Post-PAE MRI Shows "7m abnormal signal"

Thanks Paul. I was considering Holep as an option before I learned to do self-cathing while waiting for a new BPH procedure to be invented. We must have the same prostate as my recent psa was 16 and a free psa of 5% too. How are you doing now after Holep?

All the best to you. Neil

re : How are you doing now after Holep?

? - all good.  I've written about it in quite a few other posts.  You get a few weeks of inconvenience if my experience (NB only a 22cc prostate) was typical, and a lack of sensation when ejaculating from week 7 to week 14 (initially, a complete lack!!), that got better linearly over that period; it is more or less back to where it was pre-Holep, now.  Until recently I was still getting up once a night to pee; lately a minor stomach disorder, GERD, has discouraged me from drinking (green tea, that's all I ever drink apart from water) within 2 hours of bed-time (which I knew I shouldn't, but somehow lacked the willpower), result : I now sleep right through !  (the GERD is being treated and should resolve, it's apparently a common condition - but I will use the issue as a spring-board to never drink or eat near bed-time, just like I used the prostate cancer scare as a spring-board to permanently adopt a semi-vegetarian diet, eatings lots of anti-cancer foods - see my arlier posts - and stop all red meat and bad foods for good).  So I reckon it to be a good success.  The PSA fell from 16.92 to 0.66; I can only thank HOLEP for about 60% of that reduction (I now have estimated 10 cc of prostate tissue left); the rest of the reduction must be due to past inflammation largely self-resolving.  At least the inflammation ?can't now cause partial blockage, unless the thing grows.  It does occur to me that prostate cancer in the core (only 30% of cancers) would not so readily show up in a blockage in future, but I have a PSA test every 2 years anyway in a company-funded medical.  Pleased with the holep, glad I did it; Uro cautiously said it SHOULD last for life.   NB he had a good go at the top of the thing, which had been pressing up on the bladder, so as to be sure to deal with the frequency issue as well as the poor flow rate.  My flow rate now is 36 ml/second, I can readily "hit the back of the pan", and it is one wide strong flow as it exits, never two stupid separate mini-flows like before.  Peeing now takes me a few seconds, and ends very cleanly, no after-drip/dribble. 

?Paul

Thanks Self-help. I'll look into that - it seems all the latest technologies are in CA. Take care. Neil

Hi Paul - thanks for putting all that together. My MRI report did not come with a key so that is helpful. I must say we have very similar prostates since the reports are similar.

My previous biopsies were all because of high PSAs and they were random. They all came back negative but my wonderful uro would for always tell me that because of the size of my prostate "there certainly is cancer somewhere in there but only a turp will find out for sure" - nice guy!. 

I think all the biopsies were unnecessary because what is key is the PSA density which is just the PSA number divided by the prostate volume. Mine was always very low. For example, nominal antigen activity would suggest a PSA of 35 for my size prostate but it is half that.

I sent the CD from the MRI to the IR doctor who did my PAE and he will get back to me on Friday. Maybe the arteries he embolized are near the signal anomay seen on the MRI - I try to be hopeful.

Regarding the targeted biopsy you had done - was there any worry that if it was cancer you might be pulling cancer cells through the rectum and spreading them around? This was a worry with our dog who had bladder cancer and the vet wanted to biopsy the tumor through her abdomen.

Thanks Paul. How are you doing now?

Neil

I hope that it isn't cancer at all, but if it is, just keeping an eye on it is another consideration. 95% of all men with prostate cancer will die of something else. If it's small and hasn't spread, its a real option. Other than gamma knife, all of the treatments have a high incidence of pretty bad side effects - some worse than others but even radiation carries a 25-35% chance of impotence.

From what I've read, they can usually tell if a cancer is an agressive one (gleason scores, etc.) and if one isn't, the chances of dieing from it go down to the 1-2% range.  Just another opinion - hopefully you don't have cancer and its not relevant.

as to "How are you doing now" : see my post about 3 hours ago. 

?as to "was there any worry that if it was cancer you might be pulling cancer cells through the rectum and spreading them around?" : I didn't have a rectal (TRUS) biopsy, I instead had a transperineal MRI-guided one as that can get better to the front (anterior) of the prostate where the main suspect area was.  However your concern is still valid.  I don't know the answer.  It must disturb things a bit mustn't it as the prostate bleeds which shows  up in your pee.  But there is no other way on earth to positively ID cancer (other than histology of HOLEP TURP or THULEP removed chips, those are only from the middle though and could miss cancer in the outer layer where it is most commonly found...).  Really all medicine is a bit barbaric isn't it !   A transperineal MRI-guided biopsy is done under general, unless you are brave enough for the spinal block thing; does anyone actually choose that ?  A transperineal MRI-guided biopsy avoids the small risk of sepsis. 

Thanks oldbuzzard for the kind thoughts and this information. I hope to speak with my IR tomorrow about my scans. All the best. Neil

Hi Paul,

Do you really think that there's a "small risk of sepsis" putting a needle 12 or more times through the non sterile wall of a colon covered with bacteria, and into a prostate? I can't think of a better way to cause sepsis.

Neal

I believe the risk of death through sepsis following a TRUS biopsy was found in a 2014 study to be 0.07%.  I read previously that incidence of sepsis following a TRUS biopsy is 2%.  The thing is, I'm lucky, perhaps you are too, and could access a trans-perineal biopsy that doesn't have the sepsis risk - so I did.  But you can't get that on the NHS (basic state medicine in the UK, for American readers), so a lot of people who can't afford to go private, will have a TRUS biopsy or for that matter end up having several - or they might not have it done at all, if they're too scared.  I'm not sure it's helpful to terrorise them about it.  Just make aware.  Had I not had private health insurance, I guess I'd have thrown the dice on a TRUS biopsy.  My uncle and a workmate both did, and were OK.  That 2% sepsis risk, assuming I am recalling that number correctly, is (I believe) same as the stricture risk (2%) from a HOLEP or a TURP. 

Thanks stebrunner for your kind thoughts. I spoke with my IR doctor today who did the PAE and he said the suspicious region cannot be caused by previous biopsy scars or from the PAE itself. His recommendation was just to wait 6 months and redo the MRI.

After that call I arranged for a repeat of the 2 liquid biopsies I had done a year to detect prostate cancer at the molecular level (apifiny-plasma test and mips-urine test). I'll have those done next week.

Also I followed up on j12080's suggestion and contacted the IR doctor in Houston who does MRI-guided biopsies of localized dark spots. I uploaded the entire MRI-CD for his analysis (free!) and he will contact me for another assessment.

I don't think I've been this blindsided since I played high school football and was knocked out by a defensive tackle just as I was about to throw for a TD!

Thanks again for your kind words.

Neil

Good news. I think if the prednisone has you peeing normally, once you do something about the prostate size, you should be good to "go".

Hi Neil,

Congratulations on the biospy result! It must be a tremendous relief.

Where did you end up getting the MRI if I may ask? 

I'll tell you, Dr. K. and his focal laser is so tempting I almost wish (not really!) I was a little more symptomatic. I say that because I think he could probably finish off whatever remaining symptons I have, but on the other hand any surgical procedure has risks and that's why we have to weigh risks versus rewards. In other words, I could easily live with my current symptons but I would have a hard time living with myself if I did a procedure and things got worse. But if my IPSS was a 30 plus, like three years ago, I would be knocking on his door.

Hopefully, the upcoming trial results will be consistent with John's result, but we have to keep in mind that so far we have only heard one result from Dr. K., and that is John's. 

-- Jim

Hi OB,

There have been just a few studies on short term steroid therapy and LUTS symptons, on a post operative basis. Results mixed but seem to lean toward temporary improvement. However, the analysis is only by sympton score. What would be interesting would be a before and after comparison of imaging (and possibly video urodynamics) to better understand the mechanism and also to see if prednisone's anti-inflammatory properties work on just the prostate or perhaps the bladder as well.

Jim

Jim

Hey, Neil,

It's happy dance time! Thanks for sharing your good news! I was thinking about you this past week as I headed to Seattle to have my bladder stones removed. I'm thinking of contacting Dr. K myself. I asked my PAE doc if I should consider a 2nd PAE, and he discouraged me from it. He had seen my CT scan taken 5 months after PAE.

My stone removal went exceptionally well. The surgery was done at the Kidney Stone Center of the U. of Washington Medical Center by a young, female urologist. She was fantastic--and she listened! What a concept! She proposed taking my stones out via my abdominal wall--similar to having a suprapubic catheter put in. (An option my local uro never suggested.) Turned out that my PAE reduced part of my median lobe, and she was able to remove them through my urethra. No complications. Easy recovery. My urethra is still very sore, so I take my time with CIC.

BTW, she was impressed that I've been keeping a CIC log, and she said keeping my bladder volume below 400 ml was a great plan. Onward and upward!

Stebrunner

Hi Jim, Steb and OB - thanks for your kind wishes. I never thought I would be in that position where a binary event like a phone call could change my life.

I am glad your bladder stone removal went well Steb. I will keep that info in case I ever need it.

Jim - I had my mp3T-MRI last Fall at the Saint Joseph Mercy Health Center in Ann Arbor near Detroit. They were great to me and gave me 2 CDs within an hour of the scan. I uploaded one of them to Dr. K in my initial contact.

You also raise an interesting point about whether prednisone just reduces my BPH inflammation or also acts on the bladder wall. It would help interstitial cystitis in the urothelium but I don't have that. But oxidative stress in the detrusor tissue and lamina propria could cause inflammation which might respond to steroids. I agree that would be an interesting study.

Dr. K has done several FLAs for BPH now but I don't know how many. He did one the day before I got there and another one this week. Before I committ I will want to know how many for sure and speak to some of the them if I can.

It really was an eye opener getting a tour of my MRI images by an expert. When I asked him to point out the various zones (peripheral, transitional etc) he just laughed. He then brought up the image of a normal prostate and placed it beside mine. He said that my entire central and peripheral zones were compressed into 1mm under the capsule!! So the whole image was just glandular hyperplasia of the transitional zone. It was really depressing. He then flew me through my prostate in 3D. It was like watching an Alien movie when the monster comes out of the victim's abdomen! More adenomas kept appearing and disappearing. It was really scary to see. And this is with a 180gm - I cannot imagine what it was like at 280gm! I don't know where this disease came from but seeing it up close and personal made me realize at some point I will have to do something. Thank goodness for CIC which buys some time.

The lesion also looked scary. It was pushing up against the capsule and distorting it. I asked Dr. K how he would ablate it and get good margins if it were cancer. He said he would have to take out part of the capsule!

So I guess I will see how things go for now. But if I do something for the BPH at least now I have the doctor and the procedure.

Oh - I forgot to mention that the biopsy cost $2200.00. It was not covered by Medicare because the uros claim it is not necessary to use an MRI in realtime to target a focal lesion. They claim just using an old MRI scan to guide the ultrasound is sufficient!! Dr. K showed me how impossible that would have been to achieve with my 7mm lesion on a 180gm prostate so for certain I might have got a false negative since they would certainly miss it! Those uros!!

Take care and thanks again.

Neil

Hi Jim,

There was another issue which came up during my visit. You may recall I often mentioned that I always have a feeling of not being completely empty after cathing. A few weeks ago I asked my continence nurse if she would measure my PVR right after I cathed. My NV was 200ml and my CV was 250ml. Then I lay down and she measured my PVR at 6 points in my bladder using her little device (I assume u/s but did not ask). Anyway at 5 points the measurement was 0 but in the trigone region it was 75ml! I then went back to the bathroom and did another cath but got nothing out to speak of. She told me not to worry about it.

When I saw my MRI images with Dr.K I noticed that my bladder neck region was pushed up into the bladder a little even though I do not have a well-defined median lobe. Since that was where the catheter enters it seemed that a circular depression or moat was formed around the urethral opening into the bladder. So this suggested to me that perhaps the catheter misses this urine since it enters above it and that is what my nurse had measured and why always feel there is a residual and also why my second cath does not pick up any more urine.

I asked Dr.K about this but he is against CIC since he says it does mechanical damage to the urethra and I should have not progressed in my disease to where I needed to do CIC. On this point I do disagree with him.

Anyway what do you think of this as the source of the residual after CIC? I've tried to think of various gymnastics to test this but maybe I should just not worry about it as my nurse said though it is curious.

Thanks

Neil

Hi, Neil, Alan here. It's been some time since we were last in touch.

I have a similar problem and been told, "Don't worry about it". As the urine flow begins to taper off I feel (almost hear) this loud thunk and flow cuts off completely. I withdraw the catheter until it is clear of the inner (bladder) sphincter and then rotate it about 1/4 turn to reposition the eyelets before reinserting into the bladder. This often gets me another gulp of urine. Does this match your experience, Neil?

For the record, I'm using a straight FR 16 SpeediCath.

Hi alan,

Yes that describes my experience exactly. I always find it a little uncomfortable when the pee suddenly shuts off and instinctively let out a little gasp. At that point I try rotating the catheter and leaning from side to side to get a little more out. Also I have tried what you do and pull it out an inch or so and put it back in. I can also see when both eyelets get inside as the flow rate increases a lot.

I am using the Speedicath 14 coude tips hydrophilics and add additional gel lubricant for a smooth ride.

I guess the abrupt shut off is ok and common. Sometimes when the flow rate is slowing and I know the end is coming I will clamp down a bit on the catheter to avoid the abrupt shutoff and that does work but it probably leaves a little more urine inside.

Take care.

Neil

I actually think your doc is right - you should do something. Cic to rehab a bladder is one thing, but doing it because its the only way to void around an obstructive and growing porstate is another. One day, it might get so bad that you can't get your cath around it and they you're looking at emergency surgery, possibly something invasive with side effects vs. an outpatient procedure with no anesthesia and a low incidence of side effects. You're a ticking time bomb and you can't even fully void with a catheter. I'd look at FLA (you have the right doc and while they don't have much experience with it for BPH, they do with cancer so you should be able to guage the risks), PAE, Rezum and Urolift. You may not be a candidate for some becuase of your prostate size, but better to look at this when its 180 than when its grown back to its former size.

Just my opinion - an elective procedure today might pre-empt an invasive emergency surgery tomorrow....

Neil,

There are basically two types of bladder scan units used in doctor's offices. The first shows a real-time ultrasound image and the second only shows a bladder diagram (for probe placement purposes) with a digital read out for volumes.

I'm assuming the nurse had the latter, because if she used the one with the real ultrasound image, then she not only would have to have taken one scan, and more important, you would see exactly where the urine was (or was not) pooling rather than have to deduce.So, if you want to pursue this further, either find a uro with a real-time scan in their office, or have your doc write you an rx for an ultrasound study at the hospital where they will do exactly the same thing your nurse did, except they will have an actual image of where any left over urine is. Just make sure he specifies the purpose of the imaging study or they will pump you up with too much fluid prior so that they can get a good look at you bladder wall, etc, which is not overly relevant here and has the downside of your kidneys unloading into your bladder in the window between where you cath and get back on the table for the scan. So, in your case, the possibility does exist that the 75ml is not residual as you suspect, but rather new urine production between the cath and when the nurse took the five images. The kidneys can unload faster than people think especially if they have taken in a lot of fluids.

For discussions sake, assuming your deduction is correct, it's probably not something to be overly concerned about. (I have a bladder diverticulum (pouch) with similar issues. On the other hand, depending on the depression, it might be possible to empty the trigone area through technique modification of possibly even the gymnastics you mention. Problem is you probably won't know -- other than feel -- if successful unless you go out and purchase your own portable bladder scanner. I've been looking into that myself as a way of checking PVR at home from time to time since I don't cath daily. 

As to Dr. K's comments on urethral damage, they are without any basis but not surprising as most uro's know little about CIC and I imagine an IR would know even less. His take on "progression" and CIC is also typical of most doctors who feel surgery is always the best answer. Not to say he isn't an excellent IR with what seems to be a potentially great procedure, but that doesn't mean his knowledge and expertise carries over into other medical areas.

Jim

 

Hi Jim and OB,

I agree on all your points. Maybe I should get one of those inversion boards and when I finish CIC upright then invert my position and the residual urine will flow to the top of the bladder and I can access it with the catheter - but wait then I will have to suck it out against gravity - never mind! I am just not going to worry about it but I did want to mention all this to you for general interest.

I eblieve that unless someone has personally experienced the great benefits of CIC he is not really quailified to comment on it. My continence nurse repeatedly tellls me that CIC is the best course of action for me over the long haul as she has seen the downside to many invasive procedures.

Dr. K did show me on the computer how he would do FLA on me. He first inserts a Foley all the way so that he can clearly see the urethra on the MRI. Then he proceeds the same way he did the biopsy by inserting a probe sheaf through the rectum until he reaches the tissue near the urethra. He does this by repeatedly putting me in the MRI and watching the images and then pulling me out to reposition the probe. He did this about 8 times during the biopsy. Then once he is happy with the positioning he inserts the laser which has a difuser tip and ablates what he calls a 3D grape of tissue. Then he repositions the laser again using the MRI slightly overlapping the first grape and repeats moving along, around and away from the urethra until he is happy witht amount of tissue removed. He said in my case there would likely be decompression of the prostate with more tissue moving towards the urethral region. This is why it would take from 3 to 6 hours to perform. He also monitors temperature in a 3D sphere around the ablation zone and uses cooling fluids in the probe to ensure there is no damage to the nerves and urethra.

I certainly will have to consider it in the future but it does not get at the cause of my problem. And how durable is it?

Dr.K did discuss PAE at length and showed me on my own images why it is not durable. He showed how PAE reduces blood flow throughout the prostate but does not target the tissue adjacent to the urethra in the constriction zones. So it will reduce prostate size overall, as in my case but often w/o sympton improvement as in my case whereas his method just ablates the compressing tissue directly. It does make sense to me and has advantages in not being transurethral but not just yet.

I did not qualify for Rezum or Urolift because of my size. I had thought of a second PAE with Dr.Bagla but once I heard about the increased incidence of PCa from PAE (which Dr. K. confirmed quietly) I will not do that. Strangely when I sent my uro in Detroit the good biopsy report all he wanted to know was when I wanted to schedule my robotic SP with him! Gee whiz!!

Take care.

Neil

Hi OB,

We will have to agree to disagree here. Yes, CIC potentially can rehab your bladder, but using CIC to "void around an obstructive prostate" is also an excellent strategy as either an alternative to surgery or as a way to prolong "watch n' wait" until something better comes along. 

That's my case. I have an obstructive prostate which certainly isn't shrinking. I chose CIC as an alternative to surgery. Been doing it for over three years now. The bladder rehab part was a nice bonus but not the intent.

As to your ticking time bomb example and potential "emergency surgery", while I suppose anything can happen, I see no basis, nor have read anything in the literature, to suggest this as a concern. 

First, catheters are designed to go around obstructive prostates. VERY obstructive prostates. Second, growing prostates do not necessarily mean more difficult catherization. In my case, it's easier to cath now than three years ago and I'm sure my prostate has grown some. And third, in the unlikely event -- and I underline unlikely -- that the prostate did start to interfere with CIC, it would not be immediate (like with AUR) but rather a gradual thing giving you time to explore other options. 

This is not to say I'm against surgery, be it FLA or other. Just want to make the point that CIC is a reasonable alternative to surgery either short term or long term and is not in any way creating a "ticking time bomb" that we should be concerned about.

Jim

 

Neil,

Listen to your cath nurse and not Dr. K. or (no disprect here), Old Buzzard. If you want to do FLA, great, but don't do it because you think you will be harming yourself or putting yourself in jeopardy with CIC. I'm sure she's seen more urethra's than all of us!!! I also think waiting a little for Dr. K. to have more patient data is not a bad idea.

So the FLA process is interesting. Is the patient awake for the 3 to 6 hours? How long is your head in the tube? For some reason I was picturing a "real time" MRI (probably technically not available) rather than an "in" and "out" scenario which I assume involves having to be very careful not to move his laser probe after the image is taken and when he ablates. 

Jim

Hi Alan,

If you're following standard procedure, you are inserting the catheter about an inch further into the bladder after the urine starts flowing. Then, when it stops, you are gradually pulling it back to drain from that bottom inch the catheter eyelets couldn't get to because they were above it. 

So, is it possible that the "clunk" you are hearing is actually when the catheter eyelets hit the sphincter itself on the pulling back process, therefore physically blocking the catheter? I personally have found it very difficult to differentiate that fine line between the bottom of the bladder and my sphincter so sometimes the catheter will just fall out of the bladder when pulling back.

If not, other strategies to more fully empty the bladder are rocking the hips back and forth to move any remaining fluid into a position where they will be siphoned off more easily. 

But, like you were told "don't worry about it". While you should try for empty, a little left over is not that big a deal.

Jim

Hi Jim,

No need to remind about the greatness of CIC. I am a convert for sure and owe it all to you. You rescued me from the precipice last summer when I was out of options and my uro's nurses were hammering catheters into me. Your dive bomb method really saved the day.

I too wondered about the inbore procedure. I initially asked Dr.K if he climbed in there with me! He said the so-called MRI-guided fusion procedures are bogus because they are just glorified ultrasounds.

With his procedure I am lying on my stomach with my head just outside the far side of the MRI and a nice cool breeze blowing down on me. I was not claustrophobic at all since I could see outside. This was the new wide-bore 3T-MRI which is about 70 inches long. I was given a light conscious sedation but I was awake for the whole procedure and never felt its effects. An hour afterwards my wife and I were sitting in a nearby seafood restaurant.

For the FLA procedure it is exactly the same except they give you a deeper level of sedation where you doze off. As far as movement of the probes during sliding in and out the table is vibration free and my legs and waist are secured. I did ask Dr.K that question given the precision of the procedure and he said it was not an issue with the new technology.

Also it didn't hurt that his lovely nurse held my hand at the far end to calm me!

We are on the same page w.r.t. CIC sure you!

Thanks. Neil

Hi, Neil.

Thanks for your response. We do seem to have a few things in common so I’ll fill you in on my side of the story.

At age 17 (1947) I underwent a rigid cystoscopy after experiencing kidney stone in the bladder. I tolerated the procedure reasonably well so, at the invitation of the urologist I agreed to undergo a few more in the presence of some medical students. One test involved observing urine dripping from the ureters, which could only be done by replacing the liquid medium (saline) used to distend the bladder with air. Upon my discharge I was given a few caveats.

There was likely to be some air retained in the bladder which would produce an unexpected sensation causing me to pull back to stop urinating. I must do all I can to override this perfectly normal reaction and keep the flow going; we must get the air out of there as soon as possible or I will end up with a bladder full of boulders!

Secondly, for the first few voids use a catheter rather than voiding naturally. This will prevent bubbling and keep mechanical agitation and possible weakening of the bladder neck to a minimum. Could your abrupt shut off cause similar damage? I know I have had concerns.

I monitored myself by CIC at regular intervals but no stones were found so we assumed that they had been expelled naturally. At this point I suspended all self-catheterization with no ill effects.

Fast forward to 2013 and I began to suffer from a stricture affecting the second half of the prostatic urethra. After several trials ended up with the Coloplast SpeediCath standard hydrophilic FR16. This took care of my urinary retention, my stricture, and my ED.

I want to try your idea of adding lubricant. Trouble is that I somehow manage to become a “lubricated mess”! I’d welcome a source of pre-packed lube, free of lidocaine or other analgesic, packed in a single dose squeeze bottle or other packaging that will enable me to instill a 5cc dose directly down my urethra.

I’m also searching for extra-long catheters to cater for my unusually long urethra.  24 inches overall length or greater, up to 18 FR, straight, intermittent or indwelling. The ones that were available a few years back have all been discontinued.

And that is about it. Actually, no. I have  also been “floxxed” so my writing is slow and full of errors. My apologies!

Warm regards. Alan.

Hi Allan,

That is an interesting story. Jimjames is the catheter expert and I knoww he will want to respond to you questions about catheter lengths and so on.

I use the Speedicath 14FR coudes hydrophilic ones but I found that there was not enough lubrication to get through my tight urethra. My continence nurse said I was rubbing off the mucous lining of the urethra which was the cause of the burning. Then with no mucous lining I got irritation and inflammation and the bacteria present had a place to latch onto and multiply and then move into the bladder. Hence my 2 UTIs both following really burning sensations when I inserted the cath. The mucous lining does regenerate itself after awhile.

So what I did is this: I got tubes of sterile gel lubricant called Surgilube though others will work too. Then when I attach the catheter to the wall I pull the tab down about a third and then carefully squeeze some gel into the top of the opening of the sleeve. I am careful not to touch the catheter and just let the gel drip in. Then i wait a minute and gel slide down the whole length of the sleeve and coats the catheter. Since the gel is water soluble and the catheter is in a saline solution the gel readily melts and forms a really nice additional layer of lubrication. When I pull out the catheter for insertion I pull it slowly.

The whole process really works nicely. Now I do not get any burning sensation at all over the 2 minutes it takes me to insert the catheter. The last UTI I had a few weeks ago was because I ignored the burning sensation and kept going. The gel was too thick because the bathroom was very cold at 3 am. Now I put the tube in a warm glass of water as I prepare first with an NV. From now on if I feel any burning during insertion I will pull the catheter out and start over with a new one and more gel.

Here is a funny aside. On my trip to Houston the airport security was alerted by my tubes of gel in my bag. Three agents huddled around my bag asking what this was for. I showed them my tube of catheters and explained but they were not convinced. So when I offered to show them how I do it they all gasped NO! and sent me through!!

Take care.

Neil

Hi Alan, 

Surgilube makes single use packets for sterile catheter lubrication. I found them to be very good. You can use barrel syringes to get the lube into the urethra, however if you want it to go in deep, you will either need to jerry rig an extension with some catheter tubing, or see if you can find the lube pre packed with syringe and applictor. I've seen the latter but I believe only with a lydocaine type gel, however, you could purchase one, discard the lidocaine and just use the injector. I did see an xtra long catheter recently but can' remember where. Possibly at the Manfred Sauer site. 

Jim

Alan,

Cure medical has a 25" straight tip catheter called the Cure Pocket XL. Not sure if they have a Coude version.

-- Jim

Hi, Jim,

Thanks for the leads. Manfred Sauer was correct.

They suppy catheters in lengths up to 17 inches (43 cms). This would help considerably and I willl be researching this one in more detail.

I have already tried Surgilube and found that I am not compatible with their bactericide, or something. About 15 minutes after ending a cath session I experience rather violent stinging. I thought I was being too rough inserting but eventually discovered it was the lube itself.

I currently use a lube imported from Belgium supplied in 5 grm sachets. I start by wiping the sachet with 70% rubbing alcohol, removing the syringe plunger, squeezing the satchet contents into the syringe barrel, replaceing plunger, and finally expelling as much air as possible. It works, but it can be messy, particularly if I havent managed a reasonably firm erection! I could do with three hands but have to settle with the two I have. However I have a couple of ideas I got from the Manfred Sauer site.

Many thanks. Alan.

Thanks for the info neil. Dr K mentioned that PAE isn't durable. I'm curious howdurable FLA would be. With FLA he takes out the part of the prostate what is pinching off the urethra, but what stopping the prostate fro growing back. With HOLEP Turp, etc the core of the prostate is removed which sucks but there really isn't much that can grow back.

Hi Alan,

Yes, did you see under "ISC aids" on the MS site, the foam rubber penis support? It basically works as a third or fourth hand. I did bladder irrigations for awhile and definitely could have used an extra hand. 

Sounds like you're injecting from a barrel syringe without an extension? If you get or jerry rig an extension (possibly use another catheter) you should be able to get the gel in much deeper and therefore more lubed surface and less mess. PS In case you missed it, I posted on an earlier post that there's a 25" catheter by Cure Medical.

Jim

Good point UF. I believe durability was an issue with some of the earlier less invasive treatments like TUNA. At 20K per pop, a very good question.

Jim

I use to follow 2 clinical studies by 2 companies that use single injections into the prostate (once a year they claim) to reduce the hyperplasia associated with BPH. Both studies were in the double-blind control stage. They both showed a significant reduction in IPSS scores over the study period. The problem was that the control group showed similar reductions in the scores. One company asked the FDA for a 6 month extension because they claimed the placebo effect could not last that long!

So if the mind is capable of such things then maybe we should just get annual hypnosis sessions once a year to reduce our scores and improve our symptoms! It may be as durable as any other procedure!

Neil,

I believe you or someone else may have brought these studies to our attention earlier. An alternate hypothesis to "placebo effect" is that it was the needling into the prostate itself -- and not the solution being injected -- that produced significant benefits. That would account for both groups with similar results as the placebo group had the same needling. I think I read somewhere that this hypothesis is also on the table for further study. So, maybe forget the hypnotist but cal the seamstress.

Jim

I'm seriously considering FLA for my prostate issues. I doubt that procedure will ever be covered by insurance. That said it really seems like the way to go. Since FLA leaves quite a bit of prostate tissue being it logical that it will grow back. On the other hand maybe the laser destroys the tissue so it can't regenerate.

I posted about one of those studies a week or 2 ago. The mods deleted my post because I mention the drug and the company making it.

Hi uncklefester,

I agree insurance will never cover it if the uros have anything to say about it which they do. I discussed the durability issue with Dr. K at great length. He just doesn't know. But it has advantages over other laser procedures in that it does not go through the urethra and stays away from the nerve bundles and sphincter muscles so there should be a faster recovery (like John) with less side effects (like John).

He tries to remove a lot of tissue right in the constriction region. One point DR. K emphasized to me was that he gets a full bird's eye view of the ablation in 3D in realtime as he proceeds whereas transurethral procedures like GLL, Turp and others can only see through the scope directly in front of them so they get a very restricted view of the ablation zone and surrounding region.

He said for large prostates like mine it is very valuable to see the whole prostate as he proceeds as he can target much of the restricting tissue without affecting the urethra since he goes in transrectally like my biopsy.

He said he would keep going until he was satisfied the urethra had been decompressed. But it still does not address the cause of the hyperplasia so over time we can all expect the tissue to regrow. Only aggressive procedures like Holep and simple prostatectomies can assure it will not recur but then the side effects are awful.

I have thought of trying a simple procedure call the Gat Goren procedure which is just a simple embolization of the internal spermatic veins which they claim are faulty and cause free testosterone to bathe the prostate at high concentrations which cause the BPH. I know guys that have had it and claim a cure from BPH but I am not sure.

So I like FLA the best and Dr.K the best but want to speak with more guys like John.

Take care.

Neil

As you say the ablated tissue will not regrow of course but the rest of the gland continues to produce new adenomas constantly which will again compress the urethra over time. It was something to see them in 3D as he flew me through my porstate. It was like watching summer cumulonimbus clouds bubble up in a hot afternoon sky. Anyone of those adenomas were the size of a normal prostate. I don't know how it can be stopped short of removing the guts of the prostate.

Maybe it would be advantageous to take fernastride after FLA.

Hi JJ,

I see your point, but based on your ability to void pretty normally allmost all the time, it would seem that your obstructive prostate is nothing like Neil's, which makes it unable for him to pee at all. Yes, catheters are mde to get around big obstructive prostates and he SHOULD have some warning in progressive difficulty if his grows to the point that even cathing gets difficult, but sometimes with obstruction, one day something is open and one day its not.

Without a procedure, for sure cic is the way to go for Neil (pun intended) and I'm with you on its advocacy in general. But I've also seen prostates grow to become really big problems that can only be solved with big surgeries. They are doing REzum on big prostates now (if your doc in MI can't/won't mine at the Cleveland CLinic will) - not saying you should do it, just saying its an option - and it takes less than an hour, vs. 3-6 for FLA.

Part of the problem is that most urologists don't understand how simple, safe and convenient cic is and can't really give valuable guidance comparing a procedure to it.

I assumed that my prostate would continue growing after Rezum (and all of the others too) meaning that at some point I would have to have it, or something else done eventually. Rezum took an hour and the addition of steriods so I can pee before the swelling goes down and being twilighted during the procedure takes any worry about doing it again. I also assume that there is a good chance that there's something better by the time I need another treatment. But I think its safe to assume that prostates treated with any of the less invasive procedures will continue to grow and probably need more treatments over time.

Thanks oldbuzzard for that info. Maybe you could private message me with the info on your doctor at the Cleveland Clinic. My uro in Detroit says Rezum is only good for prostates under 100gm so I would like to look into yours to be fully informed. Was it covered by insurance? How big was your prostate? I can still do natural voids on my own during the day pretty well (100 to 200ml) and my residuals are low at around 150ml when I CIC. But at night I am in retention by 3am and take out about 600 to 800 ml even though I CIC before bed at midnight. Also if I hold it in during te day for a few hours I go into retention. So I will also consider Rezum but thought it was not an option for me. When did you have yours? I can drive to Cleveland. Thanks. Neil

Hi Neal,

   Where did you hear about increased incidence of PCa from PAE?

Rich

I just googled "PAE and Prostate cancer" and saw many listings for the possible use of PAE in treating PCa, but none about PCa being a possible result of PAE.

Hi Rich - I've now heard it directly from 3 different IRs but each said it is discussed "quietly" or is "the dirty little secret about PAE". I said it should be published but was told the statistics are just now emerging as a trend and not an anomaly so maybe it will make it out. So all I can do is pass on what I here to you all. I had planned a second PAE with Dr. Bagla but will never consider that as an option, especially after my recent scare.

Neil

PMd you with the info.

oldbuzzard could you PM me the info also Thanks

Do any or all of the three IRs perform PAEs?

Could it be due to the same issue that I believe has been raised with finesteride. That because the prostate is smaller, cancers that were previously undetected become easier to detect?

Hi Rich - yes some of them perform PAE which made me really angry to learn this issue after the fact.

I was on finasteride for 5 years and then switched to dutasteride 6 years ago and remain on it. I hope to wean myself off it now doing CIC as the side effects are awful.

Dr.K does not believe in microscopic cancers picked up during blind TRUS biopsies. He says the chance of having such cancers are equal to our age. But when they become clinically significant then they should be treated. So if lesions show up in a DRE or scan but not under a microscope. I had 4 unnecessary TRUS 12 core biopsies in the past and all were unncecessary - just because my PSA went up a little.

I still believe I got my BPH from the first one in 1995 because of unclean conditions that gave me acute prostatitis - and just because my PSA was 0.9! In those days I believed everything the uro told me.

Ah, I can relate. I've had 3 biopsies, the first two random and I believe unnecessary. 

Did the IRs give you any additional info about the PCa connection? Would you be willing to tell me who you spoke with, either here or in a PM?

I'm scheduled for a PAE with Dr Bagla in late March, and further info on this would be very welcome.

Thanks.

Rich

.

Hi Rich,

They just said there was in vitro (lab) data to show that when the blood supply is reduced to prostate tissue from the peripheral region that contains indolent (quiet) tumors these tumors sometimes grow aggressively because their blood supply is cut off so they develop rapidly growing blood vessels to find more blood (angiogenesis).

They also told me that they were starting to see PAE patients present these same effects but there was no mention of the numbers.

I don't feel comfortable mentioning who told me these things because it was on the QT but I would recommend discussing it with Dr. Bagla.

Dr. K raised an interesting point while showing me my MRI images. He showed me the spotty regions throughout m prostate where dead tissue resided due to my PAE last August. My prostate size dropped from 280 to 180 so 100gm of tissue were removed from throughout the entire prostate. Yet my IPSS score remained in the upper 20s. He said suppose that 100gm of tissue had been removed entirely from around the urethra where the constriction occurs - would I have had a better IPSS score? Assuming my bladder is ok ( big assumption) then the answer would have to be yes.

So that is what FLA does compared to PAE. Dr. K does not do PAE even though he could as he is also a VIR. This is the reason why - the imprecise nature of the PAE procedure in that it somewhat arbitrarily tarhets the whole prostate and not the transitional region where the BPH resides. It might be worth talking with him before your PAE and discussing these issues including the question of indolent tumor transformation.

Of course his cost is very high compared to Dr. Bagla which is a concern. If I do FLA with him I will have to forego the RV we wanted to buy.

If you need contact info for Dr.K I can PM it to you. He is very very talkative on the phone and will address all your questions.

Good luck.

Neil

Rezum and urolift are more targetted to the areas that are constricting the flow.

Thanks Neil. I've actually spoken with Dr K a couple of times (as well as Dr Bagla and Dr Isaacson). None of them have mentioned this new wrinkle. I had narrowed down my choices to PAE, FLA, and trying Cialis intsead of tamsulosin. Many pros and cons for each choice. I decided on PAE as it was less invasive than FLA, less expensive, and closer to home (my wife and I don't fly). Also, if PAE failed, then I could always do FLA.

I think I will contact Dr Bagla and Dr K to discuss this new info. Thansk again!

Rich

Hi OB,

I did get a note from uro in Detroit and he said Rezum is only approved in the US fro prostates less than 80gms. He added he now does a procedure called Coretherm for large prostates. I looked it up and it just TUMT with some bells and whistles. I would think FLA has it all over this procedure except the cost. Seems to me as long as the uros are in charge no IR-developed procedure will ever get approved. My uro did not even express good wishes on hearing about my negative biopsy because I had it done by an IR (Dr. K) and not himself!

Take care

Neil

Hi Neil,

Dr. U told me that he's doing them on bigger prostates now - could be a trial, but you'll find him to be a lot different than your Urologist in a host of ways. You don't live that far, I think it would be worth it to see him; its quite possible he could do Rezum if you wanted it.

And good luck - let me know how you do.

Thanks OB - I will follow up on your suggestion and let you know what he says. Thanks. Neil

My uro did not even express good wishes on hearing about my negative biopsy

Gosh that would make me mad. Too bad IR procedures are taking a back seat to uro procedures. My old German boss used to say " I didn't grow on my manure " when someone shot down a good idea simply because they didn't think of it. 

I just talked with Dr Bagla about the concern that you raised regarding PAE and prostate cancer. He said that that is absolutely false, and I offered to put his full response here on our discussion thread. Here it is:

First, there is NO scientific data to suggest or support this claim. 

Second, having done this for more than 5 years on more than 400 patients, I have never encountered this.

Third, while speaking at national meetings and talking to world experts who also have performed hundreds of procedures, this is never been reported as well.

Further, I have never heard of such study or pre-clinical work that this individual is talking about.

The suggestion that an embolization would be the cause of cancer is ludicrous. I would imagine that the person posting this has no scientific validated sources or professional sources who would stand by this opinion. Should anyone need clarification, I would be happy to not only personally talk to them but I am willing to put my name behind this opinion.

While chat forms may be a useful place for people to share medical information unfortunately the Internet is also a place where people take advantage of others by posting misinformation and ultimately scaring the public.

Thank you 

Sandeep Bagla, MD

 

HI Rich,

Thanks for posting that info. I was only reporting to guys on this forum what I had been told by other doctors regarding PAE. Two of them are VIRs themselves who do PAE. So I was just trying to help others without making any judgements other than to say that had I had this information before my PAE I would not have done it. So it is up to others to decide for themselves. As a medical researcher myself the arguments made sense but that was my opinion. I was just the messenger so please "don't shoot me" . Good luck with your decision. Neil

No shooting here. But is is quite unfortunate that your sources are not willing to make public statements and share the study citations. It does, IMO, make the claims much more suspect, especially when contrasted with Dr. Bagla's strong and clear response.

Hi Rich,

The doctors I spoke with were not quoting studies. They were just speaking from their own personal experiences and private discussions with other doctors. It was mentioned to me because of the scare surrounding my biopsy and the location of the lesion being close to one of the embolizations. But few PAE guys get MRIs and if they do it is the 1.5T MRI whicih would not show lesions as small as mine. All the evidence is circumstantial at best and there is not nearly enough data yet to form conclusions.

But these doctors mentioned it to me on the QT since it is just an observation of theirs so far. Can you imagine the battles that would ensue if I had mentioned their names !

From my own experience in the lab though it is not uncommon to see benign tumors become aggressive when their blood supplies are reduced. They have a survival mechanism which turns on angiogenesis to rapidly grow their blood vessels and find a new source of arterial flow to tap into (like Dracula!). But it is a stretch from that to establish a causal relationship between PAE and indolent tumour development.

Having said that, my first PAE at UNC last August did not improve my IPSS score so I had planned to do another one with Dr. Bagla this Spring but after hearing this information I decided against it. But that is me and everyone has to weigh the risks for themselves of any procedure.

 

Hi Neil,

    Thanks fo your reply. I'd like to continue our conversation not with the thoughts of either of us altering our decisions, but on the off chance that others might be following the conversation.

     Some comments and questions:

    1. At one point you said that the docs you spoke with said there was in vitro (lab) data to show that when the blood supply is reduced to prostate tissue from the peripheral region that contains indolent tumors these tumors sometimes grow aggressively. I'm assuming that this data has not been published.

      2. Embolization of other organs has been being done for a long time. Is there any evidence from this history of embolization resulting in aggressive tumor development? A quick google searched did not turn up anything.

      3. I think the key phrase in your last post for me is: "All the evidence is circumstantial at best and there is not nearly enough data yet to form conclusions.". This is certainly reinforced by Dr Bagla's comment that in his extensive work in this field over the last 5 years he has never seen or heard reports of this.

      

Rich

Hi Rich,

I too wonder  why Dr. Bagla made no mention of this rumour. I don't doubt his integrity and honesty but I also feel the same towards the other doctors. Maybe they just talk over golf or at meetings!

1. The prostate is different from other organs that are routinely embolized in that it is a gland (part of the endocrine system ) and a very very vascular gland at that which means its tissues are blood hungry. To my knowledge it is the only gland that has had its arterial blood supply reduced in this way but I could be wrong.

2. It is well known that reducing blood supply to tumors, benign or malignant will cause the gene responsible for angiogenesis to be expressed ( as well as other bad stuff like inflammation, cell proliferation and so on). There are many efforts underway to find ways to turn off the blood supply all at once to the tumor while avoiding just reducing the supply which will make it very angry. A new procedure called Tookad tries to do just this for prostate tumors. Look it up as it is really interesting. It is approved in Mexico and Europe.

3. Here is my thinking about PAE aggravating existing tumors. There are so many variables. For example, how close does the tumor need to be to the embolized blood vessels to cause a problem? From looking at my MRI post PAE the embolization was very spotty and almost random throughout the prostate. True those dark regions represented necrotic tissue which reduced my prostate size but there was no symptomatic relief. PAE is not a targeted procedure and avoids the transitional zone where the BPH lives because of fear of embolizing the urethra.

But even if proper studies could be performed to establish the likelihood of PAE triggering an aggressive cancer I believe that probabilitly would be very small - say a few per cent at most. So it is like any of the side effects of drugs and procedures we endure for BPH which can be fatal but have very low risk. So we usually take those risks and it would likely be the same with PAE.

But having gone through the scare of waiting for that phone call which could change my life I guess I am really shy to try it again. I do not have a pre MRI to compare the lesion's existence with as well as its features. But even though it was not cancer it was a very strange region of enhanced angiogenesis and bares watching. It also was near the main embolized artery just outside the capsule.

It is all very fascinating but I wish we were talking about it as dispassionate researchers and not patients!

Good luck.

Neil

 

Thanks for all the info. You defintely have a deeper background with all of this than I do.

My thinking is similar to yours, that if there is some validity to this, then it would be a very low risk possibility. And I can certainly understand your caution considering what you went through.

One question that I still have is why if there is some possible evidence, that the doctors who you spoke with have not disemminated it among their colleagues.. Dr Bagla is one of the top docs with PAE, and it surely would have come to his attention.

I can only speculate. The relationship between doctors is very different than the relationship between  doctors and patients which tends be more like a parent-child relationship. I cannot believe that Dr. Bagla is not aware of these "rumours" so if he totally dismisses the information then maybe he doesn't want to alarm his patients by even referring to it. In my opinion that would make him an even more admirable doctor.

Good luck with your PAE and please keep us informed.

Neil

Hi, Neil,

Not trying to rush you or anything, but have you tried the IQ catheters yet?

Stebrunner

I can only speculate also, but I have a very different take than you do. Perhaps I am naive. I've spoken with Dr Bagla three times now, and I don't have the impression at all that he would issue such a strong statement publically and attach his name to it if he wasn't being completely honest. I would question why the docs you spoke with are not more forthcoming.

On another note, I do think the patient-child relationship, at least in my exeperience, has worn quite thin. I have been given incorrect and/or potentially harmful opinions by doctors more times than I care to remember. The many posts on this forum from many men about the problematic advice they've been given by docs also attests to this. It's clear to me that I am the one who must take full responsibility for managing my health care, and to consider doctors as somewhat informed, possibly biased experts who can help me in my decision making.

Apologies for the rant, but it's a bit of a sore point for me.

Rich

 

Hi Stebrunner,

I did try one but could not get it past my constriction - it just bunched up like the 12s and started to bleed. I am very happy with my Speedicath 14 coudes so will just stick with them.

Hope all is well.

Neil

Hi Rich,

I agree with all you write here. That is why this forum is so valuable - so we can all take charge of our treatments and learn  our options and not be victims to the biases of the doctors - especially the uros. Ken has written a lot about it.

I guess time will tell about the rumours surrounding PAE. One good thing about Dr. Bagla is that he performs an MRI the day before the procedure so at least you will have a pre-PAE scan for reference.

I don't doubt the honesty of all the doctors involved but it will require more data. It's like the claimed discovery of new particles at the LHC in CERN. Most often as more data is collected the "discovery peaks" turn out to be just noise and disappear!

Neil

Yes, forgot to add how incredibly helpful the men on this forum have been. Truly a blessing.

And, as an aside, most, but not all, of the unfortunate opinions that I have been given were from uro docs.

I don't think Dr B will be MRIing me before the procedure. I had one about a year ago, perhaps that was sufficient.

Rich

Neil,

Also, the paradox seems to be that the docs doing a particular surgery, treatment or procdure, are in most cases the most knowledgeable in that procedure but at the same time probably not the most objective due to their investment of time, etc. And like you say, opinions change. 

Jim

Hi Jim,

Yes - it reminds me of a similar paradox I encountered when working in the corporate world: the people we have to work with and colloborate with on projects are the same people we are competing with for advancement. ( leads to all sorts of nasty stuff).

Jim- I just want to thank you again for all your patience in teaching me CIC. It continues to be a real life saver and I could not have done it without your extreme patience over many weeks. You saved my prostate! Thank you.

Neil

 

Hi Neil,

Quite welcome. As an update, I haven't had to self cath for 2-3 months now, although several close calls which I literally "walked" off. But one good beer night (or too much fluid of any kind) could change that so while I don't carry them with me, my cath's are always on the ready at home just in case.

Only problem now is that although I *think* by now I'm pretty good at telling when I empty out, I can't be 100% sure since I'm not cathing. The only way to find out is either: (1) self cath; (2) visit the uro for a bladder scan; (3) buy a bladder scanner. 

If I were colonized the easiest would be to self cath. But since I cleaned the system out three months ago with antibiotics for a mild uti, I'd prefer to stay clean as I tend to get colonized just looking at a catheter! Currently don't have a uro that I can work with well, so have been looking around for my own scanner. There are some reasonably priced used Verathon units out there but unfortunately because I have a bladder diverticulum, I would prefer to get a scanner that displays an actual ultrasound image as opposed to just getting a digital read out like with the Verathon units. Of course, the ultrasound imaging units cost more!

-- Jim

Apologies going "off topic". Get email alerts so sometimes get confused what thread I'm in!

Hi Jim - that is amazing you have not CICd for 3 months! After your initial problems you really showed those uros - good for you.

 

Have you considered D-Mannose for UTI avoidance? I take it now and so far so good.

Maybe you could get a continence nurse to come by every so often and  do a scan. Mine came by last week Verathon unit in hand and again confirmed a post-cath residual of 70ml in the trigone region. It was one of those hand held units. She told me she paid over ten grand for it used!! I couldn't believe it!

Thanks and good luck.

Neil

Hi Neil,

I responded to your post in one of the self cath threads here:

https://patient.info/forums/discuss/self-catherization-issues-and-problems-552686?page=1&order=Oldest

Jim