked my URo to put in another scrip for a follow-up PSA as I felt that my previous .23 reading a month ago was too good to be true. This test came back at .77 which is triple my last reading but still less than half the 1.98 of my pre-biopsy result. [Unless the PSA test are done by the same laboratory using the same manufacturer's equipment, the results cannot be directly compared. This is even more so with Ultra-Sensitive PSA tests.]
Don't know what to make of it now but I am still considering it as a win... just gonna keep doing what I am doing and wait for the next test...
Got my latest three month PSA back today: .27 (In response to the lab comment above I have used the same lab & location for the past dozen tests).
I cannot be more thrilled with this result. After my initial HIFU treatment I had continuously rising PSA to a 1.98 then a positive biopsy so my last few PSA results have been encouraging. As I stated previously the only changes I made were to my supplements so I am going to continue with what I am doing and hope for the best!
Feb 23, 2013 three month PSA came in at .76- not great but not bad either as I had a similar reading last August between two lesser readings so we'll just have to see what the next three months bring.
Three month PSA came back at 0.33 - over a year at under 1.00! All functions still normal and am still taking my regimen of supplements, excersize and Martinis (only one a day).
Quick update: PSA last month came in at 2.10 which was a very unusual increase so Urologist put me on antibiotics for a month... PSA came back yestrday at .79 so I am staying my course of Active Surveillance. I remain on my supplement regimen of Oregan Oil, Bee Propolis and CoQ10 along with vitamins D & C and daily exercise.
Thought I had updated a couple weeks ago... my three month follow-up PSA was back down to .38 so everything is back on course. I cannot explain why my PSA has been so low the past couple years after receiving a positive biopsy (only one core out of 15 and that was only 5%). Maybe the supplements work... maybe the biopsy is wrong... but as long as my PSA remains low I have no plans for another biopsy. Both my Urologists (my local and Dr Scionti) thought I could wait six months until my next PSA so you'll hear back from me then!
My six month June PSA jumped up to 2.88 but a follow-up a month later had it back down to .96 so I am just going to reset at three months. Feeling great!
Been awhile since my last update. Since last September my PSA results have been:
0.95 Nov, 3.01 June and 0.20 July.
Due to the fluctuating results I decided to pay a visit to our favorite HIFU doc, Dr Scionti in Sarasota, FL and had an MRI followed by an Artemis guided biopsy. Just got the results and they are virtually the same as the ones from back in May 2012: one core out of ten in the targeted area had only 5% of 3+4 cancer. We have decided to continue Active Surveillance and should we see an actual steady rise in PSA I will take a nice trip down to Grand Cayman for a follow-up HIFU.
All else is great - no side effects. And I am still taking my daily doses of Oregano Oil, Bee Propolis, Curcumin and CoQ10. Maybe this stuff is keeping the cancer at bay? Who knows but I cannot complain about the results!
I was reminded that I have not updated in a while but nothing much to report: my PSA remains under 1.00 so I am continuing Active Surveillance.
Keeping my fingers crossed...
Another year has gone by and my PSA remains stable... staying the course!
Kevin's e-mail address is: fmtfreeze AT aol.com (replace "AT" with "@")