Well, I'm just getting into this prostate business. I had colon cancer 5 years ago which required a colon re-section, 6 months of chemotherapy and follow-up scar tissue surgery. I was declared cancer free in January and in February was found to have a slightly elevated PSA of 4.1. It had escalated from a year before when it was 2.6. My family doctor sent me to a urologist who performed a biopsy and found 4 positive samples of 12. He discussed my treatment options which did not include either proton beam or HIFU. I found these in my own research.
After many hours at the computer and communicating with others who've had experience with these treatments as well as all the others I opted for HIFU. I've chosen my doctor and am scheduled to have it performed on July 1st in the Bahamas. My urologist is very supportive and when I discussed these other options with him he encouraged me to pursue them.
Just a quick update. I've had my HIFU treatment. It was performed 9 days ago on July 1, 2012 in Nassau, the Bahamas. I had no issues worth mentioning after the procedure. I flew home the next afternoon. I have a suprapubic catheter which is the only evidence that I had anything done at all. I had no post procedure pain. As a matter of fact I couldn't tell that I had anything done at all. It seemed almost too easy. I'm monitoring my catheter, keeping it emptied and clean and measuring urine that I'm able to pass naturally as well as that which remains that is taken care of via the catheter. I've yet to notice much progress in urinating naturally so I'll probably have the catheter for some time yet. But I'm not too anxious to have it removed as I've read some horror stories of some who did and had to have it re-inserted. I'm staying in touch with my doctor and his staff and so far am very pleased with the procedure. Of course, I'm anxious to have my first blood test at 3 months post procedure to be able to gauge the outcome.
It's now August 6, 2012 and I'm continuing to recover well from my HIFU procedure. I had the SP catheter for almost 4 weeks. It's been out now since July 27th. Removal was painless but a urine culture did show that I had a bladder infection. My local urologist says this is not uncommon especially for a catheter in place for that long. I just completed a round of meds to knock that out and seem to be 100% now. My only noticeable after effect of the procedure is a weak urine stream but that is steadily progressing. I do note that when I have a need to urinate that I should go asap as if I don't I have a sense of not emptying the bladder completely that requires several trips to urinate for a couple of hours. Other than that I have returned to normal activity and now am waiting for my 3 month check of PSA which will occur around October 1st.
One more thing: I have not seen any material passed in my urine as I expected. My HIFU doctor tells me that I may not see anything but some cloudiness in my urine as my body may absorb all the ablated material.
I've just had my 3 month post procedure PSA test and it comes back at 0.40 down from 4.0 when I was diagnosed in January. I'm very happy and encouraged.
I'm still having a bit of an issue with urination but it has shown much improvement in the last few weeks. Up until lately if I did not urinate when I first had the urge I would have trouble completely emptying my bladder and may have to go again every 15 minutes or so for a couple of hours until I caught back up. I was getting up to urinate several times every night to go. But recently the trouble fully voiding is much improved and I only have to get up in the night once or sometimes even not at all.
Erectile function is not great and is insufficient for intercourse even though I'm on daily doses of Cialis but that seems to be improving as well. It's much too soon to expect full recovery in that area so I will try to be patient and not panic just yet.
Most importantly my 0.40 PSA reading strongly suggests that my HIFU procedure was successful. I will continue to be monitored in 3 month intervals and will keep my postings on this site current. Good luck to all of the rest of you, both those who have had treatments of various kinds and those of you researching your options.
I've just received the results of my 6 month post HIFU PSA test. The number is now 1.5 which shows a slow rise from the first test (0.4) and the next unscheduled test at 4 1/2 months (1.1). I've reported this to my HIFU doctor and his response is that tests should be done every three months for the first year after the procedure to establish a nadir and then cancer is considered to have returned only if the number reaches nadir plus 2. I'll just have to continue to be patient and watch the numbers. I'd be a lot more confident if my numbers stayed very low as in the 3 month post procedure test or even non detectable as some men get but only time will tell I suppose.
I've just received results of my most recent PSA test. My numbers are back down to 0.4. At 3 months post procedure it was 0.4 and at 6 months it had risen to 1.5. I was concerned but my doctor explained that it could be indicative of what was called a "bump". Now at 9 months it is back down to 0.4 so it seems he may have been right. My next test will be a full year post procedure and he tells me that whatever my number is at that time will be considered my base number and that there will only be concern if my numbers reach that base number plus 2. At this point I'm very much encouraged that my procedure may very well prove to have been successful.
I'm now one year post HIFU procedure. My PSA at one year is 0.4. My doctor is pleased with this and it appears to have stabilized after having a temporary rise which my doctor said is not uncommon. I have slight trouble in completely voiding and some erectile dysfunction which may be age related as well as anything else such as after effects of HIFU. I'm exploring the possibility of having a penile implant. Other than that everything remains the same. I'm very pleased with my procedure and the outcome to this point.
I am now 15 months post HIFU and just got the results of my most recent PSA test. My number is now 0.2. Pre HIHU it was 4.1 and rising. At three months it was 0.4. At six months it climbed to 1.5. My doctor said this was not uncommon and called it a spike or bounce. He explained that where it was at twelve months was most important. At nine months it was back down to 0.4 and likewise at twelve months. I'm very pleased that it continues to drop and am very happy with my choice of treatment.
The only long term effect that I've suffered is E.D. Of course I began taking Viagra in my early 40's and gradually increased the dosage as needed. I finally was using Cialis but it was getting ever less effective. So even without the prostate cancer and HIFU I was having problems in this area. Now at 15 months post treatment and still having problems (Cialis is no longer effective) I've opted for a penile implant which I'm receiving tomorrow. I tried all the meds and even injections with little success so I'm now at the final solution. I have high hopes that it will be a successful procedure and I won't regret it. What's the worst that can happen? It won't work or I have to have it taken out? In that event I'll never be able to have another erection but I'm at that point now. I will update this story when I've had enough time to heal and let everyone knows if it is successful and if I'm happy with my decision.
Here I am back with my latest PSA update. Just got results from Jan. 3, 2014 blood work and my latest number is 0.3.
I did have the penile implant. It was successful and not too traumatic. After recovery it works fine. It's a bit different from a natural erection but certainly much better than none at all. I have a 3 piece pump. After a bit of practice I've mastered inflating and deflating and it is very usable. I would say that I lost just a little length but girth and firmness are fine. As a matter of fact fully inflated the firmness is more than I've ever experienced. It lasts as long as needed and orgasms are as enjoyable as ever. I'm pleased and happy I had it done.
It is now February 2015 and there is no recurrence of my cancer. My last blood test did show a level of 0.5 but is still very low and well within the acceptable range.
It is now April 2016. I'm almost 5 years out of my treatment. There has been no change in my health. I do see my urologist regularly but only annually. I did have a very small PSA last time but it was well within normal. I know that had I opted for surgical removal that it would be 0 but I'm very happy with my choice of HIFU. My main fear had been of incontinence of which I have none. Also should I have a recurrence of prostate cancer I could still have surgical removal. One of the points of HIFU was that should it not be effective I could still have any of the other treatments. I do understand that micro surgery is now better than it was about causing incontinence so if I were doing it today I might give that more serious thought. But all in all I am happy with my choice of HIFU.
Had my annual exam last week and today received the results of my blood work. My PSA is at 1.1 which is higher than last year but not alarmingly so. I see back over the last few years it has gone up and down. Otherwise I have had no problems. I do have blood work done twice a year for other issues so I will keep an eye on my numbers until my next urology appointment a year from now.
I had some other medical issues (Kidney) that led to blood tests in December, about 6 months after my PSA had risen to 1.1. In December it is 1.9. Even though this is well within the acceptable range my urologist is concerned about the unexplained rise. He sent me for for extensive tests. One was a full body soft tissue scan of some sort. The other was a full body bone scan. Both tests show no evidence of cancer anywhere in the body. So he scheduled and performed a needle biopsy as he did when I was first diagnosed. Since HIFU had been performed the prostate was extremely small. The biopsy showed malignant cancer in 5 of the 12 areas tested. All scored 7 on the Gleason scale except for one which was graded an 8. We immediately scheduled surgery for prostate removal on March 2, 2017. It is now January 26. His intent is to perform robotic microsurgery but this may not be possible. In 2007 I had colon cancer and had a colon resection. That surgery led to scar tissue which completely blocked the colon so the scar tissue had to be removed. So with the 2 abdominal surgeries he expects he may run into scar tissue which will prevent completion. If he does have to abort the robotic surgery he will go ahead with the radical method. I have a penile implant which may have to be disabled if he does the radical surgery and it is in the way. He expects me to have a catheter for 2 weeks post surgery. Since the cancer has returned it has me questioning the wisdom of HIFU. Had I had prostate removal 5 years ago rather that HIFU I probably wouldn't be going through this. I will keep my story updated as events occur.
I had my surgery March 2, 2017 as planned. I was sedated from 12:30 p.m. until 4:30 p.m. My doctor was in recovery when I awoke and was very optimistic. He had indeed been able to perform the surgery robotically and not radically. He said the implant was not a problem and it should work as good as ever after recovery. He said there was no visible evidence of cancer outside the prostate. I had a penile catheter. Next morning he visited at 9:00 a.m. He said that I should see him in a week and that I should be walking that day in preparation for going home the next day. I told him I could walk out of the hospital right then so he said I won't keep you here unless you want to stay. So I went home at noon the day after an afternoon surgery. Saw him a week later and got the catheter removed. Lab reports were good. Margins are clean so there is no need for further treatment at this time. PSA will be monitored to spot any recurrence. In hindsight, I could have foregone the HIFU and saved the $25k. I could have had the removal 5 years ago instead. But I do feel fortunate to have dodged a bullet twice.
Darrell's e-mail address is: clementsdarrell AT gmail.com (replace "AT" with "@")