Personal PAE at UNC Experience

That's a good question. Why not write Dr. Isaacson and ask him? I recall that Dr. bagla charges almost twice the UNC cost because he does additional MRI/CT scans the day before as well as more diagnostic tests to delineate all the relevant arteries but I can't imagine that would qualify the PAE for Medicare. Still it is important to remember that just because they accept Medicare it doesn't mean all the costs to you are covered. It has been my experience that in the end Medicare covers about half the actual costs which is why I got a supplement insurance.

Thanks 18R18 for responding ( what does your name mean ?). May I ask where you had your PAE done? Also please keep us updated on your progress. Thanks again. Neil

Thanks Bayliner for a great post - very encouraging. I did see the Holep study you reference and thanks for posting it. I encourage others to read it too. The problem with Holep on a prostate my sie is that they can do the morcellation and removal through the urethra. They have to remove the pieces by making incisions in the abdomen and then  surgically removing the debris. So the surgical part is not that much different than a robotic SP. Also the Holep procedure destroys the inner sphincter muscle as well as causing much urethra irritation since it is a transurethral procedure like turp and gll. A robotic Simple Prostatectomy does have these complications.

I've convinced my IR at UNC to let me have a 3T-MRI to assess the state of my prostate following the PAE. It will visualize the extent of the necrosis and on-going blood flow to the prostate. I hope as you say that I just need to give a lot more time but my BPH symptoms sure are worsening. Thanks for your post. Neil

Corrections: I seem to have a problem this morning with "not".  My message should read: " they canNOT do the morcellation and removal through the urethra" and " A robotic SP does NOT have these complications". Sorry. Neil

Neil so sorry it is not working for you at this point.  Tomorrow will be 10 months since I had the PAE procedure. 

Quick history.. 

1.procedure Oct 28th 2015

2.5 week later stopped taken flomax. was taking 2 aday

3.after 10 months my sex life has improved due to getting off flomax.

4. 90 % of the time do not get up at night to pee. 10% once nightly 

5. My flow is strong sometimes and weaker at other times. Trying to determine what is causes the difference. About 50% of the time it takes a few seconds to start peeing and almost all the time it takes extra time to stop peeing. Have been very careful to be sure I am finished. The process of peeing is weak to start then builds up to rather strong stream and then a weak ending with a slower process to be sure I am finished. This process for peeing has been the same for months. 

6. Considering where I was I am delighted with my present situation.

History. 25 years I have had some prostate problems. taken some medicine to help with the flow for over 15 years. Been on Flomax for maybe 10 years. Twice a day before the PAE. PSA was 12 before and 3.4 after PAE. Sonogram size of prostate 170 and CT scan size was 140. I have no idea the size of the prostate after PAE. Will require a self pay for a CT scan to determine it. 

Neil I am hopeful due to the size of your prostate that you will improve over time. 

 

Neil

FYI - Morcellation and removal through the urethra:

Google:

"HoLEP large prostate 300cc perform in high risk patient"

"HoLEP for 560g prostate - YouTube"

Hope you get good results from your PAE.

I am scheduled for TURP with my 100g prostate.  Mark

 

Thanks Mark - I was not aware of this information. I had looked into Holep last summer with a professor at the U. of Arizona who  told me that there would be too much debris to remove through the urethra and that for prostates over 150gm he extracts the debris surgically from the bladder - yick! I contacted the guru of Holpe in Indiana who also wrote me the same thing. So I will study the links you mention here - thanks.

Good luck with your TURP - when is it? All the best. Neil

Hi Neil - Sounds like you already investigated thoroughly.  Different surgeons must use different techniques.

My bipolar TURP is scheduled for 9/2, 6 more days, 6:30AM.  I am petrified with fear.  6 days large (3 way) catheter afterwards.

I have heard almost nothing but bad experiences regarding TURP on this site.  Mark

I wish you all the best Mark with your Turp - I know how scary these medical things can be. My uro has been trying to do Turp on me for over 10 years but I refused as my prostate is much too large. His response was he can always do more Turps later on! I think most of us on this forum are here because we are looking for alternatives to things like Turp. There must be threads devoted entirely to Turp here or elsewhere that aren't so negative and can provide good support like this thread has for my PAE. I do wish you all the best - maybe your experience will be so great that many will reconsider Turp! Take care Neil

Mark - I forgot to mention that I first came to this forum looking for men who have had robotic simple prostatectomies as I was then scheduled for one the end of June. But no one had had one and instead I got feedback on PAE which I had never heard of before. Long story short I cancelled my robotic SP and scheduled the PAE which I had about 3 weeks ago. The idea was that the PAE is a really simple procedure with no adverse effects ( to speak of ) and if it doesn't work I can always go back and do the robotic SP which does have a lot of potential for complications. I don't know your situation or what you have access to or what you can afford but I would generally pass on to others considering invasive procedures with the potential for adverse side effects to first try the PAE if they are not in an emergency situation. So far I have not had any benefit but maybe it will come because of my large prostate. But I walked out of the hospital 2 hours afterwards and never had any side effects so it was worth the try. Just my 2 cents worth for you. Good luck. Neil

Neil - Like you, I have been researching for something bettter than what the local urologists have to offer:  TURP or OP.  I have taken 5 months off work now, dilligently studying all of the alternatives.  Ironically, in the end, it looks like I am going back to the original offerring, TURP.

I have the problem of the bladder stones and ureter stone.  I just can not figure out a way to get rid of these stones before PAE.  The surgery would leave me in full retention+.  Then, I would need catheterization untill PAE substantially kicks in, if it ever does.  This could be a long time and I loathe catheterization, foley or self.

At least with TURP, the stones and BPH can (probably) be taken care of with one procedure.  It is a sometimes long, difficult recovery, with lots of risks.  I am hoping that it will not be that bad and that I can resume my life, sadly, not quite the same as before.

I am very tired from lack of sleep and can not bring myself to travel accross the world for urinary surgery.  One advantage that many men here have is a supporting spouse.  I am single, which makes all this, including traveling, so much more difficult and scary.

As in your case, my prostate at 100g is too large for urolift, a great option for others.  Likewise for REZUM.  HoLEP would be a better choice than TURP, even with RGE, but it is not offerred locally, and I am just too tired at this point to pusue traveling for surgery.

Robotic OP has advantages as you described, but I feel that it is a long, major surgery and the advantages over HoLEP are probably not worth it (IMHO).

What a horrible disease that we have to deal with.  I am hoping and praying that my recovery will be fast and not too horribly painful and with at most, only some loss of important functionality.  Then hopefully I can at least get some sleep and have at least a partially normal life.

Thanks for your well wishes.  Hope and pray that the outcome of both of our long journeys will be good.  Keep us updated.  Mark

Prostate cancer must be the most serious and debilitating cancer out there for males. Most of us will get PCa of some form. If left long enough, and we live long enough, it will kill us. While it is growing, it will get to a stage where it causes severe stream issues and or total retention, and lots of painful intervenion is required. Not enough funding goes into Prostate cancer, both malignant and benign. Sort of like a we are men,we are not worried...no, just bl$$dy terrified.

There are so many procedures out there for similar issues favoured by doctors. You just need to do the research and then make YOUR decision and go with it the hardest you can. Every attempt must be to totally remove it. One malignant cell left, and then the clock starts ticking again.

Good luck Mark with your choice and hope Neil makes a full recovery.

Geoff

Geoff - I do not have cancer, only BPH.  But even BPH, i find, is a very horrible disease when it gets to the point that you can not pee and need a serious procedure.  Mark

Why would you think that I have cancer?  Mark

Sorry Mark, I did not mean to imply you or Neil had PCa, just wishing you well for your recovery and Neil well with his choice of treatment. I just happen to tag my thoughts on PCa and its less deadly, but very debilitating cousin BPH.

I see many many comments from people with prostate issues, mostly with BPH, but still terrible outlook. I find it amazing that a series of tests, and their respective treatments have not been devised to decide that a man has prostatitus in its many varieties, or the different BPH issues. 

My radiologist said my prostate was enlarged, at 37cc. It is a baby compared with some of you guys. Though my general doctor said, just because it is less than 40cc, it can still be badly affected by my BPH onset. Not too sure what he means by this? Does my prostate simply grow with the BPH tissue?

Geoff

Geoff - I believe what your doctor is saying is that even prostates as small as <40g can cause BPH symptoms.  Some men have prostates that are 150g and can urinate fine; others have prostates that are 30g and have serious blockage.  Almost all men's prostates grow with age (BPH); some very fast, some almost not at all.  A very young man's prostate is typically about 18g, and 37g is still not very large.  But BPH is not cancer (benign).  Thanks for your well wishes.  Mark

Hi Mark - sorry for the delay as I just got up. I pee every hour from 11 till 5 am and then finally sleep after 5 for a few hours. I understand your situation better now and agree that PAE would not be suitable right now due to the stones. But I would not write off the robotic SP or even just a SP as they stay away from the urethra so you don't have the types of urethral irritation you get from transurethal methods like Holep and Turp and GLL and Rezum. It might still be an option for you if they could also address the stones you have. I have seen the  robotic SP performed and the doctor has such fine control that he can protect all the nerve bundles for sex so they are not damaged as well as protecting the inner sphincter muscles to rpevent incontinence. It is a 4 hour surgery but the doctor says it only requires an overnight stay in the hospital and the catheter comes out the next day. In Canada here the procedure is only approved for prostate cancer as there is such a demand but in the US it is also done for BPH. If my PAE fails I will have to do it. I wonder if the robotic SP can be used for stone removal as the doctor enters the abdomen through 5 small small incisions above the bladder? I'll look into that. Good luck to you - it is a tough journey alone and you have my prayers. Neil

Hi Neil - I was set up for a simple OP originally, but several second opinions were that a TURP would be better.  But the SOP did not sound as you describe; 3-4 days in the hospital, urethral catheter for 1 week, suprapubic catheter for 2 weeks, 20% chance ED, 90% chance of RGE.  Complete enucleation for better disobstruction and longer durability, were the advantages.  Maybe there is different types of SP?  Thank you for your prayers.  Mark

Hi Mark - I heard that too from my local uro here in Canada who also wanted to do a simple OP on me - he said exactly what you wrote here. That was why I researched the robotic da Vinci SP in the US and was told all the advantages it had over the open SP (manual one) that I outlined. Here in Canada the robotic SP is only approved for cancer patients so that was why I found a place in the US who would do it for BPH (at a big cost of course). Are you in the US? How will they deal with your stones with a TURP? All the best. Neil

Hi Geoff - the relationship between BPH and PCa is still an area of research. BPH is a benign tumor (adenoma) and grows along the irethra in the transitional zone whereas PCa tends to grow on the surface of the prostate in the peripheral zone ( hence the use of DREs to look for cancer). Only about 15% of BPH and PCa overlap in the same area. They both seem to stem from chronic inflammation and the thinking is that given enough time the aggressive hyperplasia of BPH will eventually express a mutant gene and start neoplasia leading to malignancy. But it is a very active research area today with lots of anecdotal evidence. That is why the PSA test can be misleading because high values can just be due to a large prostate. If needle biopsies are performed to look for cancer then these procedures themselves can cause inflammation which can cause other problems. There are liquid biopsies available now that look at the molecular level for prostate cancer markers in the blood and urine that are non-invasive tests. All the best. Neil

Hi Neil - What is the cost?

You stated previously that a robotic SP still has the disadvantage of RGE, which is unfortunate.  Did they tell you the chance of reduced erectile function?

The stones will be transurethrallly removed first, I am not sure how, but probably with a laser to break up the larger ones.  That followed with bipolar TURP.  It could be followed by PAE instead of TURP, but would require long catheter time.

I am so tired, I just want to give up.

One urolgist recently told me that for those who have good erectile function before TURP, they will have a reduction in function afterwards.  My research indicates that the laser procedures do not affect erectile function; one of the advantages of HoLEP.

Seen any benefit of your PAE yet?  Mark

 

HI Mark - giving up is not an option so you might as well forget that one.

My cost for the robotic SP in the US would be about $10K but if it works it is worth it. My PAE was that much with everything included and I have nothing to show for it as yet.

This is how I view the ED and RGE stuff - I just want to be able to pee again without it being on my mind 24/7. I have a bad disease called BPH - that is unfortunate but if I can restore my peeing and sleeping and quality of life and have to give up certain sexual things then at 67 I am happy to do it if that is the full downside to the procedures. After all it could be much worse - just visit the threads on PCa - so we are pretty fortunate. I've alreadt noticed a certain reduction in my erectile fn since the PAE but I don't care anymore - I just want to sleep through the night and not have to map out every bathroom when I go somewhere.

It sounds to me like your uro is a good guy and has your interests at heart. We all wish you the best - hang in there - we are all a band of brothers. Neil

 

Thanks Neil - I have had much the same thought as you about the dominance of just bring able to pee and sleep through the night.  That is why I am signed up for TURP, rather than spend more time/effort for something better.  This, even though my life plan is to find a wife soon.  I pray to God that I will have a good outcome and be spared the side effects.

The other consideration is that the longer my bladder is stressed, the more problems I can have in the future.  I have already been researching for a long time, and probably should not wait much longer (as stressed by my surgeon).

Thanks for your words of encouragement.  Best wishes.  Mark