Living with Prostate Cancer

On Nov. 13th, 2008 I was told I had prostate cancer Gleason 3 3=6, PSA of 8.5. I had no symptoms.

A friend told me about HIFU (high intensity focused ultrasound); HIFU has been in use for prostate cancer for 16 years in Europe with a 94% success rate, if cancer is outside the gland then you may fall into the 6%. I had already read, at the NCI site, under the list of possible treatments that “ultra sound” was a treatment option, but when I clicked on it the info was just regarding clinical trials. However, one of the trials was in Denver, and we live close by, so my wife called and sweet talked her way into getting me an appointment the next day.

We showed up first thing in the morning at my appointment in Denver, and the technician took me in to measure my gland using ultrasound, meanwhile my wife talked to a doctor in the lobby about HIFU and was totally convinced this was the best remedy for me.

But then, the doctor said my gland was too large to qualify for the trials, it couldn’t be over 25cc in size and mine was 29cc. The trials were using the Ablatherm machine, which is made in France, it has a pre-set size limit, as the doctor sets the machine on the gland and it zaps the gland, some of my gland would fall outside the scope. Plus, my gland was 3 centimeters high, the Ablatherm can only get a gland 2.5 high. You can have HIFU again, to get the excess in case it has cancer–but who wants to?? I’ve read there’s a 40% redo rate in Europe with the Ablatherm, just for this reason.

However, there is another HIFU machine, named the Sonablate 500(made in the USA), and this one can be adjusted throughout the treatment using a computer screen so that all of the gland can be ablated. The doctor can see real time what he is doing, so it’s easy to stay away from the nerves and ablate the whole thing.

With the European 16 year data, HIFU has been approved in Japan, Mexico, Canada, Australia, etc.–virtually every other developed country on earth for 5 years, and so American doctors have been flying outside the USA to preform HIFU on men.

It would cost $25,000 but I would have little threat of incontinence and ED, there were other risks listed but I reminded myself that in our litigious world one must be very cautious and list every single vague possibility.

My wife spent endless hours on the internet, she wrote to one of the people at a forum and he wrote back telling us that he is still all clear after 7 years and very happy he had HIFU. He has sent 5 other men in for HIFU and they all report excellent results. That was it, we settled on “international HIFU”, and when we called and spoke to the HIFU people in Hilton Head, S. Carolina we knew we had made the right decision. My doctor is virtually the most experienced HIFU doctor outside Europe, 400 treatments, plus he is the doctor who teaches doctors outside Europe the HIFU technique. I had to mail him all my data; the picture from the ultrasound, my biopsy and PSA score.

Plus, I had to get pre-op clearance from my general doctor and fax that in, then I was booked for Dec. 19th, 2008 in Mexico. I paid the $25,000 to International HIFU before we went using Visa, I was nervous about web scams, so I had a bit of reluctance, but if this was a scam — it was quite elaborate!

We flew down to Puerto Vallarta — a lovely place, great hotels. 5PM the night prior to treatment, we met the doctor and his nurse, at the San Javier Hospital. They were devoted to their craft, funny and thorough, it was a great meeting, we were relaxed. The doctor also brings a certified Sonablate500 technician (to monitor the machine), and a anesthesiologist. They explained everything, my only real concern was the catheter I’d be getting, but I’d be getting this with surgery as well.

My doctor has used the Ablatherm machine, but he prefers the Sonablate, as he can be sure that he zaps every piece of the prostate, and if any cancer is outside the gland — that he can see through the ultrasound picture — he can also zap it. Plus, he can easily avoid the nerves. He’s been doing this for 5 years, he also teaches HIFU to doctors around the world. I always knew I was in good hands, but I felt even better now, having met him and his team. We were given pages of information, also my doctor’s email address, home phone number, the nurse’s phone number and email as well, instructed to phone anytime day or night, plus I needed to call the day after treatment, then email every three days for a month, then once a month.

There were two other men at the meeting who were being treated this weekend, one had already had a TURP (Trans Urethral Resection Procedure) a month or so ago, because his prostate was so large, plus he had been on hormones to reduce the gland size. I didn’t need a TURP, thank goodness.

The following morning I awoke at 5AM, inserted a Fleet enema let it work, then another. At 7:30AM we went to the hospital, I was put in a private room, where I put my anti-embolic stockings on (be sure to order these at your local drug store a couple weeks before you need to leave as sometimes they can take a while to get), and the nurse gave me a IV to put me to sleep.

From what they told me, I was first given the supra pubic catheter, they used the tube to fill me with saline solution to clean me out. The HIFU treatment lasted 2 and 1/2 hours I woke up at 11:30AM groggy, had a light lunch, let the sleeping potion wear off and then the nurse, taught me the tricks of dealing with the catheter. He stressed that I drink a lot of fluids, 48 oz. a day. And in 4 days I should clamp off the catheter and try to urinate normally. At 3PM we were driven back to the hotel by the HIFU team, where I sat around, pretty much surprised that it was over and I was absolutely fine!

We went out to dinner that evening, we stayed in Puerto Vallarta another two nights, took daily walks on the beach and in town, no exertion is allowed.

I was glad I had elastic waist pants because the catheter was awful to deal with. I hadn’t ever had any health problems in the past, my patience level was very low. I really had to suck in my aggravation. I followed all the rules: just wash with mild soap and water, then put gauze on and then tape over it, no Neosporin, nothing else on it. I did that twice a day in the shower. There was a tiny drop of sticky yellow stuff at the hole, I was told that was normal, my body was trying to expel the foreign object. The bag has a strap that attaches to your leg during the day and at night you attach another bag to the tube and hang it over the side of the bed, I slept fine on my side or back.

I took the pills prescribed, all just for caution: Cipro, for a few days to make sure I didn’t get infected. Flomax, for a month or longer to relax the prostate/bladder neck for better healing. Detrol, until the catheter is out, it relaxes the bladder so it doesn’t spasm trying to get rid of the catheter. And he prescribed Cialis for a month to keep the blood flowing. I had taken Viagra once a few years ago, it was awful, it gave me a hard on for 4 hours, but Cialis wasn’t anything like that. I felt normal.

On the 4th day I clamped off the catheter and urinated fine, re-clamped after two hours so the dead prostate particles could keep coming out the tube. I understand that the tube keeps the particles from clogging up in the urethra. If a clog were to happen I might need a TURP– roto-rooter of the penis, so I made sure to drink a lot and keep flushing out the bits. The next day I clamped off the catheter again for 4 hours and urinated normally, the next day 6 hours, just to keep my muscles working. Plus each time I peed I measured what was still in my bladder by unclamping to check, if the amount was below 2oz. for a couple days, then I was ready to have it removed. .

I was a bit nervous about having sex, so I waited another 5 days, my catheter hole was now healed up….my wife was dazzled that there wasn’t a mess, and I climaxed normally. (:

I stopped taking Detrol when the catheter was out, but continued taking the Flomax for 2 more weeks, until my prescription ran out, and I kept taking the Cialis for a month. Sex was the same as prior to HIFU after the Cialis ran out.

It was well worth the $$$. All doctors charge the same, so why not go to the best one? Insurance may pay…but probably won’t.