Prostate HIFU Recovery Journal

This blog entry is a journal of my battle against prostate cancer and the recovery process directly following HIFU.

July 2018 – Suspicion.

At my annual physical my PSA reading was 4.1. Just a little higher than normal, but since I take Finasteride the reality could be double that value. In 2018 the labs showed a PSA of  just 1.8. My physician Melanie Lowe of Cornerstone Primary Healthcare refereed me to Urology Associates to be evaluated.

September-October 2018 – Diagnosis.

Dr. Tissot examined me and ran additional blood-work to see if the PSA level remained elevated or returned to normal. I was on hormone replacement therapy and the Testosterone treatment I recently received may have raised the value independent of any disease.

The blood-work results that came back did not show much reduction after one month of waiting so Dr. Tissot arranged for a Prostate Biopsy. The procedure takes 12 core samples from the prostate for pathological analysis. The procedure was uncomfortable and took about 20 minutes. I was advised I may see some blood in my urine for several days.

Immediately after the procedure I had an urgent need to urinate and when I did it was all bright red blood, a large blood clot also fell into the toilet bowl. A nurse told me this was normal and I left for home. Before I reached the ground floor of the medical building I had to urinate again. this time a smaller quantity of blood and a small clot. I stopped a third time 10 minutes later on the way home, despite the urgent desire to urinate there was nothing to void. The drive home was very uncomfortable with a strong desire to urinate all the way home through rush hour traffic. I will get a driver for my next biopsy should that be necessary.

The results of the biopsy came back positive for cancer. One core sample had 0.5 mm of cancer cells. This small amount was not enough for DNA analysis. The Gleason score was 3+4 for a total of seven.

November-December 2018 – Treatment options

There are many treatment options for prostate cancer. Of the many options described to me I was offered several to consider.

• Active Observation – Essentially you do nothing under the care of the urologist. to see how slowly or quickly the cancer grows.
• Surgery to remove the prostate, considered the “Gold Standard” for prostate treatment with the highest chance of survival.
• Radiation, External beam X-ray or Radioactive Implanted Seeds. Proton beam was a third option. Radiation is considered the second best chance of survival but once done excludes surgery as a secondary option should it fail.
• HIFU Prostate Ablation – Ultrasound heats targeted prostate cells and kills them including the cancer. This was approved for prostate cancer by the FDA in 2017 and has been used in Europe for over a decade. Survival rates have yet to be established with any degree of certainty, studies so far are a mixed bag of both excellent and poor results.
• New treatment using oral medication under clinical trials at Vanderbilt University. I was likely an ideal candidate for this.

As a prostate cancer patient, you are asked to make the final treatment choice. Appointments were made for me to consult with specialists for Surgery, Radiation and HIFU. I rejected the clinical trial as an option. I visited each specialist over the next month. I found that as I came away from each specialist I was convinced that was the best option. Clearly an emotional response to each consultation.

January 2019 – Treatment Choice.

As the title of this blog indicates, I chose HIFU over surgery or radiation. Surgery and radiation are radical treatments with good survival rates but both come with the potential for lifelong complications such as ED or incontinence. With maybe 30 years left to live living with such complications for so long was a concern. HIFU effectiveness is not so certain but side effects are rare and often less severe if they do occur.

I underwent many tests to be sure cancer had not spread elsewhere. Tests such as Chest x-ray, Body Scan, CT Scan, MRI of Spine and Prostate. Interestingly the prostate MRI did not show cancer but did reveal suspicious growth in a different section of the prostate.

Based on the tests and pathology report it seems the cancer was caught early and is localized to the prostate organ. The pathology report shows a 25% chance that the cancer will have spread outside the organ but none of the tests showed cancer elsewhere.

I decided on HIFU treat the local cancer. I understand that there is a chance it may not be 100% effective or cancer is elsewhere undetected. If cancer returns I will be faced with more choices, if it doesn’t I’m in the clear. HIFU does not exclude future treatment options, so if my choice proves to be incorrect more radical treatment options are available.

The pathology report showed that there is a 25% chance cancer will have spread outside the prostate. This is relatively high in my opinion, so I was less attracted to surgery which would not address external cancers anyway. Radiation would be the most effective in catching stray cancer but you’d have to find it to treat it, and none of my imaging results showed other cancer.

The drawback with HIFU is that commercial insurance does not cover the treatment of prostate cancer unless it is a follow-up to a failed radiation treatment, other scenarios are not covered. This is my first brush with cancer and I chose to pay out of pocket. The cost is high at $25,000, but I won’t allow money to dictate my choices, I am fortunate enough to be able to afford the procedure.

Advanced Payment Required

I found it unusual that as a self pay patient I had to pay for the procedure in full, two weeks prior to treatment. Most healthcare is paid for after treatment or at the time of service. Any routine or non routine post operative treatment is included at no extra cost for up to 90 days as long as it a result of the procedure. A 90 day warranty I suppose.

February 26th 2019 – Preparation

For 24 Hours prior to treatment I was put on a clear liquid diet which is very restrictive. The only item that I was able to “eat” was hard candy. Fluids allowed are water, apple, cranberry and Cranapple juices as well as some clear sodas such as 7-Up and Sprite. Broth and Bullion are allowed also. The first hour on this diet was when I was the hungriest. The following day I almost didn’t notice my hunger anymore. I found myself drinking a lot on this diet and visited the restroom frequently at work.

February 27th 2019 – Treatment

I arrived at the Surgery Center at 8:30 am in preparation for a 10 am procedure. I was greeted on entry and paperwork was processed quickly. I was called back within 10 minutes of arriving and the staff had me prepared for the OR 30 minutes early. My blood pressure was 133/84, which the staff commented was low compared to many patients immediately before an operation. For me its the fear of the unknown that is worse. Dr Hassan had just finished the previous HIFU patient and began my procedure 30 minutes ahead of schedule. The procedure took about 2 hours and I was under general anesthesia the whole time. The staff shared with me that despite there being two HIFU treatments on the same day, it had been 40 days since they last had one. I was pleased that I was second so Dr Hassan could practice on the guy in front of me.

I awoke with a urinary catheter which I will retain for 6 days. This is standard procedure, the prostate swells after being heated and the urethra would most likely become restricted or blocked. The prostate will also slough off dead tissue fragments which could also block the urethra. The swelling should be resolved within 5-7 days based on the treatment I received. Dr Hassan treated the one side of the prostate with cancer only. Due to the chance of debris being passed into the urethra a relatively large catheter diameter is used, the size used was 16fr. Having never ad a catheter before I was glad this was inserted while I was unconscious.  16fr is the smallest catheter size recommended when tissue debris is anticipated.

There is almost no pain from the prostate treatment. The initial symptoms that were most troubling were due to the catheter. I had a strong urge to urinate I could not relieve. I took Percocet which was prescribed for me. The Percocet made me feel quite nauseous and I decided to not take it anymore. I only got four hours of sleep. The discomfort from wanting to urinate kept me awake until 1 am when the urge finally subsided and I could rest.

I hung the urine drainage bag from the bed frame to keep it below my bladder and above the floor.

February 28th – Recovery Day 2

My back was aching at 5:30 am. I had slept without much movement. I decided to get up. I was relieved to find out the urgency to urinate was gone and the catheter was only a minor annoyance. By mid-day I felt great and kept drinking plenty of water.

I started noticing minor leakage of urine around the catheter when coughing. I was coughing more than normal, I was alerted to the fact I wold have a sore throat from the operation and I did. For some reason liquids or even just saliva would go the wrong way very easily.

By evening I started to notice a discomfort in my right side and my belly was very tight. Seems like constipation, so I took a few stool softeners before bed.

Before going to bed I route the drainage tube to right of my body. I sleep on the right side of the bed. It is important to secure the drainage tube to take strain off the catheter itself.

March 1st – Recovery Day 3

I slept so much better and my back wasn’t sore either. I routed the drainage tube differently which gave extra slack so I could move in bed without as much restriction.

The stool softeners had a minimal effect and I did manage a tiny bowel movement. I took more stool softeners. This did the trick and later in the day I had easy bowel movements. There was a small show of blood from my penis when having the bowel movement, but not enough to be concerned.

During the day I route the drainage tube to the left of my body which suits where I sit in front of the TV. You can see I have lowered the position of the tube to make it more comfortable and drain more easily.

Urology Associates checked in with me in the morning. I shared that some urine bypassed the catheter when emptying the urine bag (the sound of running water increases the urge to pee) or when coughing. The nurse thought that I was experiencing bladder spasms and would need medication to control them. Later in the day a prescription notice was issued on Urology Associates patient portal. I looked up the drug prescribed and it was not recommended for Glaucoma patients. It was too late to call back to see if there is an alternative. I chose to continue without the medication, my eyesight is important to me.

In order to reduce the chance of a urinary tract infection I am being mindful to drink plenty of water, and some cranberry juice as well. In addition I am sure to clean the discharge port on the collection bag with an alcohol wipe each time I empty it, the last thing I need is an active colony of bacteria in the bag. I also clean the catheter with alcohol wipes after each bowel movement, it’s inevitable bacteria will splash up onto the catheter which is just above the toilet bowl.

March 2nd – Recovery Day 4

I awoke at 1 am on my left side, I had changed position in my sleep. I realized that the drainage tube had come loose and the weight of the drainage tube was being taken solely by the catheter. I was surprised this didn’t hurt. I got up and corrected the issue. I hope the extra pulling of the balloon in my bladder did not injure my sphincter or bladder. Without any pain or symptoms I am hopeful it isn’t an issue. The whole point of choosing HIFU is to reduce chances of incontinence and other side effects such as E.D.

I am without any pain or discomfort today. The biggest pain is being tied to the drainage bag and tubing which restricts your activities. My cough is almost totally gone and I no longer have a sore throat.

It is possible to shower with the catheter inserted. I hang the drainage bag on the organizer in the shower and shower carefully. I used dove soap to clean my skin and the catheter. It’s important to hold the catheter close to where it enters the penis while you clean the catheter so that it does not tug. I was pleased when cleaning the catheter that my penis grew, so Erectile Dysfunction is not present after the surgery.

March 3rd – Recovery Day 6

Slept well and feeling much stronger today. Being tied to the drainage bag is the primary problem. Each bowel movement is accompanied with a small show of blood that seeps past the catheter. It seems that there is more blood not less today.

March 4th – Recovery Day 7

Sleep was a little broken. Small show of fresh blood getting up out of bed, I’ll have to remember to mention to the doctor that I continue to see blood and get a idea if this is expected at this stage and when it will resolve.

Today is the day the catheter is due to be removed, I’ll have to travel in rush hour traffic for over an hour to get there. I hope the small leg bag is sufficient for the journey. The leg bag may not be lower than my bladder when sitting down in the car, hope it works well enough.

The journey through rush hour traffic was a little uncomfortable, sitting for long periods with the catheter in is uncomfortable. The bag seemed to fill up just fine. My systolic blood pressure was 161 when I was taken back to the examination room, clearly I was anxious about the experience. The nurse who removed the catheter was very down to earth and favored the “rip the band aid off” approach. I agreed given her experience and confidence and it wasn’t painful at all and was over in a jiffy. What a huge relief.

I was advised by the Physician Assistant to drink plenty, at least 2 liters in the morning, avoid becoming constipated and remain active, go for a walk. I asked about the increased blood in the last 24 hours and he said that this isn’t unusual with a catheter. No straining and no sex for 3 weeks. Watch out for a fever or inability to urinate. I made an appointment to return mid April for a follow-up and the first PSA blood test.

Upon getting home I urinated for the first time. It wasn’t as painful as I had expected, a small amount of blood and small clot was all I noticed. The stream was diminished by about half and was more difficult to maintain requiring several attempts before I was comfortable again.

I started taking stool softeners three times a day to be sure I don’t get constipated.

March 5th – Recovery Day 8

I woke up frequently to urinate, I will need to retrain my bladder on how to be full again. At 4 am I woke up and realized that the heels on both my feet were numb and tingly which didn’t go away with walking. I looked up a possible cause, with Prostate Cancer (and other cancers) its possible for extremities to go numb due to pressure on nerves. With prostate cancer pressure on the spinal column causes numbness in feet. I assume the swelling due to the HIFU is responsible. I will call the doctor to see if there is something that can be done and how serious this is. By 7am the problem has self resolved.

Doctor didn’t have anything specific on the numbness and tingling, he said if it got worse or wouldn’t go away to let him know and he’d involve another doctor.

March 6th – Recovery Day 9

First day back at work. Thankfully I have a sit-stand desk and stood most of the day. I have found sitting tends to be uncomfortable and creates additional blood in urine. I just sat for meetings. I only had to leave a meeting early to go urinate, urgency is beginning to return to normal. I continue to see small amounts of red tissue in my urine as the Prostate sloughs off dead cells.

After lunch I went by CVS and got stool softeners to keep at work and also some gummie fiber chews. I intend to wean myself off the stool softeners and replace them with the fiber supplement.

I was glad to go home at 4 today, I was beginning to get tired and did nod off in one afternoon meeting. I did fine on the commute home, due to a wreck on I-65 traffic was way worse that normal, but I did fine for 1 1/2 hours of driving. I just sipped at water so as not to fill my bladder too early in the drive.

March 7th – Recovery Day 10

I am feeling much stronger today and am getting around normally. Quite a bit of blood in my urine this morning as well as blood on the inside of my thigh that must have leaked during the night. I find starting and maintaining a urine stream during the night or first thing in the morning is difficult and the stream is weak. Later in the day it gets much better with a almost normal urine stream

Once I got to work I was pleased that there was no more blood showing in my urine all morning. Still getting red tissue occasionally, I’ve read thins can continue for up to 8 weeks, I’m hopeful the cancer cells are being sloughed off and out of my system.

Bowel movements are easy so I skipped the lunchtime stool softener and will take just two a day as the fiber begins to help. I got some real cranberry juice at Whole Foods, with absolutely no sugar, it is very sharp, which is my preference anyway.

I went all day long without any blood din my urine. AFter sitting at home for 30 minutes blood was in my urine again. Standing most of the day at work certainly helped.

March 9th – Recovery Day 12

There is gradual improvement each day with less blood in my urine during the daytime. I have found that there is bleeding from my penis overnight which bloodies the sheets.

Today was the first day that I did pass blood in my urine as I had a bowel movement. Small pieces of light red tissue continue to be present in my urine, about once every other urination. Most times these pieces of tissue pass with no sensation, the occasional large piece can be felt being passed through the urethra.

March 13th – Recovery Day 16

Bleeding at night seems to occur in the first 3-4 hours of sleep. Once I am up and about I do not see anymore blood in my urine, just over night. A small blood clot does form in my penis overnight, and when I urinate releasing the pressure from my bladder into my penis causes my penis to swell until the pressure is sufficient to clear the clot. I typically get up around 1 or 2 am with a strong urge to urinate. I am drinking more than I used to. I no longer notice more frequent urination during the day at work or around the house.

Every urination has one or more pieces of red tissue, the prostate is sloughing off dead pieces more quickly now. I notice more large pieces I can feel.

March 15th – Recovery Day 18

The overnight bleeding is almost over. A small show of blood on my inner thigh and very little blood in my urine when I got up for the first time. Last night was the first night I slept all the way through the night without having to get up. Dozens of pieces of tissue come out each time I urinate now. Gravity makes them accumulate near the tip of my penis, they are the first thing to be voided as a start the urine stream. I feel normal and that the recovery period is coming to an end.

March 16th – Recovery Day 19

Overnight bleeding has stopped. Thanks to the great weather I went for a walk today. After an hour of walking I noticed blood in my urine again, maybe I overdid the walking. Later in the day I notice that there is blood in my urine each time I urinate. It seems the walking has increased frequency. I also notice a prickly feeling in my penis which seems to occur when blood has accumulated near the tip of my penis.

March 20th – Recovery Day 23

I continue to have blood in my urine, I had hoped resting would return things to what they were. I called the Doctors office to check if this is something to be concerned about or not. The nurse indicated bleeding may increase and decrease dependent upon exertion, which correlates to my long walk. I’m reassured this is nothing to be concerned with without other symptoms. The advice is to drink more water to avoid getting dehydrated which should assist with further healing. There is no evidence of tissue in my urine anymore, it seems the prostate has finished sloughing off tissue.

March 25th – Recovery Day 28

The blood in urine has continued and I spoke with a RN at HIFU Prostate Services fora second opinion. She felt the blood in urine sounded normal, she asked several questions such as was I experiencing bruising or swelling of the penis which I am not. She wondered if the prickly feeling and sensitivity in my penis might be due to shrinkage of the prostate and changes to the position of nerves. I did have numbness in my heels/feet earlier during my recovery which the doctor felt was nerve related as well.

March 27th – Recovery Day 30

Today I passed urine without visible blood on two occasions. I thought maybe the problem had self resolved, but blood reappeared later that day. At least this maybe a sign that recovery is getting closer to being resolved.

April 1st – Recovery Day 35

I was able to sleep for about 5 hours before waking to urinate. There was visible blood in the urine. Previously I’d wake with dried blood on my inner thigh or on the head of my penis. Dried blood on my skin no longer occurs overnight which indicates to me the volume of blood is now quite small. One more urination today without visible blood. Small progress, but progress nonetheless.

I notice now that sitting does not get uncomfortable anymore after 30 minutes or so, the tenderness in my perineum is no longer giving me trouble.

April 17th – Recovery Day 51

I haven’t noticed any blood in my urine for over 10 days now. Frequency of urination has returned to what I was used to prior to the procedure. The urine stream is strong, it is like the clock has turned back 20 years, if noting else the BPH is cured.

I see very little blood in ejaculate. Orgasm is short and only one contraction, not several in a row. I have read that orgasms would feel different, but I wasn’t expecting them to be quite so anticlimactic. This is a bigger side effect than I was anticipating. The sensations building up to orgasm are identical and the erection is normal, the big change is the reduced potency of the orgasms. I experience no pain during orgasm as indicated by some web pages, just wish they lasted longer.

I went for my follow-up with my urologist. A blood sample was taken and he called the next day with the results. PSA is now 1.2, down from 4.1 which is quite a drop. The lowest I had seen several years previously was 1.8. How much this attributable to the HIFU procedure and how much is due to being off Testosterone for almost 9 months is not known. My urologist will see me again in 3 months, he said there is a chance the PSA level may go down further.

A PSA of 4.1 is only just outside of normal range, however I have been on Finasteride for many years and Finasteride reduces PSA values by as much as 50%, so the “true” value may have been as much as 8 and the current lower value close to 2. My urologist said that it maybe possible to come off Finasteride in the future. One less pill to take each day. But until we see the minimum PSA value occur I doubt he will recommend a change just yet. Finasteride helps with hair-loss and according to some medical websites reduces cancer chances, so I may choose not to discontinue.

April 21st – Recovery Day 55

I went on a 2 hour walk today with no untoward symptoms. So I believe my recovery is about complete. Last year I signed up for the Music City 1/2 Marathon. Without the training building up to the race it doesn’t make sense competing this year. Hopefully next year will be fine.