Official HIFU thread

JerryB · Posted: Thu Nov 05, 2009 1:53 pm Post subject: Re: Official HIFU thread

Hello newly no problem!

As you say, a loose waistline on pants is a definite must with the suprapubic catheter in place. My whole abdomen is a little swollen anyway, at least in part because I'm still experiencing constipation following hormone treatment.

Obviously every consultant has a different way of suggesting how things should be done. I've been clamped off all today - as instructed - but I'm only managing a very weak, irregular stream at the moment. Not really enough to properly empty my bladder. If things get uncomfortable I just open the clamp on the catheter and let things drain into the toilet. I've been told that it will probably be two steps forward and one step back for a while. I suspect that the stinging sensation in my penis, and the fact that I am slow in getting any form of serious flow, probably relates to the fact that I have had hemi-ablation. I am very confident that the stinging sensation isn't anything to do with 'chunks in the tip'. Several people I have corresponded with or read about, also experienced the stinging sensation, so you are very fortunate in not having it. It's not exactly painful, but it's certainly not fun.

I was on hormone treatment for three months with the aim of reducing the size of my prostate. It finished at the end of September, but the side effects - from which I suffered quite considerably - are still lingering on. I suppose that will be the case until my testosterone level re-establishes. I'm sure we have the same types of hormone treatment here in the UK as elsewhere. I was on something called Prostap (Leuprorelin acetate) which caused all sorts of annoying problems, particularly very poor sleep, hot flushes, constipation, weight gain around the middle, muscle loss, tiredness, a complete loss of libido, you name it. It was sufficient to make me very concerned if ever I should reach a stage where I have to go on hormone treatment for advanced cancer.

It's great to hear that things are going well with you. Despite the fact that I have had very little success so far in urinating properly I am happy with the way things are going, and the support am receiving from the urology nurses is first class.

Cheers, Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

lihhnl · Regular Joined: 31 Aug 2009 Posts: 20

I just got back home from my HIFU treatment in Germany. My catheter was removed last Friday and was that a relief. The catheter was the biggest problem but adaptable. My urination is still restrictive but the flow is constant with no real problems. I believe the reason the flow is restrictive is because the prostrate is still swollen from the procedure and may remain swollen for several months.

I used "Dr. Doug" Chinn in Arcadia, CA. He is quite a character and is a real personable person. I had a full ablation but he saved the nerves and I have not had any incontinence. I am still waiting to see what other functions are still valid and maybe in a week or two I will know more.

I paid Dr. Chinn about $10,000 plus the hospital (no extras) for about $12,000. Additional expenses included airfare for me, my wife and the Doctor plus hotels. All in all, my total cost may run as much as $32,000 but I live in Hawaii and that is a real long way from Germany.
_________________
PSA 6.9 Age 65
4 positive cores of 18
Gleason 3+4=7
Stage between T2a & T2b
Ablatherm HIFU Germany
3 month PSA 0.08

JerryB · Posted: Fri Nov 06, 2009 4:43 am Post subject: Re: Official HIFU thread

Hi lihhnl

Good to hear about your experiences with HIFU. I'm interested to know how long it was after your treatment before you began to be able to pee reasonably, and how long after that your catheter was removed. I am now six days after my treatment but so far I can only pee with a very small dribble. No doubt I'm being impatient and time will bring results. I had hemi-ablation of my gland which I'm told means that it may take longer for the swelling in my prostate to subside because there is more tissue remaining in it. Aside from the peeing issue I'm feeling fine.

Out of curiosity, how many times do you find that you have to get up during the night to pee?

Great news to hear that Dr Doug was able to save the nerves and you are not suffering any incontinence. Good luck with the other functions.

Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

lihhnl · Regular Joined: 31 Aug 2009 Posts: 20

JerryB,

I was also impatient about peeing and was extremely excited from the first drops. After the first week, I thought I might be able to remove the catheter but the instructions required me to be able to urinate and measure the residual from the catheter and maintain less than 50cc. It started great then all of a sudden, the residual had increased more and more. I made the decision not to rush and just accept the situation.

Finally, after about 2 1/2 weeks, the measurements were below 50cc but I kept the catheter for an extra 5 days before the doctor ok'd its removal.

Even with it out, I feel the urge almost every 2 hours. Night time is the worse due to not getting adequate sleep. I might add, I am drinking a lot of water and therefore need to urinate more frequently than normal. It is slowly increasing and now I urinate about every 3 to 4 hours at night. It gets better and better as time marches on. It does take a lot of patience.
_________________
PSA 6.9 Age 65
4 positive cores of 18
Gleason 3+4=7
Stage between T2a & T2b
Ablatherm HIFU Germany
3 month PSA 0.08

problem · Regular Joined: 12 Sep 2009 Posts: 43

I just spoke with my nurse and he said if I should try getting hard in the shower in a week, and if I'm having trouble to start on a low doseage of Cialis. The reason would be that there's a crimp in the veins, and Cialis keeps the blood moving so that the crimp works itself out.

lihhnl, maybe you should ask about Cialis, he also said not to let it go for long, like your garden hose, the crimp needs to be strightened out, or it'll stay that way.

I am clamped off for 3 hours today. I have had no problems. In fact flow is strong.

JerryB, It surely sounds like there's debris stuck . You said you were told about self catherization, maybe give it a try?

I wasn't told about self catherization, it wasn't mentioned, what was stressed was to relax & let the bag do it's job. You see all the gunk in the bag, I could see I didn't want it going through me. I remember reading that since they started using the supra pubic catheter the incidence of urinary strictures greatly deminished.

The nurse also told me that they like us keeping the bag in use for a minimum of 18 days. I read that you only need to drink excess water for the time the cath is in.

I have 10 pages of instructions & possible problems and questions here, did you get the same? no mention of self catherization.

58 y.o. PSA 12. Gleason3+4=7 biopsy showed 5 cores positive

JerryB · Posted: Fri Nov 06, 2009 3:45 pm Post subject: Re: Official HIFU thread

I guess it would be nicer if we could all get together for a beer and talk around the subject of HIFU, but as that isn't possible we are at least very fortunate to have the Internet and Cancer Forums.

Of course, it is possible that I have debris stuck in my urethra but I'm fairly sure that my inability to pee yet is primarily down to the fact that the remaining half of my prostate is still swollen. I spoke earlier this evening with one of the urology nurses - they are very good at keeping in touch - and she said that I really should not concern myself at all about the situation, and I shouldn't 'strain' when attempting to pee. When it happens, it will happen naturally. She said that in her experience it can occasionally take several weeks before any significant degree of urethral flow is achieved. Nothing to worry about at the moment.

I have been taught self-catheterisation but as there is no serious suggestion yet that my inability to pee is caused by debris, the urology nurse did not suggest that I do it. However, bearing in mind that urethral blockage is a possibility in the future, after the supra-pubic catheter has been removed, it is comforting to know that self-catheterisation is there as an option.

Yes, I have plenty of instructions and information. Also, before HIFU I had a session of about one hour with a urology nurse going through everything.

I think that every HIFU surgeon has slightly different recommendations for the way their patients should deal with things following treatment. Like your surgeons I'm sure, Mark Emberton has probably more than 500 HIFU procedures under his belt, and so I'm happy to go along with his suggestions.

Now, I can't pee properly yet but, interestingly, I can get the makings of an erection! I'm still experiencing the after-effects of hormone treatment so my libido is at rock bottom and I have little interest in the idea of sex. At the moment I don't have a lady friend to titillate me, so, out of curiosity, I have this evening clicked onto a mild porn site and managed to get fairly substantial stirrings! All in the cause of medical science of course! Hopefully, that's good news for the future.

Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

lihhnl · Regular Joined: 31 Aug 2009 Posts: 20

Problem,

The doctor put me on Cialis and have been taking it.
_________________
PSA 6.9 Age 65
4 positive cores of 18
Gleason 3+4=7
Stage between T2a & T2b
Ablatherm HIFU Germany
3 month PSA 0.08

JerryB · Posted: Sat Nov 07, 2009 9:44 am Post subject: Re: Official HIFU thread

7th November

It is a week now since I had my HIFU treatment, and perhaps it's time to assess the last seven days.

My experience with HIFU has not been one of - 'out on the quad bike the next day; peeing normally from the word go; sex like it never was before'. Alright, I'm being facetious, but occasionally I have seen comments implying that recovery from HIFU is little more than getting over a common cold. In my case anyway it hasn't been that simple but, having said that, it really hasn't been at all problematic (so far!).

Pain. Nothing that I could honestly call pain. A certain amount of discomfort from the incision in my abdomen for the suprapubic catheter, but that rapidly settled down. Some distension in my lower abdomen. And the ' knives'. Not my description, but one used by someone posting elsewhere with experience of HIFU. This is the stinging/pricking feeling in the end of my penis. It has occurred at a fairly low level of discomfort on a number of occasions during the past few days, but it is when attempting to pass urine that it really comes into its own!

It truly isn't sufficiently bad that I would call it pain, but there is a certain quality to the discomfort that makes it a peculiarly ... ... er ... ... interesting. I guess as much as anything it's because of where it's located which is a pretty sensitive area. I understand that some people do not experience this at all; others do and I have no way of assessing how my discomfort compares with theirs. I understand that it is referred pain from the prostate area and, because I had hemi-ablation of my gland, it's possibly worse than if I had had a full ablation, as there is more inflamed tissue remaining. I'm assuming that as the inflammation in my prostate subsides, the 'knives' will decrease.

Other negative aspects. The suprapubic catheter and urine bags take a little bit of getting used to, but one soon gets the hang of things. I am now no longer using a bag, which makes things a lot easier. I still have the catheter in place but I attempt to pee normally as and when I can, although with only very limited success so far. If I feel my bladder is filling up too much I just open the clamp on the end of the catheter and void into the toilet.

I no longer have a dressing at the point where the catheter exits my abdomen. There is still a little bit of leakage at this point (mainly urine; a little bit of blood) so I pull up the incontinence pad a little higher than it would normally would be worn so that it covers that area. I tape down the catheter tube onto my abdomen a couple of inches away from where it exits, just to prevent any tugging.

At the moment incontinence is not an issue, although there are just a few drips on the pad. I am assuming that as my normal urinary function improves so also will the degree of incontinence. However, I'm reasonably confident that this will be relatively short lived.

I can't really comment yet on erectile capability, because I have been effectively neutered ever since being on hormone treatment. My libido is non-existent and therefore erectile functionality isn't currently an issue. Hopefully, once my libido returns, I'll be able to report positively on function. Having said that, yesterday evening I was able to produce definite stirrings as the result of visual stimulation.

I've felt a little bit fatigued this week, but not excessively so. To a certain extent that was the case previously anyway, because I'm still feeling the results of my three months of hormone treatment, despite the fact that technically it finished five weeks ago. I've been out raking leaves, general tidying around in the garden, going into town and doing the shopping, in fact all of the normal type of daily activities, without getting into anything which involves heavy lifting or extensive bending (too much bending tends to be a little uncomfortable in the lower abdomen).

I've been sleeping well at night. In fact, considerably better than I was before HIFU, when I was getting up far too many times during the night as one of the side-effects of hormone treatment.

Constipation has been a pain in the a-s! Again, this is at least in part a hangover from my hormone treatment. It was probably exacerbated by the general anaesthetic. Being constipated when your lower abdomen is already rather tender isn't ideal, but I've been taking the necessary measures to combat it with a certain amount of success.

And that's about it so far. I'm passing small debris in my urine and the occasional larger, bloody chunk which gives me great pleasure because I tell myself that I'm getting my own back on the Pca!

The catheter will need to remain in place until I can demonstrate that I am able to pee freely and routinely, and that I am emptying my bladder fairly completely. I'm not sure how long that will be, but it could be several weeks more. It just depends how things go.

I have a routine MRI scan in a few days time, and a PSA test in three months.

In summary, I am obviously not able to compare my experience of HIFU treatment with surgery or brachytherapy (the other two options that I was considering). Time will tell how successful HIFU has been in terms of retaining continence and erectile function and, of course, in successfully eradicating my PCa. So far, I certainly have no regrets in choosing HIFU. More later.
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

problem · Regular Joined: 12 Sep 2009 Posts: 43

Hi,
It's me again, no problem, and I can say that I am having sexual awakenings in the AM.

I am sorry that JerryB is having trouble, I feel I shouldn't post, as I am not having any troubles at all, quite sick of the catheter but feel I am a very lucky guy. I didn't do hormones, or have a TURP, which can be possible problems.

I am working in the yard, but not over zealous, as I've been told not to stress myself, I am the type not to take any chances.

I understand lihhnl, that the nerves can get traumatized, but don't worry, they'll come back, at least they weren't cut. You'll be fine, but do let us know. yes, patience. I remember that you had a TURP, maybe that caused or added to the effect.

Nassau was great, HIFU was better, Scionti is the master...

JerryB · Posted: Mon Nov 09, 2009 11:42 am Post subject: Re: Official HIFU thread

Hi problem

Good heavens, please don't feel you shouldn't post just because things are taking a little bit longer in my case. As I understand it, everyone is different in the speed with which they regain the ability to pee following HIFU. I have been assured that I have no cause for concern, and I'm happy with that assurance.

In fact, since my last posting, things have finally started to move, albeit only rather grudgingly. Since yesterday I have been able to pee whenever I have the feeling that I need to, although the stream is weak, slow, and short lived. Of course, there is urine remaining in my bladder afterwards which I drain using the catheter. However, this is progress, and I am sure that it will continue to improve overall, although I have been advised that this process can sometimes be two steps forward and one step back.

There is a posting at another website about a guy who had HIFU with one of these same consultants in the group where I had mine done. He was peeing well within two days after his treatment and had the suprapubic catheter removed after a week. That is excellent progress, and another example of how everyone is different.

I hadn't heard that having ADT prior to HIFU can cause problems. I'll be interested to know where that information came from. I did have quite severe BPH beforehand, which I think is quite likely to be affecting the speed with which I regain urinary function.

Like you, I'm starting to have sexual awakenings in the AM. That's very encouraging for two reasons: firstly it is hopefully an indication that erectile function will return reasonably well, and, secondly, it means that at long last the side-effects of my hormone treatment are starting to diminish Smile

Great to hear that things are progressing well for you. Keep it up (in every sense of the word)!

Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

problem · Regular Joined: 12 Sep 2009 Posts: 43

thanks Jeremy,

I find myself worrying about you! I just hope it's only swelling inside that is keeping the stream down, I'm angry that you tried to pee right out of the hospital! You need a leash, I've got mine, my wife! It's easier to follow the rules when one person is just doing all the thinking instead of doing the patient thing and also the thinking, all together.

But with HIFU, no matter the hold up you'll be fine. This is the best invention ever!

I"m still having sexual feelings in the AM, but no way am I going to let it go further with all this apparatus hanging around! Glad to hear you are coming down off the hormones! Did you need a TURP for reduction as well?

I hear that getting the catheter out as soon as a week can mean he will end up with a blockage within 3 months, no hurry to get it out!

I am clamped off for 7 hours today, as the doctor ordered. It's fanastic, peeing like a 12 year old again.

Glad to hear such good spirits from u jerryB!

JerryB · Posted: Sun Nov 15, 2009 4:25 am Post subject: Re: Official HIFU thread

14th November

Two weeks since HIFU treatment and things are progressing satisfactorily. The ability to pee normally is returning: gradually, sometimes frustratingly, but there is progress day by day. The discomfort in the end of my penis when peeing has reduced to level where it is only briefly noticeable. It seems that the inflammation in my prostate is settling down.

Isn't it interesting how we can take a lot of pleasure from small triumphs in life. Until this morning, after peeing normally, I have always felt that my bladder was not completely emptied, so I have used the catheter to drain out the remaining urine. This morning, I had a pee and it wasn't until about 10 minutes later that I realised it hadn't occurred to me to use the catheter afterwards.

Aside from this, there really isn't very much to report. The catheter incision in my abdomen is a little inflamed, but not infected. I guess this is only to be expected because despite taping down the catheter a short distance away from where it exits, it must be continually moving around as I bend, stretch, etc. I have been told not to use any form of 'lubricant' such as antiseptic ointment, just in case it should adversely affect the surface of the catheter. Warm soapy water is the recommended method of cleaning in that area.

Last Wednesday I walked 10 miles without any difficulties. I had been a little concerned about discomfort from the catheter, but having taken care with padding, waistband, etc it turned out not to be a problem. I normally walk about 25-30 miles a week, and I plan on resuming this from now on. Having said that, the weather here is awful at the moment, so I may just chicken out until it gets better!

I had an MRI scan last Tuesday. The scan supposedly provides higher definition images than normal because it was combined with an injection of Gadolinium which gives the treating physician and radiologist a more detailed picture of the internal organs, tissues, bones and vessels. I am eagerly awaiting the results of this scan, albeit with some trepidation.

It is now 6 weeks since the end of my three month period of ADT. I’m still getting occasional hot flushes and my libido is virtually non-existent. Aside from that, I get the impression that the other side-effects are gradually dwindling.

I don't yet know how long it will be before the suprapubic catheter can be removed. The urology nurses are being wonderfully supportive in calling me every few days to check how things are going. At a certain point along the line they will probably ask me to start carefully monitoring how much urine is left in my bladder after peeing. If the amounts remaining are low, I guess it will be time for the catheter to come out. This will be done by a District Nurse who will come to my home. I understand it is a very quick and simple procedure, and will be necessary for me to lie still for a period afterwards to give things a chance to close up a bit.

One way or another life is virtually normal.

Cheers, Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

problem · Regular Joined: 12 Sep 2009 Posts: 43

Had my catheter out today! am a free man! had to void until the required amount was left for the weekend. My G.P. is very interested in HIFU, he wants to keep constant tabs on me, maybe his PSA is climbing.

My nurse explained to me that my bladder is only a muscle, so I had to void, empty the bag and then she kept me busy talking while she cut the strings and pulled it, I didn't feel a thing. She put pressure on it for a second and then a bandage, it didn't leak.

I am a member of the two belly button club!

JerryB,
My doc also said to only clean the cathteter and site with plain soap and water, no ointments.

Glad to hear you are progressing, are you taking ibuprofen? as it is supose to reduce inflammation. I understand now that if it is junk in the urethra it would be painful, and so you must just have inflammation, great!

no problem:
58 y.o. PSA 12. Gleason 3+4=7 biopsy showed 5 cores positive
HIFU

JerryB · Posted: Wed Nov 18, 2009 5:32 am Post subject: Re: Official HIFU thread

Hi no problem Smile

Good to hear that you are free of the catheter. It's a funny relationship isn't it. In one way you look on it as being a friend because it allows you to void if you can't normally, and on the other hand it's a damned nuisance. I shall certainly be pleased to see the back of mine. It's good to hear that removal of the catheter is a non-event. Several other people have commented in the same way.

Things have continued to improve steadily for me since I first started to be able to void normally 11 days ago. I was talking with the urology nurse yesterday and she thinks that my catheter will probably be able to come out early next week. Ever since I had the HIFU treatment there have been small particles of tissue in my urine, but over the past three days or so these have increased considerably. Quite often they are fairly large in size. I'm told this is a good thing: better out than in!

I was taking Ibuprofen until a couple of days ago. After discussion with the urology nurse we decided that I could probably stop it as it seems as if the inflammation in my prostate area has subsided substantially. I don't know about you, but during the early post-HIFU days I found that my lower abdomen - in the area of the suprapubic catheter - tended to be a little distended. As the prostate is located immediately below the bladder I guess this isn't surprising. Anyway, over the past few days that slight distension has subsided.

Last night was the first night when I didn't use the catheter bag. Up until then I had felt it was more important that I should get a good nights sleep than attempt to void normally. Last night was OK; better than I thought it was going to be actually. I got up five times during the night, but I had half expected it to be more.

Are you experiencing any incontinence at all? I have just a little bit; hardly enough to bother about. It seems to vary - sometimes nothing, sometimes a bit more. I'm confident that it will settle down fairly quickly. Aside from anything else, having the catheter tends to irritate the bladder, which presumably makes everything a little bit more 'twitchy'.

On the ED side I am now almost routinely experiencing partial erections during the night which I regard as being a very encouraging sign. Bear in mind that my libido is still at rock bottom because of ADT so if I'm getting partial erections when I'm not really interested that bodes well for when interest returns Smile

I'm looking forward to joining the two belly button club.

Please keep us informed about your progress. I guess you, like me, will be having your first PSA test three months after HIFU?

Cheers,

Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

lauriejo · Posted: Wed Nov 18, 2009 9:03 am Post subject: Re: Official HIFU thread

I am happy to hear you guys (Jerry and Problem) are doing so well. My husband is 100% 2 months post HIFU. I find it infuriating that HIFU people are relegated to one thread. Makes you wonder why we have to keep this minimally invasive treatment of cancer to ourselves. What a shame that these poor guys are being sliced and radiated when they don't have to be and left with debilitating side effects. I feel sorry for them, but alas we can not save the world. What really bothers me is that the percentage of men diagnosed with prostate cancer that die from prostate cancer is something like 30%. Would you say that is excessive over treatment of a disease? I hate to think that it all about the bottom line, but I wonder.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

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