HIFU EXPERIENCE
Posted , 17 users are following.
I have decided to have the HIFU procedure and will document my experience for anyone that in the future who is considering this procedure. My PSA has been 18.8, 18.5 and 17.8 in the last 10 months. MRI showed 4 areas of concern. 22 core Biopsy only came up with one core with 5% and Gleason score of 3+3=6. However, the urologist (who is doing the HIFU procedure) thinks (because of the high PSA score) that the urologist who did the biopsy missed the targeted area and believes the Gleason score is really higher. The only way to know is to do another biopsy which there is not much point as we already know there is cancer. The other 3 areas of concern are considered pre-cancerous. I also had a bone scan and there is no sign of metastasis. So...after what seems like endless hour/weeks/months of research, I knew I did not want a prostatectomy or radiation treatment (if at all possible) and settled on the HIFU procedure. My procedure is scheduled in 2 days and my post here is to document my experience. If anyone has questions along the way, let me know and I will respond. If others who have had the HIFU procedure want to chime in, (especially if your experience is different than mine) you are more than welcome to post.
0 likes, 125 replies
ES28567
Posted
Hi all,
Rough night last night. About 11:30 stream went down to almost nothing. Maybe 30ml each time (like a 4th of a specimen cup worth. Urgency and frequently became MUCH greater. I was able to go enough to make it through the night. Stream got slightly better by morning but deteriorated back again to almost nothing and urgency every 10 to 20 minutes.
Tried to self-cath. but hit a road block 9" in (I measured when I pulled it out). Went to urologist and they tried to show me how but ran into road block...too much pain and resistance. So back on Folly catheter for another 7 days. A little discouraging and going through this takes a fair amount of energy out of me. But not too bad.
harveybronx ES28567
Posted
Sorry to hear that setback. So if you couldn't get the self-cath in, how did the Foley go in? Did you just suffer horrendous pain? Was a local anesthetic squirted up your urethra?
Harvey
ES28567 harveybronx
Posted
A little bit of both. They squirted anesthetic in and actually let it work for about 5 minutes. Then I put up with some moderate pain. It hurt more this time than it did last time at the ER.
They gave me a prescription of Phenazopyridine to help with the urethral burning. I think it is working. (It's not a narcotic) it is prescribed to stop the burning when you have a bladder infection but seems to help in this situation too.
harveybronx ES28567
Posted
From Wikipedia: "Phenazopyridine is a chemical which, when excreted into the urine, has a local analgesic effect. It is often used to alleviate the pain, irritation, discomfort, or urgency caused by urinary tract infections, surgery, or injury to the urinary tract. Phenazopyridine was discovered by Bernhard Joos, the founder of Cilag.
"Phenazopyridine is also prescribed for other cases requiring relief from irritation or discomfort during urination. For example, it is often prescribed after the use of an in-dwelling Foley catheter, endoscopic (cystoscopy) procedures, or after urethral, prostate, or urinary bladder surgery which may result in irritation of the epithelial lining of the urinary tract.
Phenazopyridine produces a vivid color change in urine, typically to a dark orange to reddish color. This effect is common and harmless, and indeed a key indicator of the presence of the drug in the body. Users of phenazopyridine are warned not to wear contact lenses, as phenazopyridine has been known to permanently discolor contact lenses and fabrics.[1][5]
"Phenazopyridine can also cause headaches, upset stomach (especially when not taken with food), or dizziness. Less frequently it can cause a pigment change in the skin or eyes, to a noticeable yellowish color."
"Phenazopyridine's mechanism of action is not well known... It is known that the chemical has a direct topical analgesic effect on the mucosa lining of the urinary tract. It is rapidly excreted by the kidneys directly into the urine. ... On the order of 65% of an oral dose will be excreted directly into the urine chemically unchanged."
It's strange stuff that seems to only alleviate pain in the urinary tract. How does it know?
Harvey
ES28567 harveybronx
Posted
Wow Harvey,
That was very interesting! The info said it was used AFTER catheter removal.
I wonder how it could be of any help in my case to help stop urethral burning? I doesn't make sense to me because the catheter separates the Phenazopyridine from the urethra so there is no chemical contact to ease the burning. I will have to ask when I go in a week from this Friday.
harveybronx ES28567
Posted
Indeed. Since the phenazopyridine has a topical effect (quoted above), it has to contact the urethra as it flows out in the urine. If it just flows through the catheter with the urine, it would seem to have no effect, at all, so I would stop taking it, because it has potential side effects with no benefit at this point. It has no systemic effect, evidently, just topical. It is intended to just be excreted by the kidneys into the bladder so it will flow out through the urethra with the urine, thus contacting the urethra. The article also mentions that there is suspicion that it might cause bladder cancer. I certainly wouldn't use it for long term.
What are the directions for usage with the prescription?
Harvey
carolyn96211 ES28567
Posted
how are you, have you still got catheter ?.. Just thought I would let you know Georges first psa test was 0.36...after HIFU so all good..We should of seen Urologist on 16th Sept but unfortunately they cancelled the apt at the last min . So now awaiting another appointment ..but we were told the psa result ..
carolyn96211
Posted
Hi again Es
could not finish properly
this site is bad at times for posting it seems to do what's it wants.
any how hope you are well..you must be at least 4 weeks into recovery now ..hope you are not having problems as you've not posted for a while..
i was trying to say George is good ...Pre HIFU he always had a low psa reading only 1.1 ..but now it's 0.36 .hope you get good results at 3 months
let us know how you are
regards Carolyn
ES28567 carolyn96211
Posted
Hi Carolyn (and everyone else)
It's been exactly one month since my HIFU procedure. I am finally catheter free (for a full week now). A small amount of blood (and small chunks of stuff) each time when I first start to urinate but then it is clear for the rest. I went in for a recheck to my local urologist (physicians assistant) and they checked and I am emptying my bladder so that is good. Last weekend my 2 boys and I started a tree removal project which required much physical activity, including some moderate lifting, tree climbing and dragging of thick branches. We were all very tired by the end of the day. But I felt fine the next day with no repercussions from the physical activity. So I believe my recovery is going well. I can say that it's almost like it never even happened. (Key word is "almost" because it did happen.)
All functions are working and every mans experience will be different but I would certainly encourage anyone with low grade prostate cancer of Gleason 6 (and still contained in the prostate) to seriously consider HIFU. The biggest drawback is the expense in the USA is not covered by insurance (and that is a big drawback). Let me know if anyone has any questions.
Carolyn, I am so glad to hear George is doing well. I hope more men will post their success stories.
God bless,
Eric
harveybronx ES28567
Posted
Hey Eric,
Great to hear your report! I'd like to hear in another month if all is well.
Did you complete the tree-removal project?
BTW, what happened with the Phenazopyridine?
Have you had a PSA test since the procedure?
Lastly, where did you have the HIFU procedure done? [I'm in Southern Calif.]
Continued good luck,
Harvey
carolyn96211 ES28567
Posted
Hi there ES
so glad to hear from you, and glad you are feeling good with no recurring problems as last.. Yes 4 weeks into recovery and you are doing the things you love best ...so up and onwards now and hope recovery continues as I still think this only my opinion your not out of the woods until 8 weeks but do not take this personally..Even Geoge was saying it seems like it hasn't happened coz really he had no pain..not after and not now just the bleeding and that did get on his nerves but it did stop at 8 weeks and has not seen a drop since....he is even doing the jobs around our house and on our other proprieties that we rent out so moderate lifting etc is all good...also he is now of his blood thinners and his blood clot has gone so he's really happy abt that...So n abt 8 weeks time your psa test will be done so the best of luck..
keep us posted on your recovery.
Regards Carolyn
harveybronx ES28567
Posted
Hey Geoff, I have been off the straw (catheter for two weeks now. Everything is working as it should. I try not to eat too much spicy food and even though I am...
Oddly, when I click on the link to go to the website thread, I get nothing more recent than 10 days ago. Â I tried sorting by Oldest and Newest, and Page 1 and Page 2, but nothing seems to turn up your most recent post.
Harvey
geoff90305 harveybronx
Posted
Geoff
Emis_Moderator harveybronx
Posted
Hi Harvey,
There is a known bug with a few of the links in emails not going to the correct place which I have reported. The issue is when the post appears as the last one on a page so the one you are talking about is here:
https://patient.info/forums/discuss/hifu-experience-530647?page=0#2355181
The link from your email replaced the page=0 with page=1 so takes you to the top of the wrong page. I'll chase this up for a fix ASAP.
Regards,
Alan
harveybronx Emis_Moderator
Posted
Thanks! So, every Comment with lots of posts have experienced this problem. I'm surprised that it has gone on so long without someone else complaining or of it being fixed.
Now, what would vastly improve the site is a useful "SEARCH," rather than the extra-lame one now in place (or, at least a few weeks ago) that does not provide the ability to narrow the search. A logical AND is required; otherwise hundreds of Comments come up. That's surely why we have so many new Comments created on the same topic.
It's been a while since I used the Search and tried various combinations of words and quotation marks, so I don't remember all the specifics except that it was pretty useless to find what I was looking for. I think I was searching for "multi-parametric MRI", and what came up was the logical OR between the words and parts of words, whether or not I used quotation marks, so I got hundreds of sites related to MRI, hundreds of sites containing the word "multi" and many more with the word parametric, having nothing at all to do with what I wanted. I gave up; but accidentally did discover this one on HIFU, that I was also interested in.
This site is providing a wonderful service to the world with people's actual experiences, something that has been impossible to get from physicians.
So, thank you for this!
Harvey (in Southern California)
Emis_Moderator harveybronx
Posted
Hi Harvey,
No it is a recent bug and was reported as soon as I saw it. It is being worked on now.
Regarding the search - I agree completely and I have requested this in the past. We are in the process of a site redesign and it is something I will be pushing for again. If you put a $ sign in front of quotes this helps a bit but will search the whole site rather than just the forums, eg
$"multi-parametric MRI" gives 5 results below.
https://patient.info/search.asp?searchterm=%24%22multi-parametric+MRI%22&searchcoll=Discuss_Forums
In this case it is just forum results as the only area to use that term but a more general search like below will return from the whole site.
https://patient.info/search.asp?searchTerm=%24%22prostate+cancer%22&collections=Discuss_Forums
If you want to just search forums you can use the string below in the search box replacing the term in quotes as required.
$"irregular heartbeats" and (type:ForumDiscussionList or type:ForumDiscussion)
It gets a bit fiddly but may help until we get the search improved.
Regards,
Alan
harveybronx Emis_Moderator
Posted
Hi Alan,
Thanks for the "secret" usage of the $ character. I'll try it. However, I could not find any "help" webpage, and I abhor the growing popularity of the typically unorganized FAQ list, which doesn't cover "Search," anyway. It would be great if the site had a complete User Guide, beyond the explanation of the Point system. [In fact, i can't seem to find that, now.]
Notwithstanding, it's probably also true that people have given up reading, unless it's life-threatening, as with the issues this site deals.
But, there has to be a way to reduce the number of new Comments on the same topics that have been previously addressed, and an improved Search would likely do that, along with some gentle coercion to use it.
Harvey