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
Just want to say thank you for your feedback. I try to add a little humor to keep it somewhat light and entertaining yet informative. However, last night was one of the worst if not the worst night of my life (so far). In an earlier post I describe the first night of pain after my procedure. Yet that night was a walk in the park (and it was no walk in the park) compared to last night.
So below is a very painful story...
Well, yesterday ended up being a very rough afternoon/evening. What earlier in the morning I wanted to kill, I was begging for by nightfall.
The day started out liberated from my catheter. I was peeing ever 30 minutes or so. There was a slight sense of urgency throughout the day but nothing I couldn't control. And there was a very small amount of seepage but nothing a pad couldn't handle. As a matter of fact, the thin pad never needed replaced. The stream was weak but at least I was able to go.I felt pretty good overall. Then, my two biggest fears started to unfold.
At about 5 p.m. I had the absolute worst, what felt somewhat like heartburn ever! Strange thing is I RARELY get heartburn. It felt more like a big bubble in the solar plexus. Not an elephant on my chest. So wasn't thinking heart attack, but I wasn't ruling anything out either. (I was at my 2nd job so I'm trying to keep calm and yet still figure out what's happening). I send an email to My Dr...
Me..."I am having what feels like the worst heartburn in my life. Almost disabilitating. Just coincidence?
Dr..."May be a
Side effect of medication
What are you taking currently?
Me..."No medications other than Flomax. Heartburn symptoms have eased up 90% gone. Now a lot of intestinal pain like I need to go the bathroom really bad. Has been fine all day up till just now. barely can Pee anything out".
Dr..."If you can't pee
You need a catheter for more time"
My first fear just became reality. I've never had a catheter put in while awake before. My only 2 experiences to draw from are from pulling my catheter out this morning, which was slightly painful (and I'm thinking going back in with a swollen shut prostate isn't going to be any better) and once when I was in the emergency room (separated only by a curtain) there was a man in the next bed they were concerned had a heart attack and they were trying to insert a catheter as a precaution. He was screaming in pain and literally begging them to stop. I couldn't see him but it sounded like they were holding him down telling him to try and relax as they were inserting the catheter all the while he's yelling out to please stop. And now...IT'S GOING TO BE MY TURN.
My second and (believe it or not) greater fear was how long would I have to wait in the emergency room? Everyone has heard the stories of waiting for hours to see the doctor! Would I rupture or pass out before my turn?
I immediately leave work and head to the emergency room. Due to my highly superior race car driving skills, (and having a pain level of 7 out of ten) I arrive just a few minutes later. There is only one person checking people in but also only one person in front of me. I look around the room. It's filled with people!!! About 6 minutes later it's my turn. I explain the problem and the pain level and the need for a catheter. She says, we will get you in as soon as possible and proceeds to ask name, DOB, phone #...I answer all her questions while trying to keep my composure. (I'm starting to sweat from the pain.). I ask how long do you think it will be. Her answer...well, there's quite a few people a head of you so it will probably be a little while. So I play the pain card and tell her I'm about to pass out from the pain. She said they would put me on a higher priority being in pain. So while waiting I discreetly call the other hospital in town. the operator tells me there are 27 people in the emergency waiting room. So much for option B. Somewhere around 30 minutes later they call my name. Into triage with a few more questions. Finally into a room waiting my turn I get up off the bed to pace and try to get the pain level to ease. I notice the sheet where I have been laying is wet with sweat. An hour goes by and still no doctor! I try to relieve myself with great pain, a few reddish orange drops come out but not enough for relief. I'm sometimes on my knees with my head resting on the bed trying to cope with the pain. My wife, who has been with me, from before the time they moved me to a room, is silently praying and being supportive. Several times I have stepped out of my room asking how much longer. Finally, an hour and a half later (estimating) the nurse tells me they want to do an ultrasound to make sure I need a catheter and I'm next. 10 minutes later they roll the ultrasound machine in and discover I have 750ml (I think that's the right measurement) of urine. My stomach is budging!!! There's what appears to be a little more sense of urgency by the nurse. Ten more minutes the doctor arrives and apologizes for the delay but he has been busy with a stroke victim. He orders the catheter and says the nurse will be in shortly. Again I'm on my knees clinging to the side of the bed. I slowly move myself onto the bed waiting for the nurse to arrive. In comes the nurse (male) with the catheter package. I want the pain to stop so I'm prepared to even endure the pain I remember the man, so long ago, begging them to stop. I ask if they have any numbing gel to ease the pain of the catheter. The nurse thought for a moment and said let me check, I'll be right back. Minutes later he returns and injects Lidocaine, cleans the area and the insertion finally begins. Was there pain? Yes but nothing like what I was already experiencing and actually about the same or slightly less that what I felt pulling the catheter out earlier that morning. Finally the pressure and pain in my bladder was gone.
And now, the very thing I loathed and wanted to kill earlier in the day was my best friend.
geoff90305 ES28567
Posted
Geoff
ES28567 geoff90305
Posted
You made me laugh out loud. I only wish to God this story was fiction.
harveybronx ES28567
Posted
Wow, ES! This is as engrossing as a whoodunit. I had a couple painful catheter experiences, one from a Foley catheter insertion by a Nurse Ratched type, and the second from a cystoscope, which is probably larger diameter than the typical catheter used to empty the bladder. Probably, the worst part of the pain is its deep-inside location.
So, you reminded me of all that. I suspect that those who do self-cathetering probably don't experience much, if any, pain, since they probably use smaller diameter catheters.
Anyway, I'm curious what caused your urethral blockage and if that's a normal part of HIFU treatment. And if it's normal, why you didn't know about it, beforehand. And moreover, if you had some self-administration catheters you would have avoided the horrible ER experience and the build up of exreme pain awaiting the catheter insertion. And you probably hwould have had a smaller diameter cattheter.
Harvey
ES28567 harveybronx
Posted
All good questions Harvey. So yes, I was aware this could happen. Dr. Sciconti said there was a chance I would need to be recatherized. Typically it is a low percent of only 6%. However I was probably in a higher percentage because I have a large prostate of almost 98cc.
Prior to going to Florida for my HIFU procedure, I had discussed the potential that I might need to be re-catheterized with my Nurse practitioner. She made sure she had a catheter at her office if I needed to come in. So contingency plans were in place.
In general, from what I read, after pulling the catheter out you are instructed to drink 8oz of water/hour. If you can not pee within 3 hours of removing the catheter, then you must have a catheter reinstalled. I pulled the catheter out at 8 a.m. If I could not pee by 11a.m. I had plenty of time to have a catheter put back in place. However, I urinated at 9 a.m. and just about every 30 to 60 minutes thereafter. (Everything was "working just fine" for 9 hours with NO indication of problems until all of a sudden at 5 p.m. Everything started to go south.
If there was going to be a problem, it most likely should have happened fairly quickly. Not 9 hours later. I had considered seeing if I couldn't get a self-catheter kit but as easy as some of the posts make it sound, there seems to be some training involved and it still takes some getting use to. Plus, I think you have to get a prescription. (I don't think you can just order them). I did inquire about them from my local urologist but they were not familiar with the speedy catheters so there were some barriers to access. My plan was take it out early in the morning and if there were problems, either go to my local urologist or the nurse practitioner. Unfortunately my prostate decided to wait until they were both closed before starting to act up.
I also had a cystoscopy (actually it was the very first thing that ever went up my plumbing and totally had me freaked out). I was told it is actually smaller than a catheter. I just did some quick research and I read that "generally it is no bigger than a catheter". I thought, just like you, that it would have been bigger. After all, it's got a light and a camera on the end of it!
harveybronx ES28567
Posted
So, the moral (and recommendation) here is to always be prepared to self-catheter with the device on hand at least several days (weeks?) before the procedure, because the possible need, even though the risk is not great, could be so devastating. The worst things obviously always happen after 5pm and on weekends.
I've read several posts that indicate there are better ways to self-catheter than the "official" training style.
Thanks, and good luck from here. What's the next step? And are you going to get the self-catheter setup?
Harvey
ES28567 harveybronx
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ES28567 harveybronx
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Hey Harvey, to finish answering your post, I guess the next step (or mile marker) is in 5 to 7 days when I pull the catheter out. I did send an email to Dr. Scionti requesting a self-catheter kit which he replied with instructions to call his office in the morning to get one sent to me. I'm also going to talk to my nurse practitioner to see if I can get her to agree to see me after hours if the need arises. (I have read posts on this forum of guys getting light headed and almost passing out the first time they were trying to self-cath so wanted the nurse practitioner as a backup plan.
harveybronx ES28567
Posted
Thanks. I've also read on one of these Patient messages that self-cathing is not bad if you have the proper catheter. Evidently, some are difficult and painful to use and others are not. However, I haven't followed those posts carefully since I didn't have a need, so I don't know which is which.
Harvey
ES28567 harveybronx
Posted
The Speedicath 14s seem pretty popular. But that's just what I read on one post.
carolyn96211 ES28567
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Hi there ES
how you doing with the catheter... Cannot believe you had to take your own catheter out after 5 days...George had his for 7 days and us to go to our Uroligy dept for specialist nurse to take out, he then had to drink a certain amount of fluid and wait then pee... Then take more fluid tea coffee etc wait then pee again ... Anything over 150 ml was ok ...George dome abt 600 ml so all good he also had an ultrasound done to see if bladder retained any fluid, all was good so he didn't need catheter for longer..He had blood in urine for 8 weeks all normal...we went to a Cancer prostate pro active group today very good meeting people who had all sorts of treatment for prostate cancer...we met 2 other guys who had HIFU all said had blood in pee for up to 3 MONTHS so DO NOT be ALARAMED...also blood in semen do not be ALARAMED all normal..But to not lift push pull anything heavy as will cause more bleeding..just take it easy.. George going to have first blood test psa on 12th sept then to see Consultant Uroligist on the16th so we hope all will be good....as these will happen every 3 months then an MRI next June/July 2017...
So hope this message leaves you well
Regards Carolyn
ES28567 carolyn96211
Posted
Hi Carolyn,
All good information. I would like to start to working out but will wait the approriate amount of time before I do. (Not sure how long I need to wait but will ask the doctor). Taking the catheter our myself was an interesting experence but not overwhelming. I will have the catheter I have now until Tuesday at which time I will remove it in the morning. I have make arrangments to have a self-catheter kit on hand if needed. Also, I have made arrangements with my nurse practitioner that if I can't manage to self-cath, she will help me (even if after normal business hours). So I'm a little more prepared this time. Hopefully everything will go better this time. I do have blood in the urine as it is more orange when I don't drink a lot of water. Also, there is mucus and sometimes blood that seeps out between the outside of the catheter and the end of my penis. That has been a little unsettleing. Other than that, I am getting along living with a catheter. From your description, sounds like they are a little more thorough with the testing after removing the catheter where you are. But to be fair, I was back in my home state so that would not have been possible unless I stayed out of town for almost a week which would have been expensive. Also, everthing was working fine when I pulled the catheter out for 9 hours. I would have thought if there was going to be a problem, is would have happened way before that. Well, I'm prepared for Tuesday this time. Glad George is doing well. Keep us updated on his progress.
God bless.
carolyn96211 ES28567
Posted
i have just replied to your post ..but now I cannot find it...so I will post again..
yes George had blood n the bag most days but had to keep his fluid intake up at all times.
yes he had blood from time time at end of the willi but no mucus..
he was given a 7day course of antibiotics and a 30 day course of antispasmodic drug to relax the prostate to make him pee easier, also pain killers that he never took, I assume you were given the same to come home with!!. You will find in time your volume of pee will be normal and a healthy flow.. Georges flow is great..
glad you have nurse to help you next week..
take care Carolyn.
geoff90305 ES28567
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Geoff
ES28567 geoff90305
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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 exercising and doing some heavier work around the house, I am careful not to strain. There is no longer any blood in my urine. I think the last of that was this last Thursday. Sometimes my stream is stronger than others but never a concern that I might be going into retention. Sometimes the flow is the best its been in a year or so and sometimes it's not only a decent stream, the volume is surprisingly a lot more than I expect, based on how full I feel my bladder is before I start. There's no real consistency other than I don't worry about being able to go. I usually sleep through the night. FYI, I only was getting up once a night prior to the procedure.
So at this point (five and a half weeks post procedure)...I can honesty say it's almost like it never even happened,
So, next stop is PSA test at 3 mos. post procedure. Then MRI sometime after that.
Thanks for asking.
paperless001 ES28567
Posted
You described very well the procedure and anyone trying to understand what HIFU is will benefit immensely form your patience and generosity in this description.
ES28567 paperless001
Posted
I'm glad you were able to find my posts and the comments and questions from all those who participated in this string. If it helps even just one person then it was worth the time spent and the raw, sometimes painful, information I have shared.
So to answer your question, if I were you, I would not take the catheter out on a Friday. But only because I would not want to risk having to go to the ER on the weekend. I cannot remember a more painful experience (and trust me I have had many) in my whole life. It was worse than when I passed a kidney stone. Please reread my ER experience.
I have been told there is only a 6% re-catheter rate. The larger the size of the prostate, the more potential for another catheter. My prostate was 98.8cc. So feel free to use that info. as part of your gauge as to your potential risk of going into urinary retention. If you can hold off for 2 additional days, that would be my personal recommendation. But really, Dr. Scionti would be the best one to make that judgment call. In my case, he advised me to wait until after the weekend. If he thinks you would be ok, then go for it. Send him an email or text message, I'm sure he will reply.
Come back and let everyone know how you are doing.
paperless001 ES28567
Posted