This is actually a repost of my last two posts in my earlier thread "How Doctors Failed Me" in answer to someone's question about my HIFU experience. I'm reposting it (in two parts because it's so long) because it's no longer about doctors failing me but about doctors helping me, and because if someone wants to search for HIFU they'll find it.
When I got diagnosed in February 2008 I was angry - literally infuriated because I had taken care of myself and it didn't run in my family and because my doctors had let me go with elevated PSA levels for more than two years and no suggestion of biopsy. I was terrified, depressed, beyond anxious, you name it - any stoicism I had just kind of made itself scarce, though only my wife knew how hard it was for me.
I looked into every possible treatment, from none to radical, and I decided on HIFU because it wasn't invasive, wasn't radiation, and had a good track record of preserving potency and continence, as good as or better than any other method - and believe me my mind was flogging the impotence-incontinence thing, catastrophizing all over the place because sex had taken on new meaning for me for the first time in 30 years - I had just entered my second year of marriage to the perfect woman and I was terrified of having to give up anything that brought us closer, and that's what making love does.
I was also horrified at the idea of having to wear diapers - hey, I work out, do heavy labor in the yard, I'm big and strong, I'm a surfer! I cannot wear diapers! Out of the question, I'd rather die (well, that's what I was telling myself, and really I believed it). I figured that if HIFU didn't work, it's repeatable, and I can try more radical methods if it doesn't work, but I can't try HIFU if I've already had radical treatment - RP, robotic, radiation of any kind, cryosurgery. No matter what they tell you it's all a c rapshoot, so HIFU came first.
Insurance doesn't pay for HIFU in this country, but my insurance wouldn't have paid for anything anyway because it was a lousy policy (almost as lousy as the one I have now). So we were facing a big bill no matter what - cash out of pocket. And the best robotic surgeon here, at City of Hope, would have cost upwards of $40,000. The robotic surgeon couldn't guarantee anything anymore than anyone else, and the risk of losing everything is considerable. And proton-beam therapy, the Latest Big Thing, costs more than $100,000 and there was a 6-month waiting list just to get on the waiting list at Loma Linda for questionable results.
To get HIFU I'd have to leave the country, but still it cost less than any treatment I could have got here. We're by no means wealthy but we had resources (one of those mothers who grew up during the Depression and knew how to save and invest long term and never bought an extravagance in her life - thanks Mom!).
The urologist who diagnosed me told me about HIFU and gave me a name, and it turned out to be a terrific doctor close by. He'd done HIFU himself in Mexico but was turned off by the scene and the poor quality and equipment. He finally settled on Germany, a hospital in Regensburg, very up to date with the latest equipment. The equipment is as important as the surgeon when it comes to HIFU because you've got to have a precise aim and you have to keep the patient absolutely still so the surgeons don't miss - the prostate isn't exactly the broad side of a barn, and the cancer is even smaller if you're lucky. My doctor isn't licensed to practice in Germany, so he acted as both a guide and advocate and was closely involved in the surgery itself to be sure I got what we'd decided on.
What we'd decided on was half a HIFU. My cancer was very aggressive but very limited to one small area in one lobe of the prostate very near the perimeter. I'd insisted all along that I didn't want any more surgery than necessary to preserve my sex life and continence - I didn't want to give up orgasms and semen if not absolutely necessary. So I asked if I could get HIFUed on just that cancerous half, and they decided to go for it.
My particular surgery was actually a ground-breaking thing - I don't think the surgeons had done that before, at least not more than once or twice (not sure), preferring to fry more than less just to be sure But since you can get HIFUed a second time (unlike RP), I decided on the semi-HIFU, knowing the risks, and I got what I wanted. I think the surgeons were interested, too, because if it works it could further the development of this surgery.
I was given a spinal and something that knocked me out, and that was it for me till I woke up. The surgeons had focused an intense beam of high-frequency ultrasound using equipment that hadn't been available some years back - I don't know the details, but this machine is crucial. The Ablatherm. I think. Something like that. My wife has all this embedded in her elephantine memory.
Because I had an enlarged prostate from BPH, I had to have a TURP before the HIFU to reduce the size of the prostate because the machine can focus the beam accurately only so far, plus I had calcifications that could have reflected the beam and stopped it from getting to the cancer. I went from the TURP OR directly into the HIFU OR without waking up. The whole thing took about 3 hours. I think. I wasn't watching the clock.
I woke up with a catheter coming out of my lower belly - I'd known and had been whining about this for some time, and it was a hassle for me, but it turned out well, even the flight home. As my doctor kept saying kind of disconcertingly, the HIFU "cooked" that half of my prostate, turned it to jelly - ugh - burning up the urethra that passes right through, so it was no place for pee2b be for awhile. I actually had to wear a bag on my leg for about two weeks, but after a week at home my doctor told me to sleep without it, so I just had the tube to unplug and plug. Got pretty good at it. I measured the pee and reported it to him, and when it stabilized he took the catheter out.
For a few weeks there was intermittent blood and debris from the cooked tissue, but I was peeing like a racehorse for the first time in years, and then it all cleaned up and I've been fine ever since. HIFU causes some sloughing of the dead tissue that can occur for up to a year after surgery, but I've noticed little or none so far, but then I had only half a HIFU.
I had to refrain from exercise and sex for about two months to avoid bleeding from the TURP - the TURP was actually the more serious of the two surgeries so it needed more caution, and abdominal contractions like in exercise or sex can make you bleed. After the two months he told me to start masturbating - I'm like "whoa!" being told to ...y'know... what's up with that? I mean, it's cool and everything, but I've never been prescribed masturbation before.