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
No drama today...Life is good!
So just a couple of helpful hints. First, I'm a "boxers" kind of guy. I use to wear briefs but switched about 20 years ago and never looked back. Then it was recommended that I wear briefs while I had a catheter after the HIFU procedure. I still had some tighty-whiteys around so I tried them on (just to make sure they were going to fit. (I still weigh the same so wasn't too concerned.) I just couldn't get used to them so the wife went out and got me 3 different styles of boxer briefs. Some were longer in the legs, some had a little more room in the man area, and the third were the kind that let moisture wick away. They all felt comfortable so they were all packed for my trip. With the boxer briefs, the catheter constantly bothered me and I was always having to adjust myself. Well, here is what I found has worked best.
When I got the new (2nd) catheter, the kit came with a patch that sticks to your leg and keeps the catheter from pulling as the bag fills. That helped but was not the total answer.
So today, I switched back to boxers. And amazingly, there were times during the day I actually forget that I had a catheter! Sitting, I don't even notice it is even there. And I only notice it when walking if the bag is full because of the extra weight on my leg, not because of any pulling. I can honestly say I could wear a catheter for a long time without any annoyance. Another difference is the first bag was strapped to my thigh and the second style (because of the location of the patch) is strapped to the side of my calf. I think I liked it strapped to my thigh a little better (which allows you to wear shorts) but really not much difference. The big improvement was switching back to boxers. I think every man will have to see what works for them but it was such an improvement I wanted to at least suggest you give it a try.
Ok, here is a suggestion to help minimize the chances of a urinary infection. Take a alcohol swab and carefully wipe down your cell phone. Yes, wash your hands before and after you empty the urine bag (or any other time you are in contact with any part of the catheter). But a cell phone is considered one of the most contaminated items and we touch and use them multiple times/day. As a matter of fact...I'm using mine right now!
Be careful not to get the alcohol in any orifices (yes, I'm still talking about your cell phone lol) so as not to short anything out. (BTW, do this at your own risk, don't send me a post that I owe you a new cell phone.) I would also suggest turning your phone completely off and give the alcohol time to evaporate before turning it back on. Also, as a precaution you might want to check with one of the places that sell your phone to see if they caution against it. There's also one or two companies that sell a UV light "cell phone cleaner" that they claim kills 99.9% of all germs so that's another option. For me, I just did the alcohol rubdown on both my wife's and my phone (including the protective outer case) and had no issues.
So like I said...no drama.
Had my best day yet.
ES28567
Posted
No drama today...Life is good!
So just a couple of helpful hints. First, I'm a "boxers" kind of guy. I use to wear briefs but switched about 20 years ago and never looked back. Then it was recommended that I wear briefs while I had a catheter after the HIFU procedure. I still had some tighty-whiteys around so I tried them on (just to make sure they were going to fit. (I still weigh the same so wasn't too concerned.) I just couldn't get used to them so the wife went out and got me 3 different styles of boxer briefs. Some were longer in the legs, some had a little more room in the man area, and the third were the kind that let moisture wick away. They all felt comfortable so they were all packed for my trip. With the boxer briefs, the catheter constantly bothered me and I was always having to adjust myself. Well, here is what I found has worked best.
When I got the new (2nd) catheter, the kit came with a patch that sticks to your leg and keeps the catheter from pulling as the bag fills. That helped but was not the total answer.
So today, I switched back to boxers. And amazingly, there were times during the day I actually forget that I had a catheter! Sitting, I don't even notice it is even there. And I only notice it when walking if the bag is full because of the extra weight on my leg, not because of any pulling. I can honestly say I could wear a catheter for a long time without any annoyance. Another difference is the first bag was strapped to my thigh and the second style (because of the location of the patch) is strapped to the side of my calf. I think I liked it strapped to my thigh a little better (which allows you to wear shorts) but really not much difference. The big improvement was switching back to boxers. I think every man will have to see what works for them but it was such an improvement I wanted to at least suggest you give it a try.
Ok, here is a suggestion to help minimize the chances of a urinary infection. Take a alcohol swab and carefully wipe down your cell phone. Yes, wash your hands before and after you empty the urine bag (or any other time you are in contact with any part of the catheter). But a cell phone is considered one of the most contaminated items and we touch and use them multiple times/day. As a matter of fact...I'm using mine right now!
Be careful not to get the alcohol in any orifices (yes, I'm still talking about your cell phone lol) so as not to short anything out. (BTW, do this at your own risk, don't send me a post that I owe you a new cell phone.) I would also suggest turning your phone completely off and give the alcohol time to evaporate before turning it back on. Also, as a precaution you might want to check with one of the places that sell your phone to see if they caution against it. There's also one or two companies that sell a UV light "cell phone cleaner" that they claim kills 99.9% of all germs so that's another option. For me, I just did the alcohol rubdown on both my wife's and my phone (including the protective outer case) and had no issues.
So like I said, no drama.
Had my best day yet.
carolyn96211 ES28567
Posted
yes George had quite a lot of blood in bag most days but had to drink lots of fluids the more he drank the clearer it was ....also a little leakage of blood around the tip of the willi but no mucus...he was also given 7 days of antibiotics to take just in case of infection, and a 30 day course of a antispasmodic tablet to relax the prostate (I think to make peeing easier).
also pain killers that he never needed.
Hope all goes well..glad you have a nurse you can call
take care
regards carolyn
ES28567
Posted
Hello everyone,
Nothing new to report. Just wanted to wish everyone a happy 3-day Labor Day weekend.
Everything is going fine with me and my recovery. Kind of on "cruise control" until Tuesday when I remove the catheter. So, unless someone asks a question, I don't plan any new posts until Tuesday. (If I do post, that means something has gone really, really wrong, So, hope none of you hear frome me until Tueaday...lol).
ES28567
Posted
Hello everyone,
Nothing new to report. Just wanted to wish everyone a happy 3-day Labor Day weekend.
Everything is going fine with me and my recovery. Kind of on "cruise control" until Tuesday when I remove the catheter. So, unless someone asks a question, I don't plan any new posts until Tuesday. (If I do post, that means something has gone really, really wrong, So, hope none of you hear frome me until Tueaday...lol).
ES28567
Posted
ES28567
Posted
Catheter..."Round two".
So this morning has come and it is time to remove the second catheter. I had already performed this ritual exactly one week ago so I knew the pain level and the rate of speed to withdraw the catheter in which to minimize the pain. Just for the record, it does hurt to pull it out but you can get the pain level down to about .5 on a scale of 1 to 10 simply by controlling how fast/slow you pull.
My wife was with me again, assisting me. This time, being a little more relaxed, I offered to let her cut the tube that held the balloon inflated. At first, she said no, (mostly I think because she was still waking up). But I assured her I was fine with it. I felt like it made her a little bit more a part of the whole process. This may sound strange but the experience reminded me of when I cut the umbilical cord of our first child. It wasn't a sentimental thought, just something I equated it to.
Needless to say, I DID NOT let her help me pull the catheter out as I wanted to have full control of the pain level.
This time, there was a lot more blood on the catheter tube as it was coming out. I'm thinking that it probably made it slide out easier. As a matter of fact, it started sliding out on its own. The last few feet (inches) were totally my body pushing it out. And then once again it was over. Way easier the second time.
My personal experience is, after you cut the tube to release the water in the balloon, wait about 15 or 20 seconds. Then give the catheter a short 1/4 inch gentle pull to force out any water left in the balloon. Then ever so slowly start to pull the catheter out. Don't be afraid to pause for a moment to stop the pain and then resume pulling.
Now, no longer tethered to the catheter bag, hopefully I can begin to return to a normal day of activities.
carolyn96211 ES28567
Posted
Well done Es cannot believe you done that without Uroligy nurse ..in uk we go to hospital Uroligy dept. Then the peeing and ultrasound scan to see if the bladder is not retaking urine.
George 10 weeks into recovery now and bleeding stopped after 8 weeks..so take it easy as pushing pulling and lifting will make bleeding worse...as prostate is basically an open wond. You will have some debris as well ..but I suppose every man heals differently..
From today is day 1 of your recovery ...I wish you luck ..and do not fret as there is light at the end of the tunnel.
Groge has psa on 12th sept and then apt on 16th Sep to see Uroligist consultant who performed HIFU so I hope it's a good reading..
Thinking of you ..and your wife.
regards Carolyn
ES28567 carolyn96211
Posted
Best wishes to the both of you.
harveybronx ES28567
Posted
So now you've written the chapter on "removing the catheter, for dummies (and others)"
The big question now is: Can you pee?
Thanks again,
Harvey
ES28567 harveybronx
Posted
Harvey, you again make me laugh out loud. I guess if anyone could write a chapter for dummies on how to pull out a catheter it would be me. But hopefully it will help someone. If not maybe they will have a laugh or two.
The good news is, it's been just over 12 hours and I can still pee. (Dancing in the streets).
Thanks Harvey for all your comments.
carolyn96211 ES28567
Posted
Good morning Es (it's morning in the uk 9.30am)..
hope peeing is ok ..still keep up the fluid intake..has there been any blood on the first part of the flow?.George had blood on every occasion...do not be alarmed..
If you don't mind me asking how old are you🤔😊
Hope everything will be good for you today..
Regards Carolyn
ES28567 carolyn96211
Posted
Good afternoon Carolyn. (It's afternoon in the UK right now...lol)
To answer your questions: First, and most importantly (at least to me right now) YES, I can still pee. The stream weakened a little last night, which concerned me slightly. I was a little apprehensive that I might be starting to fall back into urine retention. That would mean another date with a catheter. I now have some on hand but never have inserted one myself and there were no instructions with the samples I received. Fortunately, the stream has returned to the same as as it was yesterday just after I pulled the catheter.
Yes, there has been blood at the beginning of each flow. Not a lot. I think it is the seepage of blood from the prostate accumulating in the urethra and then being pushed out upon urination. As far as the amount of blood at the beginnings of the flow, my analogy would be to use a football team running onto the fieldat the beginning of a game. The first 3 or 4 players would represent the amount of blood and the rest of the team is the rest of the urine. I also see little chunks that I assume are dead pieces of prostate. I guess they're the ones that were cut from the team...lol.
Lastly, I am a young 57 year old. I say that for two reasons. I just turned 57 (in the last 30 days) and I am in good physical condition. I exercise regularly (other than right now during recovery) I eat mostly healthy, and other than temporary prescriptions for my recovery, I take no medications.
Thank you for your thoughts.
carolyn96211 ES28567
Posted
harveybronx ES28567
Posted
I don't remember everything you've written; but, did you have BPH before the procedure?
Regarding urine flow rate, mine fluctuates greatly. So far, I have had no treatment for my BPH, with a 70cc prostate. When my need to urinate wakes me up mid-sleep to pee, it's typically under high pressure, and to start peeing requires a bit of time, beginning with dribbling. As I pee and the bladder pressure is reduced, the flow rate increases. This seems to be counter-intuitive. During the day I have no problem peeing, possibly because I never let the bladder pressure get so high.
I'm wondering if during your healing, you also have flow rate fluctuations that depend on how full the bladder is. Did you get any reasons why your flow rate may fluctuate after the procedure during healing? For example, is it urethra inflammation? Or maybe a temporary effect from the bladder sphincter ?
ES28567 harveybronx
Posted
Hi Harvey,
Yes, I did (and still do) have BPH. That is what launched me on this journey. (There was no family history of prostate cancer).
I had similar variable stream issues. As a matter of fact, the first urologist totally ignored the 18.5 PSA score and said all I need is to let him do Greenlight laser and I would be fine, peeing like I was a 15 yr. old, with just a few side effects. He totally mis-diagnosed my case! Had I followed his advice, I would still have cancer. In my opinion, he should be removed from practice for negligence.
The flow problems I have post procedure are a combination of a large prostate (98.8cc), the prostate being swollen from the procedure, and possibly the prostate material that is coming out in the urine could cause some blockage. (Just a guess on the last part).
There were 4 areas that were treated with HIFU. The second two areas were precancerous and were treated... A) because there was a 25% chance they could turn cancerous, and...B) treating them would help reduce the size of the prostate and possibly reduce the pressure on the urethra. Part of the train of thought was, we're there, let's take care of as much prostate as we can.
Because of the size of the prostate, there was almost no concern of damaging the nerves that control sexual functions or damaging the bladder sphincter.
Hope that helps.
carolyn96211 ES28567
Posted
carolyn96211 ES28567
Posted
hope all going ok with peeing and not to much blood or deris..your interpratation of the football match is spot on...and there is the light at the end of that goal post...George is 61 meds he takes is blood pressure and stattens , he says he is to young for this...but his father had it mid 70s.
his prostate volume is 37c . Gleason score 6 grade T2b lower right quadrant was cooked for 60 mins. 1 core was 2m and 2nd core was 7m. So all should be gone...
Thinking of you both just be carefull
Carolyn
harveybronx ES28567
Posted
Hi ES,
Yes, that helps.
I agree with your opinion of your first urologist. Of course, you could file a complaint against him/her with the medical board, or you could educate him/her with your story, which would be far less potentially damaging to him/her and be easier on you.
I hope nothing dramatic (bad) happens during the healing process except continual improvement in your urination.
Was the urologist who recommended HIFU the one who performed the procedure, or did you do the research and recommend HIFU to yourself and then find a urologist who performs that procedure? In any case, I like the reasoning [A) & B)] you mentioned.
Harvey