HIFU:  Navigating the Wild, Wild West of Urology and Prostate Cancer

In The Beginning…  

I had never given two thoughts about my prostate until I hit my sixties.  Right as I turned 60, my primary care physician recommended I go see a urologist because of an elevated result on a prostate-specific antigen (PSA) test.   He recommended a urologist in San Antonio, so I made an appointment and went to see the guy.  I was not impressed.  He immediately said I should get a biopsy.  I asked him if the biopsy would identify the cancer as aggressive or slow growing, since I had read that about 75% of prostate cancers in men grow so slowly that they basically pose no threat of metastasis.  He said that they were not able to accurately predict whether a cancer was aggressive or not.  So I decided I would forego the biopsy.  A few years later I began to experience the classic signs of benign prostatic hyperplasia (BPH), commonly known as enlarged prostate.  As the frequent urination and getting up several times in the middle of the night to urinate gradually got worse, I began trying over the counter remedies, none of which worked, as far as I could tell.  I was beginning to feel tired because of the sleep interuption, and I was starting to worry that on my trips I would constantly be having to urinate and disrupt my travel.  So a little over 2 years ago, I heard about a procedure called Urolift.  I began to investigate this procedure and in the process, ran across another procedure called Butterfly.  I  sent an email inquiry to the company that makes the butterfly device, and, a few days later, the CEO of the company called me.  He said that the device was developed in Israel, and that it had been used there successfully for several years.  He also said he felt the design of the device was superior to the Urolift system, and that it was currently being tested here in the states.  He asked where I lived, then suggested that I contact Dr. Brian Mazarella of Urology Austin, who was in the process of doing clinical trials for the Butterfly device.  I called and made an appointment with Dr.  Mazarella and in no time I was sitting in his office discussing the Butterfly procedure with him.  He said before I could be included in the trial, we would have to rule out cancer as the cause of my BPH.  Since there was, to my knowledge, no history of prostate cancer in my family, I was confident that I would qualify for the clinical trial being conducted by Dr. Mazarella.  So we scheduled a fusion biopsy of my prostate for September 20, 2022.  When Dr. Mazzarella’s office called me a few days later and said he wanted to see me right away, I was afraid it was going to be bad news.  It was…I had prostate cancer.  After explaining that the cancer was very small and the lowest grade, Dr. Mazzarella suggested that we send some of the tissue to a company in California (Decipher Prostate) for genomic testing, since recent advances in the field of genetics made it possible to predict (with about 75% accuracy) whether a prostate cancer was of the aggressive type.  So that is what we did, and, based on the genetic testing, Dr. Mazzarella recommended that we treat my cancer with “active surveillance“, as opposed to radiation or surgery.  He recommended that I see Dr. Robert Dickinson, one of his associates, who was well versed in the application of active surveillance.  So I began seeing Dr. Dickinson.  He put me on a drug called Flo-Max, and it provided me with some measurable relief from my BPH symptoms.  He said we would monitor my PSA and do more biopsies on a periodic basis, about every 18 months.

Storm Couds Begin To  Gather…

I was beginning to think this prostate cancer business was really not that big of a deal.  I  took a birding trip to Costa Rica and a wildlife photography trip to Brazil, and didn’t experience a single problem with my BPH.  During the Brazil trip I spent a week going out daily for up to five hours at a time on a small boat that did not have a bathroom–  I never once had to urinate while on the boat.  I was feeling pretty good about myself!  All that changed in September of 2023.

After attending a birthday party for my 3 year old grandson, I experienced a very painful episode of acute urinary retention (AUR).  When I say painful, I mean pain with a capital “P”.  I ended up going to the emergency room where they inserted a foley catheter.  I had to wear the catheter for a week, including the day that we had a memorial service for my mother-in-law.  Not fun, to say the least.  A week later I went to Dr. Dickinson’s office and they removed the catheter and gave me a voiding trial, which I passed.  I was fine the rest of the day, but that evening I realized I had not urinated for quite some time.  Around midnight I started to get worried.  Around two a.m. the next morning I was getting desperate so, with Dorothy’s help I did a self catherterization (using a catheter my brother had given me at Betty’s memorial service).  It didn’t work.  I ended up driving myself to the emergency room in New Braunfels, where they inserted another foley catheter.  This time I had to wear it for a month!  And, to make matters worse, about a week into it, I had another AUR episode.  This time I went back to the doctor’s office and they found that the catheter had stopped up and that I had developed a bad infection in my bladder.  Three episodes of AUR had a serious effect on my psyche, and for quite a while I was almost paranoid every time I went to take a pee.  But, in the back of my mind, I couldn’t help but thinking these episodes of AUR were somehow related to my cancer, and that something sinister was going on in my prostate.  

A Turn For The Worse…

At some point Lucy Bush (Dr. Dickinson’s PA), suggested that I might want to move up the date for my second fusion biopsy.  My PSA  had spiked up to 16.3, despite having been taking a new drug (finasteride) since my battles with AUR.  So I scheduled the biopsy for January 29, 2024, after I returned from a little trip I took to California.  The biopsy went fine, and fully expected it to show that my cancer had not grown very much and was holding on to a benign prognosis.  I was dead wrong.  On February 7, 2024, I met with Dr. Dickinson, and got the bad news.  My cancer had tripled in size, raising my Gleason score from 6 to 7 and a reclassification of the cancer from low grade to intermediate grade. 

I was shocked when Dr. Dickson delivered the bad news, and, quite frankly, was kind of in a a daze.  He talked about my alternatives, and recommended that I consider radiation.  Before I left his office that day, they had made be an appointment with Dr. Garza, a radiation oncologist.  According to Dr. Dickinson, Dr. Garza was one of the very best.  My appointment was scheduled for March 15, 2024. 

A Ray of Hope…

The thought of four to six weeks of daily radiation treatments was not a pleasant one.  First, the drive on IH 35 (at least an hour and a half each way) to the radiation treatment facility was not something I was sure I could handle.  Second, radiation is often accompanied by side effects (incontinance and impotency) and damage to nearby tissue.   Once my mind cleared up a bit, I began to think about other alternative treatments.  The first one that came to mind was High Intensity Focused Ultrasound (HIFU).  While at a Christmas party in 2022, and old friend, Scott Martin, pulled me aside.  He told me that about ten years ago he had been diagnosed with prostate cancer and eventually flew to Mexico for HIFU treatment.  He said that his cancer was completely gone and that he suffered no side effects.  He also said that the reason he had to go to Mexico for treatment was that the FDA had not approved the HIFU procedure.   I began to research the HIFU treatment and soon discovered that it had been approved by the FDA in 2015 and was now in use in the states.  I also discovered that Dr. Eric Giesler of Austin Urology was an expert in the HIFU procedure.  So as quickly as I could I arranged a consultation with Dr. Giesler!

I met with Dr. Gisler on March 5, 2024.   I liked and trusted him almost immediately.  He said that I might be a candidate for HIFU, but he needed to do an ultrasound to make sure there was no calcification in my prostate and to make sure it was not too large for him to reach the cancer with his equipment.  He did the ultrasound, and, thank goodness, he found no problems with size or calcification.  My procedure was scheduled for Monday April 1, 2024, at St.  David’s Surgical Hospital in north Austin.  Dr. Giesler also delivered another bit of good news–  the procedure is now covered by medicare.  I had been preparing for the possibility that HIFU might cause me in excess of $25,000 out of my own pocket, so I was relieved by that news.  So, as I write these words, I am raring to go.  I will provide an update after I have the procedure–  wish me luck!

I Get HIFUed!

Before I left Dr. Giesler’s office that day, I was told that his scheduler would give me a call to set up the definite time and location for the HIFU procedure.  A few days later the scheduler called and I was advised that the procedure would be at 1:00 p.m. on Monday, April 1, 2024 at St. David’s Surgical Hospital.  I was told to arrive at 11 a.m. that day so they could get me ready for the 1 o’clock operation.  The scheduler also emailed me a detailed list of things I needed to do prior to surgery, including: taking two dulcolax at 5 p.m. the day before; administering two Fleet enemas, one the night before and one the morning of the procedure; bathing with anti-bacterial soap the night before and morning of; clear liquid diet the day before the procedure; and NOTHING to eat or drink the morning of the procedure.  The more I thought about it, I came to the conclusion that it would be best if we drove to Austin Sunday night and stayed at a motel near the hospital so we could get up at a resonable time on Monday morning and not have to fight the IH-35 traffic.  I also decided we should spend Monday evening at the motel, once again to avoid the horrendous rush hour traffic.  So, after our Easter visit with J.D. and Liz, we headed to Austin and checked into our motel. 

I woke up about 3:00 a.m. and couldn’t go back to sleep, so I got dressed and headed out for a walk.  I ended up walking to the hospital and got the lay of the land there, including walking the stairs up to the roof of the parking garage. 

By the time I walked back to the motel it was about 5:30 a.m.  I had plenty of time before Dorothy would be up so I used one of the computers in the lobby to catch up on my emails and my Facebook groups.  Since I couldn’t eat or drink anything, there really wasn’t anything for me to do other than do my second enema (around 7 a.m.) and take my final anti-biotic shower — I was ready but we were still way ahead of schedule to be there at 11 a.m.  Shortly after Dorothy finished her breakfast she got a call from the hospital on her cell and was told that Dr. Giesler was running ahead of schedule and would like us to come in early.  So be headed over to St. David’s for the beginning of my HIFU adventure. 

After completing and signing my admission papers, Dorothy and I were escorted to the surgery area on the second floor.  I met my nurse, disrobed, then was set up on an IV.  I was ready to go.  The anesthesiologist stopped in and introduced himself, and offerred to answer any questions I had.  In short order Dr. Geisler came in to check on me.  Right before we left for the operating room, he put his hand on my shoulder, looked me right in the eyes and while giving me a reassuring pat/hug said, “Don’t worry Tom, I am going to take good care of you in there”.  I really like this guy!  Next thing I knew I was kissing Dorothy goodbye and being wheeled into the operating room.

The next thing I remember was being back at the motel after the surgery, outfitted with a high-tech foley catheter.  Apparently I woke up in recovery and was semi-conscious, because I found this video I made for J.D. on my phone:

Back at the hotel, I gradually regained my senses and realized I was starving.  I was hoping for a big juicy steak and a baked potato.  Instead, because I was very nauseous from the anesthesia, I made do with a half cup of chicken noodle soup.  Once fully awake I  realized that my week with the catheter was going to be a challenge.  The one they put in was quite bulky and large and it would be virtually impossible for me to go out in public.  We left the motel about 10 a.m. that morning and headed to Walmart pharmacy in New Braunfels, where Dorothy went in and picked up my post-operation medications:  a steroid dose pack, strong antibiotic to be taken twice a day, a pain medication and an anti-spasm medication for my bladder.  It turned out I didn’t need the pain or anti-spasm medicine, but it was reassuring to have them on hand. 

I am writing this section of blog on the evening of Saturday, April 6, 2024, six days after my HIFU procedure.  I have had virtually no pain, other than the discomfort of the catheter.  I am a little stir crazy, since I have only been outside of our home a few times and have not left our property.  I look forward to seeing Dr. Giesler on Monday morning at 10 a.m. and am hopeful that I will pass my voiding trial and will have the catheter removed.  I will pen an update after seeing the doctor and let you know what he says.  A  little sidenote —  Monday is the much ballywhoed Total Solar Eclipse and Austin is in the edge of the totality zone.  The traffic is supposed to be horrific.  My plan is to leave the lake at 6:00 a.m. to try to beat some of the eclipse traffic.  We shall see!

An Update…

I arrived at Dr. Giesler’s office before it opened on the morning of Monday, April 8, 2024.  Although my appointment wasn’t until 10:00 a.m., his staff took me back right away.  A nurse removed my catheter, and performed a voiding trial.  Although she said I passed, I noted that the amount I voided was not nearly as large of a volume of urine that I passed on previous voiding trials.  A short time later, Dr. Giesler came in and told me he was pleased with how the procedure went, and that he was confident that he destroyed all of the cancerous tissue in my prostate.  He cautioned that about 1 in 20 HIFU patients suffer complications during recovery from the process, and suggested that instead of heading home I go to a nearby restuarant, have breakfast and drink several glasses of water and/or coffee, to make sure I could urinate on my own.  So that is what I did.  Much to my chagrin, after a leisurely breakfast, two larges glasses of water and two cups of coffee, I headed to the bathroom, confident I would be able to urinate and head home.  It was not to be.  I could not urinate, not even a drop.

I returned to Dr. Giesler’s office and this time was seen by his assistant Brian.  Brian explained that I had two options.  Option one was to fit me with another foley catheter.  He said that if I chose that option, I might have to wear it as long as a month.  Option two was self catheterization.  Brian explained that if I chose this option, they would show me how to use a self catheter and I would use it as needed at home, until I was able to urinate on my own.  I asked him which option he recommended and he said that if I could do it, self catheterization would be the best and most effective option.  So I chose self catheterization.  He left and soon a nurse came in and directed me as I used a self catheter for the first time.  While unpleasant, and almost surreal, the catheterization resulted in my bladder being drained, which was a relief.  She gave me five self catheters, and I headed home, oblivious to what the next several weeks would hold for this old man.   

Thank God For My Brother…

I want to interrupt my narrative of self cather hell to thank my younger brother, Ray McCoppin, who resides in Coldspring, Texas.  Ray and his wife Angie had traveled to New Braunfels on September 16, 2023, to attend my mother-in-law’s memorial service.  During the reception, he discreetly took me to his car, where he gave me two boxes of Hollister self catheters.  Apparently I had told him about my episode of Acute Urinary Retention just a few days prior.  Ray explained that he had “navigated the Wild Wild West of Urology” (yes, that is where I stole the title of this blog from!) earlier that year and he had plenty of catheters left over.  I thank God for Ray’s generosity and for his willingness to coach me by phone through the next few weeks of self catheter hell.  Ray had experienced the almost identical situation, and without his insight and recommendations, I don’t know if I would have made it through to the other side. Truth be told, he was more helpful than my doctors and nurses, and was able to explain a lot of things to me in a way that I could understand.  I couldn’t have made it without your help Ray, and will be eternally grateful for your help!

Into Catheter Hell…

Back to April 8, 2024.  I arrived home around 1:00 p.m. and was starting to feel like I needed to pee.  I took a hot shower, trying to relax and hopefully pee.  I could not.  I tried to self cath, without success, finding the cath port plugged with clotted blood when I pulled it out.  I tried again, with same result, and was beginning to get frantic.  I called the Urology Austin main number and told them I needed to talk to a nurse or a PA in Dr. Giesler’s office.  They put me on hold and said they couldn’t get through to anyone at Dr. Giesler’s office.  I explained to her my dire situation and INSISTED that I TALK TO SOMEONE to help me.  She again put me on hold, and finally a PA named Jackie from the St. David’s office came on the line.  I explained to her my situation and she walked me through a third try.  About the only thing different she suggested was to manipulate the cath back and forth once into the bladder.  I finally drained 400 ml of urine that contained a lot of blood and congealed blood.  By this time it was about 2:30 p.m. I cathed 3 more times that day (4:00 p.m.; 5:30 p.m.; and 7:00 p.m.) each time discharging 400 ml of bloody urine.  Thus I began a nighmarish cycle of self cathing, which left me exhausted and discouraged.  The next day (Tuesday, April 9, 2024) I cathed a total  of 8 times.  When I tryed to pee on my own the most I managed was a very small drizzle, while my pain increased until I finally couldn’t stand it anymore and would cath.  Brian called me that morning and prescribed me a dose pack, explaining that it might help reduce the swelling, pain, and inability to urinate.  I repeated this maddening process for two plus weeks.  Sometimes my urine would be clearer and not so bloody, but then it would be very bloody, with clots.  No ryhme  or reason to it all.  I did my last self cath on Monday April 22, 2024 early in the morning, having done anywhere from 8 to 12 caths on each of the prior days.  It was a tremendous relief to finally begin to pee again!  However, urination was quite painful, as I continued to pass dead tissue, cells, and blood.  Throughout the remainder of April and all of May, my urination was painful, and I was still passing material in my urine.  I also was having typical BPH symtoms —  frequent urination, having to get up many times each night, leakage, and inability to control my starts and stops with any certainty.  I took to wearing depends, as I often leaked bloody urine throughout each of these days.  I FINALLY began to make marked improvement on June 12, 2024.  As I write this post on June 28, 2024, I am starting to think I may actually recover and be able to have a somewhat normal life again!

A few things I wanted to mention about this process and period of time.  Ray was an invaluable source of information and encouragement, as was my wife Dorothy.  I was extremely disappointed in Urology of Austin.  First, they did not prepare me in the slightest for what I endured.  It would have been so much easier if I had had some idea of what to expect, and what was normal and what was not.  My biggest disappointment with Urology of Austin was in the area of making sure I had enough cathers to last me.  As soon as I realized I would go through the catheters Ray gave me, I called Hollister to find out what information my doctor would need to provide to fill a prescription order.  They referred me to their retail outlet (based in Houston) but were kind enough to ship me 30 samples overnight.  I called the retail outlet and they checked out my insurance and gave me all the information I would need to give my doctor so he could write a prescription and send it to them.  I went on the Urology of Austin patient portal and wrote a very detailed message requesting that they send in a prescription for me.  The next day I talked to one of the nurses and she assured me the prescription had been sent in.  A few days later I called the retailer and they said they had not yet received the prescription from my doctor.  They too were kind enough to ship me a box of 30 samples at no charge.  Bottom line, Urology of Austin never sent in my prescription.  In fact, several days after I had begun to urinate on my own, I got a call from a young lady at Urology of Austin.  She said she was with the “catheter department” and that they had just received my prescription from my doctor.  All I could do was laugh.  She eventually explained that when I was taught to self cath in my doctor’s office, someone should have given me information about the “cath department” and instructions to call them to make sure my catheter needs were met.  Of course, no one said a word to me, which resulted in a tremendous amount of anxiety and stress.  So, while I really liked and respected Dr. Giesler and his staff as individuals, my experience was that they did not communicate well or work together as a coherent team.  

So here I sit, still slowly improving.  I am starting to get better sleep at night.  I am starting to get my energy back.  While I occasionally still feel like I am passing tissue or cells in my urine, I have gone over a week without any blood or bloot clots in my urine.  I am starting to feel that I might just make it through this ordeal.  Wish me luck!

An Update…

Toward the end of June, 2024, I began to see the light at the end of the tunnel.  I was slowly starting to return to normal prostate function, and was getting my strength back.  This improvement continued to the point that I was able to take a hiking trip in late September, 2024, and a birding trip to Belize in November, 2024.   My first PSA post HIFU was 2.13.  In August 2024 it was 3.5 and in November it was 3.2.  During my last telemed visit with Urology Austin, the said that as long as my PSA reading did not reach 5, and as long as my BPH symptoms remained good, there was no need to do another MRI or biopsy.  I am very grateful for that, and, as I sit here the day before Thanksgiving 2024, I am cautiously optimistic!