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.
I, um, liked it. I could immediately tell that things were gonna work - the first few times there was a little blood and that freaked me out a bit, and I was still concerned about sloughing so I didn't want to make love - well, I did but I was kind of afraid, both of what might come out and that I wouldn't be able to get it up and all. See, despite the surgery going as well as it did and my still having a prostate, the whole experience was kind of shattering - I mean, it strikes at the very heart of maleness, it's hard even to talk about, I told my wife not to tell anybody because at first I was too embarrassed and private and didn't want people to know I had anything wrong in that area of my body because what would they think? I also didn't want people to worry, but I got over all that pretty soon - it's impractical not to tell people, my wife would have had to either be evasive or outright lie and I didn't want to put her in that position. Plus I had to tell my younger brother so he'd be aware of his own chances of getting PC.
We made love again three months after surgery - our last time before surgery was in our hotel room across from the giant Regensburg cathedral, and I swear I had my orgasm at exactly the same time the giant bells were gonging for Sunday morning mass. They kept going long enough for us to finish and scramble into our clothes and run across the platz to see the famous boys choir. I'm pretty sure we were the only spectators who'd arrived that way.
Anyway, our first time after surgery was wonderful, thanks to my wife who took me by the hand metaphorically speaking. I had an orgasm, and though it was dry - I haven't started putting out much semen yet, cooked prostates have issues about the whole thing - it was as good an emotional experience as ever.
The doctor told me to take Cialis to be sure I'd get nocturnal erections so as to keep the blood supply up and the veins and arteries open - one thing I learned about prostate cancer is that if you become impotent your penis can start shrinking because you don't get erections like you used to - there's more to an erection than feeling good, but isn't it great that something that feels so good is so good for your health? The impotence thing was a major, major reason I chose HIFU, and continence was a major reason - I'd say it was anywhere from 51-67% sex and 49-33% pee, depending on my emotional state on a given day when I was thinking about it, which was about 24/7.
The surgery itself was 8,000 Euros (about $12,000) and my doctor charged me about $16,000 on top of that - his fee included all post-op care for a year and his hotel room and airfare, and we had to pay his colleague brother urologist to handle their whole office for a week (father and both sons are urologists - surely there's a psychology journal article in that if not a book). It was pricey, yes, but then he knew everyone at the hospital in Regensburg because he brings several patients over every year - usually there's more than one so his expenses are divided among them - this time I was his only patient. The surgeons there have vast experience with HIFU, and they spoke good English, but my doctor's presence was crucial. He and his wife also guided us around the town and helped with transportation. It was worth the extra cost, though I would have been happy if he'd charged half as much since he didn't actually do the surgery himself. But I have no problem at all with it, given the outcome.
I had my first blood test results a couple of weeks ago, three months after surgery - my PSA was 1.5, which is really good considering I still have a prostate. I'll have a biopsy in October, the month of our second anniversary. That will be an important one, and I can only hope. I had no idea what the blood tests results would be, so I had to just sweat out the three months. Now I have to sweat out 3 more months, but my wife and our love life are making it not quite so stressful. If the biopsy is good, I think it's another one 6 months later, then yearly for awhile, along with quarterly or semi-annual PSA tests. I've never been so full of holes as I have been since April of this year.
If you want to look more closely at HIFU, I can give you my doctor's name and phone number - he's in the LA area. I strongly advise against HIFU surgery anywhere but Canada, Germany or France - and I'm not too sure about Canada, how much experience they have, and from what I was told it's as expensive in Canada as it is in Europe, and Europe is much more fun. The French and Germans probably have the most experience and the best equipment in the world for HIFU, and their towns are full of cobblestones and narrow streets, and Regensburg is a major chocolate center, plus it has all those disgusting white sausages and beerbeeerbeer and drunken singing Germans at 3 am and of course the old torture chamber in the city hall. You can't go wrong in Regensburg.
So I'm still angry I got cancer, but happy I chose HIFU, happy I chose my doctor (it's vital), and most of all happy my wife chose me - I would probably not have bothered without her, and she's remade my life - well, we've remade each other's, but really I could not have done this, wouldn't have even had the chance, without her. Having cancer makes you realize fully how important your partner is, an incredible sense of gratitude and love and closeness develops as you go through this together.
A couple of notes suggested by my wife, whose suggestions I've learned to follow (because she's smarter than I): When I say the German doctors had "vast experience," I mean that my surgeon in particular has done hundreds of HIFUs and has been the lead author of top European studies. The hospital and doctors in general exuded confidence and competence - you could eat off the floor, and most people spoke at least some English - my surgeon team was fluent in English.
Also my own urologist had also taken patients for HIFUs in Toronto, Canada.
My surgery took closer to 1-1/2 hours, not 3, apparently. My sense of time is usually much more accurate.
And the part I wrote about sex is making my wife blush, so don't read it. ;-)
Congrads on your outcome! and it's great that you posted your story, I hadn't heard of HIFU until a couple days before our scheduled surgery--man am I happy we found it.
My husband also had HIFU done, but he used a doctor from the USA who uses the American Sonablate machine, which means you don't need a TURP (very important to us!!) NO TURP!! sometimes they cause scar tissue and problems later on.
My husband had it done 8 months ago, it was a 2 hour procedure, and we were back on the beach. We went to Mexico, our doc is the doctor who has taught all the Canadian and American doctors how to do HIFU. He's been flying to Nassau and Puerto Vallarta every weekend for 6 years, and I can't find anyone who is unhappy with his results. He's done over 700. The experience of the doctor is upmost important, as he said to me, "he feels badly for his first dozen patients, there's a learning curve to this".
They use HIFU for more advanced PCa in Japan, and have great success. It costs $25,000. from Dr. Scionti and worth every cent. My husband had to take Cialis (10 mg) to keep the blood flowing for several months, but all's well now. Never had a minute of incontinence. We had sex two weeks post, we would have sooner, but the supra pubic catheter kinda got in the way! PSA of 0.4 six months post.
HIFU is the only way to go! if you are a canadidate...call to find out 888-874-4384
I am a 49 yr old male and had HIFU in Mexico by Dr. Garcia August 2010. Had PSA of 4.2 before the procedure and 1.2 ng/ml 3 months after. At 1 year my PSA dropped to .7 ng/ml then this last month back to 1.2 ng/ml. Not sure what to do at this time. Emailed Dr. Garcia a week ago about my concern and haven't heard back from him.
From what I know, this is what it is supose to do, kinda like radiation, it drops after the first test, then resumes, that's quite a drop, I think that's a good sign. Your first test is the real result, I don't think it ever stays as low as the result when it hits nadir. My husband's popped right back up too.
To answer your question though, I'd bet he'll say don't do anything, except get tested in another 3 months.
Can you provide any contact details for the team in Regensburg DE? Your 'out of pocket' costs were probably less than the co-payments I'd have to pay here. (NYS)
Due to a recent hernia injury at work I was CAT-Scanned twice (without and with contrast) which also showed-up an enlarged prostate. PSA was low (I was told) but never given the number. (will check Monday)
I'm thinking the prostate MAY be a factor in my constant constipation so I'd like to know if HIFU or TURP can fix that - but ONLY by someone with a LOT of practice. (not ready for the grave yet!)
Turned off by some of the docs here in NY. When I suggested a 1991 car crash may be at-fault (internal scarring from seat-belt) and that a bowel re-sectioning might help (helped a friend fix her diverticulitis) he responded that maybe he should remove my colon and put me on a colostomy bag! Haven't seen HIM since.
My name is Jack D. and I have read your interesting HIFU article twice.
I was diagnosed Tuesday of this week with early stage prostate cancer, and I think you and I share the same urologist in Arcadia Ca. I am leaning very strongly towards a trip to Germany, and would like to know how you are doing health wise four years on.
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