The "New" Prostate Cancer InfoLink Social Network
A Service of Prostate Cancer International
Ken Wiens's Page
Gifts Received
Ken Wiens has not received any gifts yet
Latest Activity
I did HIFU 18 July in Toronto and am doing very well. I would be happy to answer any questions. I did just post some comments in the open forum about post-treatment issues.
Discussion related to High Intensity Focused Ultrasound (HIFU); comparisons of different technologies; experiences; Q&A. HIFU is a minimally invasive alternative to surgery and radiation for the treatment of prostate cancer.
So many reactions:
1) There is more to sex than erections, as I am sure he realizes. Still, it's the anxiety and self-perception that gets partly in the way. This is where your reassurance would be central.
2) I wonder about the assertion that the…
Thank you for the information Ken
Dr. Krongrad,
Thank you for the response. With the salvage operation is impotence a sure thing with it. He chose to have the HIFU because I am 34 and he is 59, he thought it would not be fair to me to choose the higher risk procedure. At this point…
Kimberley,
I think we're seeing that none of the respondents so far has seen a scenario like this. Accordingly, there is no basis for a recommendation that rests upon experience. We're in new territory, it would seem, which is partly supported by h…
Dr. Kongrad,
He had the HIFU at UNC, Chapel Hill in NC. It is a trial study. He did not have any scans or tests besides a bladder scoping prior to procedure. Do you think it would benifit him to request other tests to see if the cancer has spread? W…
If HIFU was really "partial HIFU" and as you suggest a good portion of the prostate is untreated then we would be seeing a LOT of measurable PSAs after "partial HIFU" because lots of cancer and/or benign prostate would remain biologically viable. Th…
I haven't known anyone with this specifically, however the urologist that did my hifu did advise me that 3% of his patients (9 out of 300) that he had treated with hifu did have a recurrence. (6 chose hifu again, 2 chose surgery and 1 was still unde…
I hope that things have improved for you, it doesn't sounds like your experience was very positive. Have you gone for hifu-2 ?
I'll admit that I was also concerned about fistula (and warned about it by a urologist). I don't want to open up the deba…
Ken, have you ever heard of a situation like Kimberly describes in this discussion?
Profile Information
- Have you been diagnosed with prostate cancer?
- yes
- What brings you to the New Prostate Cancer InfoLink social network?
- Continuing search of information
- Would you help us grow the network? Would you tell others about it?
- Probably - depending upon what I find here
- About Me:
- At age 51 I was diagnosed with Gleason 6 Prostate cancer with low psa (.6) and negative DRE - April 2008. I was biopsied because my brother also had it and my father died from it. I have recently undergone HIFU (High Intensity Focused Ultrasound) and am awaiting my next psa test.
- Website:
- http://www.kgw-consultants.com
Comment Wall (17 comments)
- At 5:11pm on December 11, 2009,
Kimberly said…
- Ken, No, I am not sure which doctor it is. I am upset, because I also learned that the doctor from Canada was in Chapel Hill the day Mike had his procedure and the orginal doctor we seen was not the doctor who preformed the procedure, yet it was the doctor from Canada and I was not even told his name or that he would be preforming the procedure. This has just turned into a nightmare!
- At 4:48pm on October 19, 2009,
Ken Wiens said…
- 15 months (since hifu). PSA undetectable, no incontinence, ED largely gone. WIll continue with 3 month tests for the balance of my second year and then return to annual tests.
- At 1:01pm on October 19, 2009,
Ed Beckwith said… - Ken: I am very enthused to join this group and would like to share my experience with those who have interest, comments or questions.
During July, 2008 I researched HIFU extensively online. I eventually met Dr. Richard Lotenfoe in Orlando and he performed my biopsy mid-July. I learned within 22 hours that I had High risk PC and BPH, PSA 18 and Gleason score of 9. Dr. Lotenfoe is an independent Urologist from USHIFU in Charlotte, NC I decided in August to undergo Greenlight Laser procedure In Orlando on September 3 which was basically an outpatient proedure at Hearts of Florida Hospital. Dr. Lotenfore was instrumental in being one of the first Urolgoists to use Greenlight to reduce prostate size.
I had lost 20 lbs and down to 140 lbs. and was very concerned that radiation treatment would be especially hard on me as I have gastritis. I asked 100's of questions, in particullar regarding my concern if HIFU would be successful considering my high Gleason score. I was informed that they had treated previous patients who had high Gleason scores.
After discussing my options with local oncologist's and radiologist's locally and undergoing pet-scan's and Mri's which showed no matastalizing, I decided that I wanted to have the HIFU treatment in Cancun, Mexico performed by Dr. Lotenfoe and assisted by USHIFU technicians for the Sonablate 500 on September 14 where 3 Urologists did 10 procedures in 3 day's. I went into the OR at 6:30 P.M. and was awake and alert at 4:00 P.M. The total procedure time was approximately 4 hours and 10 minutes. I ate in a restaurant that evening at 7:30 P.M. I had a catheher placed directly into my bladder. I returned home 36 hours later.
I already had written instructions on how to train my bladder over a 2-3 week period. I was addionally assisted daily by phone from USHIFU RN's on all pertinent information regarding in training of the bladder. Very competent, immediate and wonderfully personable invidual assistance anytime I needed anything!
I have been completely pain free throughout both of these procedures and would HIGHLY recommend this treatment to anyone who chooses non-invasive treatment vs. the recovery time and obvious suffering involved in comparison to post-prostectomy and/or radiation therapy. I started a regimen of Casodex and have had hormone therapy for 12+ months. My PSA has remained at 0.1, current to October 8, 2009.
I am in frequent communication with USHIFU in Charlotte and have been informed that they have passed all 3 phases of clinical trials in the U.S. anf expect procedure approval within 12-18 months from the FDA.
Note: I have recently been queried on the following from a poster on this site: "if you have been receiving Zoladex and Casodex for 12 months, how can you know that the HIFU "worked"? In someone like you, combined androgen deprivation would normally reduce your PSA to less than 0.1 ng/ml (whether you had HIFU or not)
My response to the above:
1. How does anyone know how effective any type of PC treatment will be over-time?
2. During my discussions with Dr. Lotenfoe and other USHIFU staff members, I was informed that I should stay on hormone therapy for a minimum of 2 years.
3. I also have had discussions with other HIFU patient's who are on the same regimen and had the procedure the same time as I and they all are doing well.
4. Additionally, I have been seeing a local Urologist who recommends the same advice, "stay on hormone therapy for a minimum of 2 years".
5. I have a cousin who had a PSA of 17 and Gleason score of 7 at approximately the same time I learned that I had cancer last year. He chose to take radiation; has been very sick and weak since that time. His urologist also recommended hormone therapy for a minimum of 2 years. During his most recent checkup, he was informed that he has cancer of the mouth.
6. i have a good friend who had PC several years ago and had radiation therapy. He was informed after approximately 3 years that he was cancer free! Well, the PC returned recently, so to what degree did that procedure work?
I realize that there will be proponents and critics during the next months and years regarding the effectiveness of HIFU vs. invasive procedures including prostectomies and radiation therapy. Knowing my overall health situation from the get-go formed my conviction that I made the right decision for ME!
Like they say, "only time will tell". For the time being, I feel better than I have in several years and I am back to my normal weight without having to go through pronlonged pain and suffering from the above-referenced procedures as compared to non-invasive HIFU. I have noted that some critics prefer to use the term "minimally" invasive which could be debated to some extent I suupose. In any case, I will continue to post my condition as time passes.
Best wishes to all.
Ed
- At 7:45am on May 27, 2009,
E. Michael D. ("Mike") Scott said… - Yeah ... Your primary care doc's potential explanation had crossed my mind too ... but in that case I would have thought the removal of a stricture and the associated return of high quality erectile function would be relatively common (which it ain't, as far as I am aware).
Anyway, I suppose the main thing is to be thankful for large mercies! And damn the reason!
:O)
- At 12:20am on May 27, 2009,
Ken Wiens said…
- I visited my family doc today and mentioned this to him. He wondered if the stricture could have been placing pressure against the blood vessels used in an erection and the removal of the stricture released this pressure (thus allowing for the rapid expansion of these vessels as required for an erection)
I'll admit the coincidence theory is the one I'm leaning towards.
- At 10:38am on May 26, 2009,
E. Michael D. ("Mike") Scott said…
- Ken: I quote Dr. Krongrad re stricture Tx and the recovery of your erectile function ...
"Hmmm ... Never heard that, although I have heard about rapid return of erections at around 12 months. Coincidence?"
- At 7:00am on May 26, 2009,
E. Michael D. ("Mike") Scott said…
- Glad to see your PSA is behaving. That IS interesting about the effect on ED. I'll ask Dr. K. to look at your post and see if he had any ideas.
- At 10:37pm on May 25, 2009,
Ken Wiens said…
- I got my 12 month PSA test results back last week. Still undetectable. I had been treated for a stricture a month ago. Strange thing after the treatment - ED was also gone. From nothing to 90% back. I have to wonder if there was any connection - although I can't imagine what it would be!
- At 2:34pm on February 15, 2009,
E. Michael D. ("Mike") Scott said…
- Good luck Ken. Anyone who takes the (relative) risk of treatment with newer technical methods deserves all they luck they can get! Let us know how you do.
:O)
- At 1:25pm on February 15, 2009,
Ken Wiens said…
- I've just had my 9 month blood test. Shold get the results on Tuesday (long weekend). Previous tests all great. Will know in a few days.....
About
Selected Papers
Need InfoLink cards?
GENERAL DISCLAIMER
The "New" Prostate Cancer InfoLink's Social Network is intended for informational and educational purposes only. It is not engaged in rendering medical advice or professional services.
Any person who appears to knowingly render medical advice or promote a professional or commercial service on this site may be removed by the administrators without notice.
Information provided on this site should not be used for diagnosing or treating any health problem or disease.
The "New" Prostate Cancer InfoLink is not a substitute for professional care. If you have or suspect you may have a health problem, please consult your health care provider.
Any person who appears to knowingly render medical advice or promote a professional or commercial service on this site may be removed by the administrators without notice.
Information provided on this site should not be used for diagnosing or treating any health problem or disease.
The "New" Prostate Cancer InfoLink is not a substitute for professional care. If you have or suspect you may have a health problem, please consult your health care provider.
Events
© 2009 Created by Arnon Krongrad, MD on Ning. Create a Ning Network!
