This all started when my wife decided that one of us should get a vasectomy. I guess that I started out at a disadvantage. My GP referred me to a Urologist who felt that my PSA of 3.8 was high enough to investigate and the follow up visit had me somewhat stunned. I didn't see THIS coming! On September 17, 2007, John Hopkins had agreed that my biopsy (one of 12 cores) was positive.
The next step is all too familiar to everyone on this site - your Urologist is a surgeon who recommends surgery and he sets you up with a Radiologist who discusses seeds. After such 'enticing' options (and incontinence, rectal bleeding), Anna & I realized that we had to step up and research our own options. We surfed the net, and quickly became much more knowledgeable about prostate cancer. We arranged our own consultation with a research oncologist and this was a turning point in our choice of therapy.
Oh yeah, the other 'first thing' that you do is probably pick up a couple of "miracle books" about beating prostate cancer, jumping into a diet of vegetables and vitamins and dropping about 10 pounds.
We focused our attention on finding a well established HIFU practice and we contacted a clinic in Heidelberg, Germany. My stage was at T1c, Gleason score of 3+3 and my volume of 42cc / length at 40mm. I was scheduled to be at the clinic on Dec 10 with a procedure scheduled for the following day. Then came the scramble: damn the finances, secure some hotel reservations, airfare; fly in big brother to watch our 5 year old daughter and pups, and monitor the currency exchange for a lucky break. No lucky break there. I do have the advantage of travelling with my wife, a Polish nurse who did her internship in Germany. My doctor also had the good taste to marry a Pole. Our first meeting is in three languages.
The procedure generally takes 2-3 hours; I was done after 4.5 hours. Must have been the prostate size. Woke up HUNGRY...and sporting some new equipment. My catheter was equipped with a beer tap! I needed about an hour before I was stable enough to get up and Anna & I took a short walk back to the hotel to take a quick nap. We got out later that day to look around town. What better place to be when you are required to drink LOTS of FLUIDS! "Cheap domestic beer" never sounded so good. We closed out the day toasting with some very familiar Kentucky proof bourbon.
Suffice it to say, some HIFU websites paint a very rosy HIFU experience. Jump off the table, enjoy an evening of dancing and dining and fly right back to normalcy.
I think the only thing keeping me in a party mood on procedure day was the epidural. The second day was an adjustment. On the third day, I was in pain. I stumbled back to the clinic and the doctor was concerned with leg numbness. No leg numbness, but my catheter required a tune-up. Within the hour, I was back soaking up the last sights before we continued to Prague.
We scheduled a rather interesting itinerary, partly because we were spending money like my life depended on it (it did). We decided to stay in Prague because the lodging was a bit cheaper (but not like the last time I was there) and Anna & I both like Prague a lot. We were going to return to Frankfurt and spend a few days there before departure, but the catheter was getting to me and I realized that it had to come out back home (because of cabin pressure). Lufthansa made a rare exception to bump me on a flight that day and we returned home on December 20.
My catheter came out Friday morning (December 21). YES! FREEDOM!
Be careful what you ask for.
I was screaming in pain to have it returned. I traded a second catheter for a litre of urine that I couldn't pass. The second catheter came out on New Year's day, and they tested me out this time by pouring a litre of sterilized water directly into my bladder. I think I prefer drinking orally.
January was a month of emergency pit stops. I managed a 20 minute drive to work and rushed to the bathrooms every time. I had a few truly embarrassing and humbling moments, including the christening of a drive-up ATM machine. I also met my next-door neighbor's daughter-in-law, who has been fighting cancer for years; she's been a vegan all of her life. I'm suddenly disenchanted with my soy milk and twig diet.
February was a transitional time where I experienced some of that 'razor-blade' urination that everyone 'raves' about. March was pretty much the same. It's the middle of April now and I'm preparing myself for the first PSA since HIFU Suddenly I'm apprehensive all over again.
April 28: Well, the PSA came back as 1.5. Hoping for PSA < .2, I took the info with a bit of shock. My local urologist is surprised, "That's good!", he tells me, "it's going down". I don't think so; I emailed my HIFU doctor in Germany. He's replied that he doesn't like it either, requests another PSA in six weeks (I have my next one in 3 months, ask to have it moved up. I hear a short outburst about how my local urologist is a renowned urologist. I'm again in the middle of this; "They're both fine doctors," I reply.
It's really my cancer. I'm the one fighting with insurance companies, translating the emails, and getting the conflicting diagnoses. My HIFU doc has suggested I get another PSA test in a few weeks, and if this last one is not an aberration, to prepare for a PET-CT and perhaps another HIFU procedure. Just when everything was getting put back together.
It's Monday, July 28, and my PSA has fallen again. This time, I am at 1.0! That was the number I was shooting for! I'm still adjusting to the news. I don't know what I was going to do - will it go up? down? Am I ready for another procedure? Alternate therapy or just living on broccoli for the rest of my days.
Well, right now I'm feeling somewhat victorious over a disease that has plagued mankind for millenia. Not this time, you bastards! This one's for you, Frank Zappa. And for my own dad, who passed away 7 years ago. I'm toasting tonight with some of Kentucky's finest. I will revisit this again in three months.
Well, it's Halloween week and trick or treat! I spiked to 2.5! Now this is scary. Of course, I'll need to juggle this between my local urologist and my HIFU doctor.
I just ran across the article about how Vitamin E and Selenium are now the bad guys. [Robert may be referring to an article concerning the discontinuation of a trial (there were many such articles). Anyone interested might like to see the discussion at SELECT Bites The Dust.] One linked to an INCREASE of PC and the other, a ticket to diabetes. Another article caught my eye about the positive properties of vegetables and alcohol in the diet. [For an amusing take on the positive value of various things go along to Cure du Joure.]
Well, at least some things are looking up for now.
I just came back from my urologist and I'm back to 1.0! The previous reading of 2.5 had me check in with an oncologist who tested me at 3.77 in January. I don't know if many of you out there have had a second HIFU, but there's a whole new set of questions for this.
As long as I keep this PSA down, I'm feeling pretty good.
Still, I wonder about this spike, what was it? [I doubt that Robert will ever know for certain. PSA is NOT prostate cancer specific, so PSA values can rise for any number of reasons - see PSA 101 for relevant information.]
Well. I stopped back at my local neighborhood urologist and he reported that I am at 1.96 PSA. Don't know what to conclude about this; just taking one day at a time.
I've been off radar for the last two years. I haven't been to my proctologist. I have been busy with so many other things. But I am planning to get back on the PSA checks and will report as soon as I do.
Well, I've been away. I think the whole post cancer thing was overwhelming and I've had a bit of a hiatus from the checkups. I just got some results and I'm good. PSA is 1.44 and all is well. Well, even my Urologist agrees with me. I'll be checking in about six months. Nothing new -and that's good.
I checked in with my Urologist on 29 JUL 14 and we're both quite pleased with my condition. I've been put on the backburner for now as my next appointment is a year away. There's always a bit of doubt or wonder as to my outcome if I had chosen another treatment (or none at all). I'll never know how aggressive the cancer was when I was diagnosed. But I'm still here and doing well. My biggest health concern now is Acid Reflux (perhaps early Barrett's) and I wonder if toasting my prostate didn't have a direct or indirect affect on my heartburn problems. But I have another doctor for that this month.
Had my annual PSA followup a few weeks ago and I'm still doing fine. Nothing to report.
I've not made any updates to my story simply because I have none. It's been nearly a decade since my HIFU treatment and I stopped thinking about it. Now I'm just getting old. I'll let you know if something happens along the way. Thanks, all.
Robert's e-mail address is: firstname.lastname@example.org