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I went HIFU and it worked

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Posted 5/28/2010 8:35 AM (GMT 0)

I received my second PSA result (six months after HIFU) a couple of weeks ago. The three-month result was 0.4 and the latest measurement was 0.5. Bear in mind that I had focal treatment so I still have a fair amount of prostate tissue remaining. The urology nurses assure me that this sort of fluctuation is nothing to be concerned about unless it turns into a trend. Apparently the PSA can vary up and down quite a bit during the first year.

I have this evening received the result from an MRI scan I had 10 days ago. This was a high resolution scan utilising a contrast agent called gadolinium which is injected partway through the scan so that areas can be compared before and after the contrast agent takes effect. For a radiologist, the comparison allows potentially greater accuracy in identifying tumours.

The letter from my consultant said - "Please find attached the MRI study. You will see that this is completely clear. The necrosis has completely resolved and there is no MR evidence of any residual tumour in the treated left side. The untreated right side, as we would expect, also shows no evidence of any tumour. I hope you find this reassuring."

You bet I do VIEW IMAGE

Cheers,

Jeremy

Posted 5/28/2010 1:21 PM (GMT 0)
Jerry

Good news on the scan. I would still have your PSA checked on a quarterly basis. As you can see from my stats, I had almost everything removed and my PSA is still going back up. This happened at the 18 month mark. The cancer can "escape" from your prostate and lurk around in your body just waiting for a chance to start growing again. If it is really spread out, a scan probably wouldn't pick it up right away.

Not trying to be negative, just realistic....

Posted 7/9/2010 9:19 PM (GMT 0)
Jerry.
Been wondering how you are doing?

Purgatory, this isn't 'catheter #17' for you, this is THE LAST CATHETER. I hope and pray. You certainly have a wonderful wife. Your patience is remarkable, but what else can we do?

I had my year anniversary PSA test, and it came back at 0.3 I can say honestly that concerned me, why go up? I'm told not to be concerned, it's normal for the PSA to be irregular, and an increase of .1 isn't much, I tell myself that maybe the last tests were really .29

I'm 71 and I am happy to have another year of good health. I feel great, the minor issues that I had were nothing to complain about and so I take what I can get day to day.
My best wishes to all.

_____________________________________

My June 2009 PSA was 8.6
4 cores positive
Gleason 3+3=6
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta
HIFU treatment July, 2009
PSA reading for 3 months 0.4
PSA 6 months & 9 months was 0.2 (which is excellent, as long as it stays there)
PSA July 2010 is 0.3
Posted 7/10/2010 2:08 AM (GMT 0)
Hi guys,

So far I am a success case for HIFU, so a bit of the story for those interested .
Tested because of recent family history and PSA 7.5 at age 60.
Two of six cores were Gleason 3+4 with 50% involvement, with a third core at 3+3 with smaller involvement. Prostate size about a 23.
Treated by Dr Scionti with my uro in attendance in Bermuda. No overnight in the hospital, and walked from the hotel to a restaurant in downtown Hamilton for dinner the night of the procedure.

SP catheter removed two weeks after the procedure, and leak from the hole stopped a few days later.
No incontinence - only pads from day 1 were at the SP site.
No ED.
No pain meds used or needed.

I am back to work in the office half days three weeks after the procedure.
Making a claim with the health insurer, we'll see what they say.

I understand that others are concerned about lack of proper 10 an 15 year stats, but I was willing to trade off that uncertainty for better QOL prospects.
Posted 7/10/2010 2:23 AM (GMT 0)
Cherries

I wouldn't worry about your PSA going up .1, that is still too minor a change for any urologist or doctor to consider any sort of treatment plan. It has to jump .5 or some higher value, to be cause for concern.

I have decided to get an implant within the next year since my insurance will cover it. Then I can quit the ED drugs and injections, everything will be back to normal although I can be ready in 3 minutes whenever I want. Which is better than natural....

Posted 10/5/2010 9:26 PM (GMT 0)

Hello all,

The doctor phoned and left a message saying that my " test result was the same as last time".

Now, I've been thinking, I'm not a spring chicken anymore (71), why worry myself with these tests.?   If the cancer were to come back I don't think that I would do anything, and wouldn't cancer be  smaller than it was, and it shouldn't change to aggressive in nature, now would it?  Wouldn't I be in the situation of someone who takes the watchful waiting approach?  Wouldn't it take years to grow to be able to kill me?

I didn't tell my doctor about this, was thinking it today, but it's always been on my mind.  Anyone want to confirm or yell at me?

I surely hope that everyone is doing great, and that hb got his implant without any troubles.  Thank you for the nice place.

__________________________________

My June 2009 PSA was 8.6
4 cores positive
Gleason 3+3=6
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta

HIFU treatment July, 2009

PSA reading for 3 months 0.4
PSA 6 months & 9 months was 0.2 (which is excellent, as long as it stays there)

PSA July 2010 is 0.3

PSA Oct. 2010 is 0.3

Posted 10/5/2010 9:31 PM (GMT 0)
great report, we all love good news.

as far as what to do at your age, if things came back, your choice brother, respect each guy's choice, depends on so many things, including all the important quality of life issues.

good luck to you


david in sc
Posted 10/6/2010 9:31 AM (GMT 0)

cheries said...

My son had his PSA tested, it was his first time (that he knows of), he is 40, it was 2.3  That's good, right?

------------------------------------------

Cheries, I know you posted this some time ago. I think that 2.3 is pretty high for a 40 year old and probably bears careful watching especially with the family history. Most 40 year olds would have a number lower than 1.

Regards,

An

Posted 10/6/2010 2:51 PM (GMT 0)

Cheries

My PSA has doubled in the last six months, going from 0.35 to 0.7. So I will be doing IMRT sometime in the next few months. I don't know if I would stop the tests. My urologist did say that if I were 80 instead of 61, he would tell me to ignore it and enjoy life. My grandfather lived to be 95 and my dad is still alive at 88.

If I were in your shoes, I would do the tests for at least another year. But of course, that is up to you.

Posted 10/6/2010 5:59 PM (GMT 0)
 

oh no hb, I am really sorry to hear that, gives me another look, you are undoubtedly right, I made my decision after getting the stab, what's another year?   It’s just that I understand that prostate cancer takes 20 years to kill and I’d be well into my 90’s by then.   I'm sure your MD is right hb2006, but there’s no reason for prostate cancer to be more aggressive after treatment is there?

My son says he is on top of it, and his psa hasn’t moved much since first testing, thank you for your concern An.  You are making me think though, he wouldn't want to worry me, but I think he would tell me.  Maybe here's where I need to be aggressive.

Really nice to hear from my old friend purgatory, looks like you had surgery in September?  Guess it went well, and you are off the catheter?
Posted 10/8/2010 6:50 PM (GMT 0)
I meant to tell you fellas that my doctor told me he got an email from a doctor friend of his from John Hopkins who wanted to inform him about HIFU, about it and that it is very promisicing.
Posted 10/9/2010 2:32 AM (GMT 0)
cheries you say you'd be in your nineties, as if that was the end of the road. Well I've just been talking to my 97 year old mother who is just back from being out to dinner this evening. Earlier today she was out to have her hair done, go to the bank, and to book club. Tomorrow she'll be coming out to the farm for dinner. Sunday she'll be at my brothers for dinner. Lord knows what else.

My dad used to say, "Who would want to live to 100 ! ! ???"

Then he'd say, "Ask someone who is 99."

Don't be too sure you'd think it was just fine to pop off at 92 from a bad prostate if everything else (heart etc.) was going good.

Sheldon AKA Sleeplss
Posted 2/27/2011 7:51 PM (GMT 0)

As I titled this thread, HIFU works and it works well, here is my newest test results.

larch, how about you?   you said "I understand that others are concerned about lack of proper 10 an 15 year stats, but I was willing to trade off that uncertainty for better QOL prospects. "  good statement

and the others who have had the HIFU treatment, how is it going? 

__________________________

My June 2009 PSA was 8.6
4 cores positive
Gleason 3+3=6
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta for HIFU

Treatment July, 2009

PSA reading for 3 months 0.4
PSA 6 months & 9 months was 0.2 (which is excellent, as long as it stays there)

PSA July 2010 is 0.3

PSA Oct. 2010 is 0.3

PSA Feb. 2011 is 0.3

Posted 2/27/2011 7:53 PM (GMT 0)
congrats on another great reading for you, something is working right, thats a lot of consistency going on there
Posted 2/27/2011 7:53 PM (GMT 0)
cheries, good to hear from you again, and with good news, too. Congrats.... smilewinkgrin
Posted 2/27/2011 8:55 PM (GMT 0)
Wahooo cheries, there are many days I wonder if I were doing it all over again, knowing what I do now, would I still dance with da Vinci, or would I give HIFU a try.

I love the fact that doing HIFU doesn't seem to rule out any other options to try if it doesn't work, including da Vinci surgery, although, come to think of it, I suppose seed delivery for radiation might be a bit iffy.

However, as my grandmother used to say, "no sense crying over spilt prostate!" --- or, something like that anyways.

I wish you a thousand years of zeros.

Sheldon AKA Sleepless
Posted 2/28/2011 7:16 PM (GMT 0)
Hi Guys,

Two out of three outcomes are doing great, but I get to be one of the rare cases of follow up treatment post-HIFU.

Interestingly, while the HIFU doc says all options are open, the uro (who does DaVinci) did not recommend either surgery or seeds because the gland post-Hifu is so small. Not cooked like with radiation, just small. I should say that both the Gleason numbers and the % of tissue that is cancerous were much smaller on the post-treatment biopsy than on the original, but since the original biopsy was a Gleason 7, the risk that there are still 7's lurking in the gland is too great for me.

I am still not enthused with radiation, so back to Bermuda in April.

Will let you know how the re-treat goes.

Larch
Posted 2/28/2011 9:39 PM (GMT 0)
larch, sorry to hear your bad results. I am guessing you are saying you're gonna repeat the HIFU? if so, good luck, hope they get those critters this time. Be sure to let us know how things progress...
Posted 3/1/2011 1:46 AM (GMT 0)
Interesting, Larch, I wish you well.

I was aware that after HIFU sometimes more treatment was needed ---- much like us surgery guys, I guess. What doesn't match with my research (such as it was) is the prostate being not cooked. I spoke to a surgeon, who had removed a prostate via da Vinci after HIFU and while the prostate was smaller, it was my understanding it was 'cooked' as it is heat from the ultrasound being pinpointed that kills the tissue, and the cancer.

I'll be watching for your future posts.

Again, I send all my best wishes for success.

Sheldon AKA Sleepless
Posted 3/4/2011 10:27 PM (GMT 0)
Sleepless,

The radiation fries the gland so that it literally adheres to the surrounding bone/tissues in a way that it needs to be scraped off by the surgeon - which is why most surgeons walk away - and why HIFU is being investigated as salvage therapy for radiation treated patients.
HIFU certainly cooks the tissue, but not the same way as radiation.
Posted 3/5/2011 3:45 AM (GMT 0)
Thanks, Larch, good to know, although now that my prostate is sliced up in a lab in Edmonton it's all somewhat academic. Interesting though.

I hope you'll keep posting and let us know how you're doing.

Thanks again!

Sheldon AKA Sleepless
Posted 3/5/2011 6:35 AM (GMT 0)
Larch,
I run a live support group in Las Vegas and I have two HIFU patients in the group both treated by Dr. S. One is doing fine and swears the technology up and down as the cure all. The other is wearing a catheter 6 months after therapy in the Bahamas by Dr. S. He has a damaged sphincter and scarring that will require a TURP with a "50/50 shot" as he says it of peeing right again. He also upon his return suffered a severe clinical viral infection that has had to be treated by intravenous means. The doctors who diagnosed that infection said it's common in unclean clinics and is seen commonly in patients treated outside the US. He also has another problem ~ his PSA is moving the wrong way. And considering his biopsy was a single core positive and a Gleason 6, that's not the advertised results.

So much for burning it safely I guess...

I might be able to get you in touch with the second guy if you'd like to compare notes.

Out of curiosity ~ will it cost another 25k for the second round in Bermuda you are planning in April?

Tony
Posted 3/5/2011 10:39 AM (GMT 0)
Tony, Larch, this is distressing news about possible issues with the clinic Larch has gone to. It may, or may not, be a comment on HIFU per se, but it is concerning. Thanks for sharing this.

Larch, the Cleveland Clinic from Ohio has a location in Toronto Canada that offers HIFU and the doctor I talked to there, Bill Orovan, is MD Anderson trained. A friend of mine (anethestist) worked with him in the OR before he was doing HIFU and gave him an excellent review as a surgeon. If you were looking for a second opinion he might be someone to talk to.

Sheldon AKA Sleepless (who is up and on the laptop at 4:30 a.m. )
Posted 3/5/2011 9:13 PM (GMT 0)
I read that Bermuda HIFU was mentioned among you... this may be of interest.. appears to be some concerns... (updated as today, 3/5/11 as of this posting):

www.royalgazette.com/article/20110305/NEWS06/703059948/-1/news07

Good luck and thoughts to all of you.

Bob on Cape Cod.

added clickable link for you

Post Edited By Moderator (James C.) : 3/5/2011 2:22:54 PM (GMT-7)

Posted 3/5/2011 10:47 PM (GMT 0)
Larch,

I am very sorry to hear your situation, would you mind sharing what your first PSA score was after treatment? 

I can't help but wonder if we all don't expect to be totally cancer free after any and all treatments, and if the reality isn't that some will while some won't be.  That statistically speaking almost all men will die from or with prostate cancer.  And if you might be better off in watchfull waiting. 

As far as the facility in Burmuda goes, I haven't been there, but the quality of the doctors and nurses who work for USHIFU are such that they would not tolerate anything but the best.  The hospital in Puerto Vallarta was the best I've ever seen.  I remember the nurse telling me that the men who have had problems post treatment caused their own troubles usually by thinking they knew more than the doctors, by using anti-bacterial soaps, that sort of thing.

There are plenty or horror stories from each treatment, I venture to say that I'm betting hifu has the least.

I wish you much good luck, larch.

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