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BRONZE

WTL and his wife live in California, USA . He was 61 when he was diagnosed in February, 2008. His initial PSA was 8.8 ng/ml, his Gleason Score was 8 and he was staged T1c. His choice of treatment was HIFU. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2010 SO THERE IS NO UPDATE.

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 my doctors had let me go with elevated PSA and no suggestion of biopsy for three years. 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 crapshoot, 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 in the LA area, 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 (Benign Prostatic Hyperplasia), I had to have a TURP (Trans Urethral Resection of the Prostate) 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 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 plaza 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. (If you're comfortable handling European hospitals and doctors by yourself, you can save a lot of money, and your home urologist can handle the post-op care - just be sure to keep him/her fully informed.)

I had my first blood test results a couple of weeks ago (July 2008), 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 2008, 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[Dennis Moore's story (and other anecdotal evidence since his treatment) seems to indicate that the facilities in Belgium might be worth considering as well.] - 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 beer, beer, beer 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.

 

UPDATED

January 2009

 

 

My 3-month post-op PSA was 0.6, but my 6-month PSA was 2.5. That scared me, but then my 6-month biopsy was clean. My doctor says (and I agree) that the rise in PSA is because I still have a functioning if smaller prostate that is putting out slowly increasing amounts of semen, and I still have a sex life with ejaculation. I am by no means assured that I am cured, but at this point I’ll take what I can get.

Right now, too-early arthritis, lots of plaque in my heart arteries (high risk for sudden death – nice!) and recent arthroscopy on my knee are my big concerns. The doctor says no PSA again until April, one year after surgery, but I don’t think I can sweat it that long, so I’m getting a count in January 2009 – if it’s good, I can relax, and if it isn’t good I want to know ASAP.

I’ll get another biopsy in April, and then annually. I sure don’t like them, especially the recovery period as I wait for the blood to stop coming out in the semen – which means I don’t want to have intercourse. Still, if that’s the only sure way to tell...and I’m not even a year into the 10-year survival period. Good lord.

On the other hand, I live in Los Angeles, and maybe I have a bigger chance of being killed by some moron (LA is way over-represented in this category of human sub-par intelligence) texting, eating and applying makeup while driving than I do by prostate cancer – glass half full! ;-)

 

UPDATED

February 2009

 

 

On my own volition - stemming from anxiety about the 2.5 PSA I got in October six months after HIFU, albeit with a negative biopsy - I had my PSA checked again in January. It was down to 1.0, which was an enormous relief. I also had the free PSA checked, and that was a more worrisome 14% - but my urologist said the key things were the PSA itself and the biopsy. I don't think I'll ever stop worrying about this, but I guess that's the price you pay, and pay, and pay. The one-year biopsy is in April.

Meanwhile, urologically and sexually everything works great, and I'm gradually producing more semen, too. Considering the alternative, I'm kinda happy about the results.

Cheers!

 

UPDATED

May 2009

 

 

My one-year pre-biopsy PSA in April was 0.8, which was good. The biopsy itself was not. Cancer was found in one core (of 14), though only 3 percent of the core was malignant. It was a Gleason 7 (3+4). Not exactly what I was hoping for, but it could have been far worse, of course - and remember that I still have a functioning prostate, having decided to treat only the lobe where cancer was found. The surgeons had apparently not got it all, nor had the 6-month biopsy found it - not too surprising, given that biopsies are a little like searching for a needle in a haystack. Nonetheless, I was shocked. Just as hard to take was my wife's tears.

This part of the story is one of serendipity, which I tend to honor and take advantage of. My surgeon in Regensburg, Germany, Andreas Blana, was leaving the hospital there to set up a new HIFU program at a hospital in Nuremburg. His last day in Regensburg was May 21. I had gotten the biopsy results just in time to catch him before he left - his replacement was someone much less experienced. My own urologist, who takes his patients to Blana and consults with him during the procedures, was going over on May 10. On short notice my wife and I were able to get airline seats, and the clincher was that we could get our "old" hotel room at the Kaiserhof, directly across the platz from St. Peter's cathedral.

Since everything fell into place so seamlessly, virtually into my lap, we decided to go for it - though the flip side of serendipity is that I felt my decision was being made for me by circumstances beyond my control. A Gleason 7 isn't one I felt comfortable watchfully waiting, and Dr. Blana's new program at Nuremburg would take awhile to get up and running - a proficient team of doctors and technicians doesn't just emerge out of the woodwork. If I wasn't surprised at the diagnosis - I still had a prostate, after all - I was certainly shocked and dismayed, and it was April 2008 all over again: a whirlwind of life-altering decisions made in great urgency with no firm sense that I was making the right decisions.

So we flew over on May 8, and I had the surgery on May 12. The only complication was my very sore right shoulder - old injuries exacerbated by arthritis were causing constant and severe pain, and the surgery required I lie on my right side. As before I got a spinal anesthesia - waist-down only - but unlike the first surgery they didn't put me under with Valium. Instead I was awake the entire time, so I got to not only hear the doctors' discussions and wonder what was going on, but I also got to feel the intense pain of my shoulder and was moving about trying to relieve it. Dr. Blana had to leave what he was doing and come up to tell me to stop moving. I was in agony, though I couldn't feel anything where they were working. Later my doctor told me he couldn't understand why the anesthesiologist refused to put me under completely to relieve my pain and anxiety. After all, it's crucial that the patient be absolutely still so the ultrasound pulses go exactly where the surgeons wa nt them to, and my upper-body movements were affecting the position of my paralyzed lower body.

Another bit of serendipity - my surgery was scheduled for 7:30 am, but was delayed for about five hours because the HIFU wand was broken. Apparently someone had put its cover on too firmly and cracked it, so Dr. Blana had to have a new one sent up from Munich, about an hour away. It was fortunate there was a spare, I guess, and that the driver didn't get in a wreck on the autobahn, where speeds over 100 mph are common (on our way from Regensburg to the Munich airport to fly home, we rode in a Mercedes van with four other passengers, and the driver averaged between 160-180 kph - and we were frequently passed by cars going even faster, like that VW Passat diesel!). Blana told my wife that at least the wand didn't break during the procedure. Well, yes.

It was disconcerting but interesting to hear the procedure. I couldn't feel anything but my shoulder. During the first surgery I wasn't awake to know a suprapubic catheter was being inserted, but this time I was - "OK, you'll feel a little pressure now, this is the catheter" - and it was kind of nerve-wracking to know they were poking a hole through my belly into my bladder; that's something I'd rather not know, thank you.

As for the HIFU itself, the HIFU wand is inside you, but the surgeons are several feet away from your butt, watching a computer display and directing the impulses with a keyboard - lots of taps on the Enter key, I guess, or maybe they used a mouse - and discussing where and how much and how far to execute each pulse. But they never told me what they were doing, so I was left to wonder what, if anything, was happening. I had no idea they had moved from scanning to firing until Blana came up to tell me to hold still and that they had about 10 minutes to go. The whole thing lasted about an hour, I think.

The doctors treated the same side as before, coming closer to the capsule wall and to the urethra - the cancer was in the apex, a very small region at the base of the prostate where it narrows to a point, and it's not the easiest place to work in. But they were doing as I wished - trying to spare the nerves and preserve potency and continence. They were also charging less - I didn't need another TURP, it was an outpatient procedure - no overnight stay in the hospital - and my own doctor didn't charge me at all.

Two days later we were on a grueling flight home, never having gotten over the jet lag from the flight over. We were sleeping at odd times of the day and night, and still are. My recovery is going very well - I got rid of the leg bag for the catheter on the first night home, using only the valve, and I'm peeing normally from my penis. But the natural peeing doesn't empty my bladder yet - that will take some time - so as before I'm peeing from two...er...outlets, the natural (and much preferred) one followed by the catheter. Besides the lack of bad side effects so far, there are two good signs: I have bladder control, and several nightly erections that signal I have to pee (frequent urges to void are normal after the surgery, and having to get up 3-4 times a night is ameliorated by the rock-hard erections I get, which are a good sign for the future - we all love our erections, don't we?).

So now it's back to one day at a time - the day when I can empty my bladder normally, the day when the catheter comes out (a week or two at the most), the day when I can have sex again,the day when it becomes clear that I have indeed kept my potency and continence, the day of the first post-op PSA (not that that means a whole lot - my PSA was 0.8 but I had a Gleason 7 cancer). My doctor will want to perform a 6-month biopsy, but I'm considering forgoing it - it takes me three weeks to stop ejaculating blood, and that's real off-putting for sex. And last time my 6-month post-op biopsy was clean, only to be followed by the "dirty" 1-year biopsy, so I'm thinking that I might opt out of the 6-month needle sticks. I've been stuck hundreds of times in the last year - I'd like to go a year with as few needles as possible, please god.

Now if I could only figure out what to do about my shoulder...talk about an obstacle to sex...