Post-PAE MRI Shows "7m abnormal signal"

Correction: last paragragh, fourth sentence, should have read:

" If anything it probably got bigger" (not better)

Hi Jim - I can always count on you for new insights - thanks.

You make a good point about the weak bladder tone and my IPSS still being up at 30 even with a good response to PAE.

But back in the summer when I went into AUR and didn't know how to self-cath I would take prednisone for a few days ( a really bad drug) and my peeing really was like your proverbial race horse! My IPSS score at that time would be 0. But it only lasted for a few days and then reverted back. So doesn't that say that my bladder muscle was still good? I could actually hit a target with my stream 6 feet away and my full sexual function returned too. To me it seemed my BPH was all inflammation but I don't know.

My uro wants my IR guy to comment on the report first but I cannot reach him. He wants to know if this type of scan is typical of PAEs.

I am still in shock. I used to write guys on this forum who were down about their BPH to go over to the prostate cancer threads and see what those guys deal with and then they wouldn't be so down. Gee whiz...  Neil

Very interesting but not sure what to make of that with the Prednisone. It does seem to suggest you may be dealing with an inflammation/prostatitis of some sort if it's not  your prostate size and not your bladder. Have you followed this line of thought with your urologist? They tend to rush to their go-to treatment a lot when presented with significant bph symptons without really thinking things through. I guess that's why these procedures work on some but not on others.

Jim

You are very perceptive as usual - when I told my previous uro he shrugged it off but then added that I would then be an even  better candidate for a turp! He didn't explain but I guess he meant that I did not have any physical obstructions other than the inflammed tissue. My second uro just looked at me with glazed eyes.

But my feeling is that my BPH is a chronic inflammation due to an auto-immune disease similar to my COPD. It may have started decades ago with acute prostatitis that wasn't treated at the time but that doesn't matter anymore. Last summer I was given prednisone for an asthma attack and that was when I noticed it cleared up all my peeing problems. This past summer I went into AUR just a month before my PAE. But rather than go to the ER I took one 50mg pill and that had me peeing like a race horse for 3 days. I used that time to travel to Detroit where I got a lesson in CIC.

Neil

Persue your theories before committing to any operation or procedure. You have CIC as a safety valve to empty your bladder and protect your symptons. Curious, how long did it take for the 50mg of Prednisone to start working?

I can't get over the "even better candidate for a TURP" guy. Ha.Ha. Priceless. I guess that's what you get when you go to a one trick pony.

Jim

 

Neil,

Following what you said, would it make sense to approach your system as a chronic nonbacterial prostatitis? Not a fan of antibiotics when unecessary, but sometimes a long course works for this. Possibly because antibiotics can have an anti-inflammatory effect in addition to its antibacterial properties. Or perhaps look at other ways to cut down the inflammation, possibly in the alternative medical arena. Not to say you should't keep working with urologists, but it sure gets tiring saying "no" all the time to whatever procedure or operation they are using

Jim

I really cannot thank you enough for all the time you have taken to help so many guys stay with their self-cathing. I only first learned about it from you last spring but never thought it would happen to me (AUR). But when it did I knew where to go for a lesson. Still with so many catheter styles your posts helped me to sort through it and get on the Speedicaths. Also I would not have stayed with it w/o your constant help to me and others. I still do not like it but the alternatives are far worse. And now I have a life-boat to help me through this new problem. So for all the dozens of guys you brought to CIC - thanks Jim.

It took about 6 hours for the prednisone to restart my peeing and about 12 hours to really kick in. It really was like the fountain of youth in every possible way but it is such a potent and dangerous steroid at that level.

Actually my old uro was a 2 trick pony - he also offered me a prostatectomy!

Chronic prostatitis is so difficult to treat because there are so many hiding spaces for the bacteria in the prostate tissue. Also those little buggers learn to cover themselves with a mucous membrane that is impermeable to most drugs. Anyway, once the auto-immune effect kicks in over time even eliminating the original source of irritation will not generally break the auto-immune/inflammation pathology.

So I try to focus on taking a lot of natural anti-inflammatories/anti-oxidants like Co Q-10 and curcumin and quercetin and vitmain C but I cannot swear by it.

Also it is curious that NSAIDs like ibuprofen have no effect on my BPH whereas steroids like prednisone clear it up.

Thanks Jim. Neil

Lot of great information, Jim.  THANK you!

Hi Rich - thanks for responding. The report said the PIRADS category  was 4 - I thought that was part of the machine description! I guess I will also have targeted biopsy but I am stuck between 2 doctors - a uro and an interventional radiologist who don't seem to like each other.

Did you ever have a TRUS core biopsy in the past that might look like lesions in an MRI?

Thanks for responding.

Neil

Hi Neil,

    Not sure what you meant by your last question. I had two regular (random) 12 core biopsies many years ago that came back negative. My PSA continued to rise, but by this time I knew about 3T MRIs. So as I mentioned, had that, and it showed one lesion with PIRADS 4/5. Then I had the targeted biopsy (along with a random biopsy at the same time), which all came back negative. If this didn't answer your question, please try again... I'll do my best!!!

Also, there was a long stretch between my MRI and the trageted biopsy. During that time, I figured I most likley had PCa, so I educated myself very thoroughly about what my options would be going forward. I read several books (3 of which were extremely helpful) was on an incredible forum, and connected with a support group in San Diego (the other side of the country from me) that has great resources. Bottom line is depending on what the biopsy might find in your case, there are numerous options going forward that your uro doc might not inform you about. So as always, due diligence.

Rich

He doesn't make as much money that way.

Neal

Thanks again Rich. By TRUS I just meant Trans Urethral Ultras Sound guided needle biopsies which is the same as you describe. I've had 3 of these over the years for a total of 36 needles. When my uro does a DRE he always comments on how he can still feel the scars so I wondered if these might show up in a 3T-MRI as "suspicious regions".

I am glad your targeted  biopsy was negative. Did you have a game plan in palce from all your research in the event of a worse-case scenario?

Thanks again for your help.

Neil

Ah, so the uro doc did not say either way about the TRUS scars showing up as a suspicious area. Interesting possibility. I don't think he would have even mentioned the BHP nodules as an expalnation for the suspicious area on the MRI except for the fact that I pressed him for an explanation.

I did have a game plan forming which I'm happy to share. Just should mention that this all happened a little over a year ago, and that some of the materials I used in research were by necessity even older. The field is changing so fast that a friend who has just arranged for PCa treatment that will start in a week or two had info about modifications to the treatment that was completely new to me, and most likely instituted in the alst 12 months.

The first thing that I had set up (even made an appointment before I had the biopsy) was a consultation with Dr. Mark Sholz, one of the co-authors of "Invasion of the Prostate Snatchers". I was extremely impressed by the book: he is a prostate oncologist, not a uro doc. The book was a very clear exposition about the dangers of the over diagnosing and over treatment of prostate cancer, and also very notable to me for the humanity and care expressed in it. So I really wanted to talk with him if the biopsy came back postive. He's in CA, but fortunately does phone consults. Not cheap, but then we are talking about an extremely important decision.

Re: if watchful waiting did not seem appropriate and treatment was advisable. I was leaning very much towards Proton Beam Therapy, and in specific  at the Loma Linda Medical Center i So California. That's a long discussion about why those might have been my choices at that time. Happy to tell you more if you are interested. My friend who will be starting treatment has opted for Proton Beam Therapy at the Mayo Clinic in Phoenix (where he lives).

Rich

 

Thanks for sharing this information Rich. I just ordered "Invasion of the Prostate Snatchers" - sounds like required reading for this forum in general.

Proton Beam Therapy sounds like something from Star Trek. I'll look that up too.

I wish my IR guy had taken the time to walk me through the MRI scans so I could better understand what is happening but he is too busy. I will hear back from him on Friday. The purpose of the MRI was to look for the effect of the PAE on the prostate arteries, like ischemia and necrosis. But none of that was reported - just the suspicious stuff.

Thanks again for sharing. Neil

Good luck tomorrow Neal - I'm pulling for you. Neil

Hi Neil,

     Make sure whatever you're looking at is "Proton" not photon. Regular radiation treatment for PCa is photon x-rays. This is a different animal entirely.

A couple of other immensely helpful books are:

Prostate Cancer Breakthroughs 2014: New Tests, New Treatments, Better Options: A Step-by-Step Guide to Cutting-Edge Diagnostic Tests and 12 Medically-Proven Treatments,    by  Dr. Jay S. Cohen

    (for Proton Beam Therapy, though a little dated)

    You Can Beat Prostate Cancer: And You Don't Need Surgery to Do It,  by Robert J Marckini

Let us know what your IR guy says.

Rich

Thanks Rich. I also ordered a free orientation CD on PBT from Loma Linda. I am taking advantage of all your hard research! ... just in case.

Take care

Neil

A man after my own heart.  

The third book I mentioned (by Bob Marckini) is about his decision process and ultimate selection of Loma Linda and PBT many years ago. He's the founder of a web support group of 7000+ men who have undergone PBT. Called "Brothers of the Balloon" (There's a balloon that is used to protect the rectum (I think) from the proton beam.)

 

This is to Neil, and the others who have been following my progress with my PAEs.

Yesterday, I had my second PAE from Dr. Isaacson at UNC.

First, some background for those of you new to the site.

I had my first PAE Dec. 2, 2015, again from Dr. Isaacson.

I decided on the PAE for several reasons.

First, in the hands of a good interventional radiologist (IR), it is the least dangerous of the prostate treatments, with almost no chance of long term side effects, with one exception. Like other prostate treatments, it is likely to cause, what looks like, "reverse ejaculation" (RE). Since the prostate shrinks from this treatment (that is how it works), less semen is produced, so it looks like you are not producing any at all, thus it appears that you have RE. Many men are needlessly concerned about RE. RE does NOT change any of your sensations. You still have a climax. It still feels as wonderful as it ever did. You still have the sensation that you are ejaculating fluid out the end of your penis. The difference is that you aren't. Unless you are looking at the end of your penis at that time ( a very difficult thing to do while it is in someone's vagina), you would never know the difference.

It is possible that a bad IR could cause you serious problems if the wrong area is embolised, but that complication is extremely rare, particularly when compared with the almost certain side effects of other prostate treatments. Dr. Isaacson said that he always checks each blood vessel before he actually embolises it. I expect that he actually puts a dye into it to see where it goes. Those of us with prostate problems have to do SOMETHING; I chose what I thought was the least troublesome and dangerous treatment.

Second, the procedure itself is the least painful treatment (see below).

Third, If it doesn't work out for you, it doesn't preclude any other prostate treatment later if you suddenly get a wild hare for one of the many flavors or colors of a TURP.

My first PAE worked for a few months, then it didn't, and recently, my urination was as bad as it had been before that PAE. It took some real soul searching to decide to do it again, particularly since I had to pay for it both times, but I decided to give it a second chance. When I discussed it with Dr. Isaacson, he said that, for most men where it doesn't work out, the problem is that the blood vessels regrow around the embolisations. He said that this time, he would do the embolisations a little bit further away from the prostate, to make it more difficult for this regrowth to occur. He also said that he would embolise more arteries this time, and particularly, he would look for any major ones that he had missed the first time. I am a coward, and I know that very little pain is involved in the PAE, so with all of the above in mind, I decided to go forward with it again.

The procedure itself went very well. The nursing staff and the operating room staff were wonderful. The checkin was handled very easily, and all in all we were very pleased with the whole process. After the PAE was completed, and I was again awake, Dr. Isaacson came to my room to discuss it. He told us that he had re embolised the arteries he had done before, further from the prostate, and had embolised several other smaller arteries. He also said that blood vessels in the abdomen are very irregular from person to person, and that I have another large blood vessel supplying my prostate that most other men don't have, and that one was probably the reason that the first PAE had not worked well. He, of course, embolised that one, and expects that I will have no further problems. We'll see, but I am very hopful. I'll let you all know how it goes.

Today, I am feeling almost normal. He again used the approach through my left wrist. I have no pain there at all, but have some minor pain in my right groin. The pain is well controlled with the medications I got from Dr. Isaacson. I expect that my prostate is somewhat swollen from the PAE, and that the pain has radiated to my groin. Before this PAE, I was urinating every hour to hour and a half, 24 7. Now, I am urinating about every three hours or so, with a much better stream.

Best of all, NO CATHETER WAS INVOLVED AT ALL!

I'll provide updates in the future. Please let me know if you have any questions. Thanks for your good wishes.

Neal

Hi Neal,

Glad things went so well! 

One question. From what I've read here one of the benefits of PAE was no retro ejaculation. Are you saying that you got retro from the PAE or are you saying you just have less ejaculate? With retro, my understanding is that the semen flow gets short circuted back into the bladder and nothing comes out. 

Jim

Good to hear that Neal. How does this early improvement in peeing compare with your previous PAE at the same point in time?

Now go get a big piece of cake at Nantucket!

Neil

Hi Neal,

   Here's hoping for long lasting relief. Thanks for the detailed post. Very helpful.

Rich

Hi Jim James,

This is confusing, so I'll try to explain it. Most men masturbate, see nothing come out of their penis, and call it RE.

Two things can cause that to occur.

In one case, a man has a TURP, of whatever color or flavor, and the valve between the bladder neck and prostate is damaged by that procedure. When he ejaculates, the semen is not blocked by the damaged valve, and flows into the bladder rather than out the end of the penis. That is true RE.

In the other case, a PAE is performed, the prostate shrinks, little or no seminal fluid is produced, so none comes out of the penis when the man ejaculates. The guy sees that and calls it RE.

The same thing happens in both cases, but with very different causes. I was talking about this case.

Neal

Hi Neil,

The improvement this time is the same as last time. Dr. Isaacson tells me that the PAE does NOT cause this early improvement, and I apologize for not clarifying that in my earlier post.

This improvement is caused by the post op meds he prescribed. They are there to mitigate the swelling of the prostate which would otherwise occur initially from the trauma of the PAE. Before you get too excited, thinking that you can use them permanently to help BPH, you need to know that they are very dangerous if taken long term. That said, they work well, and are not dangerous if taken short term. In a week or two, when the prescriptions run out, things will get about as bad as they were before the PAE for 3 or 4 months or so until the diminished blood supply to the prostate takes real effect, and the prostate shrinks. Then things should get better again.

We already went and got that wonderful piece of cake with whipped cream and strawberries.

Neal

Rich, thanks for your good wishes.

Neal

Hi Neal,

My stomach hurts just thinking of that cake. When I went to UNC for my MRI I brought back a huge piece for my wife!

I agree with you about the post-PAE meds - especially the prednisone. I too had a really good intial response to the PAE but i knew from experience that it was the meds they gave me for 14 days. Sometimes I wonder if some of these miracle reports we hear the day after the procedure is really just the meds speaking.

I had a good phone discussion with Ari on Friday about my MRI and the spectre of the dark spot. He said that the CD did not contain any of the post-contrast images from the 3T-MRI which of course is what he needs to assess my progress so he will contact the hospital to get them.

Even though the my prostate size was reduced by 35% if the numbers can be believed my IPSS score is still 30. I once asked Ari how the BPH which is located in the transitional zone could be reduced when the PAE only affects blood flow to the peripheral and middle regions. He said he did not want to embolize near the transitional zone because of fear of embolizing the urethra. So I wonder if this accounts in part for the variability in IPSS scores. I would love to see the published studies broken down according to prostate volume. They have the data but just stick to overall statistics. I've written them all and evn offered to compile the data (including Ari) but no response.

Continued good recovery and try the unbirthday cake for a real treat!

Neal