THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

After my initial diagnosis at my annual physical in August, when I learned that my doctor had not noticed that my PSA had been doubling for the previous two years, I went for a biopsy at the Brigham in Boston which came back positive with a Gleason score of 8. I then went for a bone scan, which was negative, and an MRI that indicated that my tumor was confined to the prostate.

My urologist sent me to an oncologist in Boston for a second opinion. I immediately discounted hormones and radiation, as the side effects were too great to consider. It looked like surgery was my best hope. My doctor never mentioned any other options.

Right after my diagnosis, after I had regained my composure from the shock, I started doing extensive research on PC, as I knew nothing about it. I read several books including the Guide to Surviving Prostate Cancer by Doctor Patrick Walsh. I googeled Dr. Walsh and found he was at Johns Hopkins in Baltimore. I immediately made an appointment for a consult.

Dr. Walsh was lovely. He spent two hours with me convincing me that surgery was my best option and explaining how his nerve sparing technique would minimize any side effects. I left his office signed up for surgery with one of the new young surgeons on his staff, as Dr. Walsh no longer does surgery. As confident as Dr. Walsh's selling job was, I was not comfortable with the percentages of success he told me I could expect. It is all a crapshoot. I kept reading on the internet and came across HIFU. The more I researched it the better I liked it. After calling UCLA for an appointment to get in one of their trials, they told me to call the Cleveland Clinic in Toronto. Sure they would do it for $25,000. I kept looking. There are several doctors in the US who will meet you in Mexico or the Bahamas for $35,000. I kept looking. I finally found Dr. Chris D'Hont in Antwerp, Belgium. After emailing back and forth several times I set up an appointment for Feb. He has been doing HIFU for the past seven years and getting good results with the Ablatherm. He charges $10,000, which sounded like a bargain. My first consult with him was very thorough. Much more thorough than my US doctors. He gave me an ultra sound, an MRI and a flow meter test, which showed I had a blockage. He said I needed a TURP.

It is now March 16, 2013. I am now back in Antwerp for the HIFU. I had a TURP today. Everything went well. I did not feel a thing. I have two catheters that are both flowing blood nicely.

I will let you know how I do with the HIFU.

I had my HIFU treatment this morning in Middleheim Hospital in Antwerp, Belgium. Everything went well. No Pain anywhere. After the anesthesia wore off I had a light lunch. My urethral cath was removed during the HIFU so I now only have the subpbubic cath that is draining nicely. The color has changed from the bright red that I was getting yesterday from the TURP that I had on Mon., to a light rose color. They got a lot of the chunks out yesterday with a syringe. That was a bit painful as they force a full syringe of water into the bladder through the urethral cath and then suck it out pretty fast. I think this could be more effective than water boarding. Glad that part is over. I should be up and walking around a bit this evening and get to go home tomorrow.

The hospital here in Antwerp is excellent. All the nurses are very helpful. Many of my nurses are students. Otherwise it seems like a US hospital.

Now the waiting starts for my first PSA. Will keep you posted.

Four days post HIFU. I feel absolutely fine. No pain of any kind from the HIFU but a lot of pain from the TURP. My suprapubic catheter is working nicely. I need it just about every time I urinate. There is a big fluxutaion in the amount of urine from the cath after I can't pee any more. Between 20 ml to 150 ml. In adition to monitoring the amount each time, I am also keeping track of:

1. the level of pain during urintation on a scale of 1 to 10. So far it has been between 6 and 9 - pretty painful.
2. the color - it is changing from bright red while in the hospital to rose to now more dark amber.
3. stream strength - so far is it either weak or very weak.

My wife is changing my bandage each day after I shower. She is getting pretty good at it.

I told her that most people pray for peace but I am just praying for pee.

One week post HIFU

The checkup with my doctor went well. He did an ultra sound to check my kidneys, which are fine, and I did the flow meter test which showed a very weak flow.

I had a lot pain when trying to pee. On a scale of 1 to 10, I was at 8 to 9 for past three days. Then it went down to about a 7, and now it is a 4 which almost seems normal. My residual urine is also decreasing from over 100 ml yesterday. I have been at about 30 ml all day today.

I am looking forward to having my suprapubic cath removed on Tues. if all goes well.

Then it is just waiting for that first blood test in three weeks.

Two weeks post HIFU - feeling great

I had my suprapubic cath removed yesterday. What a relief. My pee numbers had been tracking nicely for the past four days. All residuals were under 20 ml, pain level significantly reduced, pretty clear instead of pink, and actually a bit stronger stream. Now I just have a small bandage were the cath came out. No leakage. My stomach is pretty bruised from the strong tape from the bandage. It already feels a million times better. The only thing I notice is that last night I had to get up to pee about four times. This is new. I hope it will subside. The other strange thing is that my wife is now doing all the heavy lifting and most of the driving, as I am not supposed to lift anything heavy for six weeks. Let's see if she gets used to it.

PSA in two more weeks. I will keep you posted.

One Month Post HIFU

I just had my one month PSA test this week. I was pretty anxious waiting for the results from the lab. From all of the reading I had done I knew I wanted the results to come back as nondetectable or close to it like .01. But this is a PSA result from someone who had surgery and now has no possibe source of PSA. So when my doctor's office called to say my PSA was .68 I was not sure how good this was. I know the PSA can fluctuate during the next two years but that if it gets close to 2.0 or over 2.0 it is a sign that the remaining cancer cells are growing and producing PSA. So I emailed the results to my doctor in Antwerp. He got back to me right away saying that .68 was an excellent first score and not to worry. What a relief. He explained that since he did nerve sparing on one side he knew he left some prostate tissue in tact and that there still could be a very small amount of cancer cells. But that since my PSA was 11.89 before the HIFU, the .68 was a great significant drop. He was happy and I was ecstatic and reassured.

The other big change I have is that I finally have totally clear pee with no more traces of blood. I am also pain free while peeing. What a relief that is. My pee stream is now like a fire hose as opposed to the very weak trickle I had before HIFU and for three weeks post HIFU.

I am still sticking to my diet and enjoying it. No meat or chicken, no dairy, no sugar, no white flour, no processed foods. It is not hard to do when you know that this diet starves cancer cells and builds your immune system. The added benefit is that I lost eight pounds and can keep it off easily.

Now I am just waiting for the next two weeks of my six weeks with no work, no lifting, and no sex to be over so that I can get out there and work in my garden, etc.

June 12, 2013 3 months post HIFU

I just receieved my 3 month PSA results. .06 which is down from .68 from my one month test.

My doctor says this indicates no cancer. I am very releaved. For the past three months I had significantly changed my diet after reading Anti Cancer by David Schreiber. I had no sugar, white flour, dairy, or red meat - it wasn't that hard. I was determined to starve any remaining cancer cells I may have had. Now I plan to maintain this diet with some moderation for the next three months.

My pee report is excellent. Very strong stream, no drips, and no waking up at night.

Sex department is still not so good. Can't maintain an erection for very long. Cialis did nothing.

My doctor now recommends a daily dose of 5 mg Cialis and then 20 mg before sex.

I'll let you know if this works.

Overall - I am feeling fine, excerising, and now feeling very glad I had the HIFU.

6 Months Post HIFU

My 6 month PSA is 0.09. It is up a bit from last 3 months of .06 but my urologist says this is normal and not to worry.

I am maintaining my diet of no sugar, no white flour, no red meat, no processed foods.

I am using my juicer a lot and have a fruit smoothie several times a week for lunch. I have lost 12 pounds and I am keeping it off with no trouble.

Pee dept. is still great - no waking up at night.

Switched to the little blue pill 50 mg - I am cutting th 100's in half. They work great. It is quite amazing.

Overall I am feeling well, working out and enjoying life again.

My 9 month PSA is 1.2. It is up a bit from last 3 months of .09 but my urologist says this is normal and not to worry. The area of concern is the rate of velocity of the increase. Although my PSA is rising, the rate is not a concern at this time. If it contiues to rise after 1 year post HIFU, then I will need to consider the options, but for now I am waiting and trying to remain positive.

I am continuing to maintain my diet of no sugar, no white flour, no red meat, no processed foods, but with a bit more moderation. I am also exercing more- 100 crunches a day and working my way to 50 push ups. I can do about 40 good ones now.

Pee dept. is still great - no waking up at night. Sex department is pretty good.

20 months post HIFU, my PSA has started to rise. It should be 0 or close to 0. It was 1.2 at 16 months, 1.7 at 19 months and then 1.62 at 20 months. One of my YANA friends suggested I contact Dr. Stephen Scionti in Sarasota, FL, who is one of the best HIFU doctors in the US. Dr. Scionti said he would see me as a consult. He asked me to get an MRI and send him the scans. My doctor in Belgium agreed. I then had an appointment with Dr. Scionti in Dec., 14 in Sarasota. He used my MRI to develop a pin point layout for targeted biopsy. Dr. Scionti believes that only a targeted biopsy can give true results. A regular biopsy is just a set of random shots that could totally miss any cancer. Don't get one if your doctor suggests it.

The result of the targeted biopsy was negative, which means he did not find any cancer in what was left of my prostate. This of course we a huge relief. He told me not to worry about the elevated PSA and to have a good life.

Except that now my PSA is continuing to go up. Dr. D'Hunt, my doctor in Belgium is now suggesting that I get a PSMA scan (Prostate Specific Membrane Antigen-scan) which is more sensitive than Choline PET scan. Dr. Scionti agrees. This is only given at Mass General in Boston. Dr. D'Hunt is now thinking that the cancer much have gotten out of my prostate before my HIFU and is now out in my body. The PSMA is the only way to determine if this is true.

I have now found a new urologist who specializes in PSMA at Mass Gen. - Dr. Mark Garnick. I am now waiting for an appointment with him and hope to have the scan in the next week.

Sitting on pins and needles. I will keep you posted.

Marc's e-mail address is: marcladin AT gmail.com (replace "AT" with "@")

NOTE: Marc has not updated his story for more than 15 months, so you may not receive any response from him.