HIFU Patient Story

Roy from Alberta

Was I ever surprised when the urologist phoned to tell me that my biopsy results were positive. But that was only the beginning of an arduous and sometimes shocking journey.

My first meeting with the urologist after the diagnosis left me overwhelmed. I recall being handed a colored chart that summarized some treatment options. Cryotherapy was listed on the chart but it was dismissed. Radiation therapy was discussed in passing. Though the urologist did not come out and recommend surgery, it appeared to be a foregone conclusion. He became noticeably perturbed when I asked him if that was what he was recommending.

My elevated PSA was detected during a physical examination in March 2004 when my family physician noted that it has risen about 25% since an earlier physical 15 months earlier. By the time I had the biopsy in mid July my PSA increased another .5 to 4.9. I met with the urologist in mid August and was told that my Gleason score was 3+3 or 6 and the biopsy detected cancer cells in 4 of 6 lobes. The final diagnosis was clinical stage T2B (pathological stage T2C) prostate cancer.

What was unnerving was that after 6 months of casual follow up I was suddenly being urged to a quick decision concerning treatment because of the aggressive and somewhat advanced state of my cancer. Equally perplexing was the urologist's admission that there was an outside chance that my cancer had penetrated the capsule, in which case the surgery would do little to cure me.

The urologist seemed surprised when I asked him to arrange an appointment with a radiation oncologist. And annoyed when I asked him how many radical prostatectomy’s he had conducted and how many had poor outcomes. He told me that I should trust my physician. I believe that is easier to do if the physician could demonstrate that he or she had good hands.

I met with the radiation oncologist in late October. He told me the advanced stage and distribution of my cancer ruled out brachytherapy, but that I was a good candidate for 3 D conformal radiation treatments. Even though I still didn’t know what treatment I was going to elect, I started hormone therapy because I knew it would buy me some time.

My quandary went beyond the concern over how far had the disease progressed. I was and still am very active. As an avid skier, and playing ice hockey and racquetball year round, wearing a diaper during those activities held little appeal. As well, I am self employed so every day I don’t work is a day I don’t get paid. With surgery I would likely be out of commission for several weeks, assuming all went well. Radiation treatments are 5 days a week for 6 to 8 weeks, so no out of town business travel was possible, that is, if I felt well enough to travel.

Radiation and surgery also have other low incidence morbidities. And of course there is a risk of impotence. In my case it was guaranteed outcome if I elected surgery because the urologist refused to consider nerve sparing surgery because of the because possibility the cancer had gone past the capsule. Nor did radiation appear to offer me a more positive outcome. However neither was a major concern. I had survived a nasty divorce ten years earlier and had leaned to cope with the diminished sexual activities.

While deliberating my conventional treatment options I frantically searched the web for a better solution. I checked nearly every North American hospital and university web site that was renowned for their medical prowess, hoping to find an experimental treatment that would be my salvation. Few mentioned HIFU, and even then it was only a token reference. It wasn’t until I began searching international web sites that I became aware of HIFU.

HIFU had been used in Europe since 1997. Early treatments were promising, but frankly not as good as either surgery or radiation . However, the advent of new technology yielded far better results. And the most recent studies in Europe and Asia reported success rates that paralleled or exceeded resulted achieved by conventional treatments during for the first two years. Although I was aware that true results can take up to 5 year to obtain, I also learned that HIFU treatments can be repeated, or I could simply elect a traditional treatment if I was not satisfied with the results of the HIFU treatment.

I was treated on May 1 2005. I attended the clinic the day before for a pre-treatment assessment by my physician, and again the day after I was treated. My lower back and pelvic area ached when I woke up after the treatment. I had injured my back a few weeks earlier playing hockey and the HIFU probe likely aggravated that condition. I was in recovery for approximately 2 hours, then felt well enough to return to my hotel. After a celebratory supper, I retired early, and to my great dismay did not wake until 7 AM the following morning. A swollen prostate meant I had been waking up to 5 times a night for longer than I can remember. So twelve uninterrupted and pain free hours of sleep was exactly what the doctor ordered. Just remember to attach a large bag to the catheter. After my post treatment check up, I returned to the hotel, packed and took 5 hour flight home. The next day I was at work.

My PSA has been checked every 3 months. Each reported my PSA as being <0.02 ug/L, which means there is not detectable PSA, hence I am for all intents and purposes cancer free. I just passed my second anniversary and will be now be tested semi annually for some period of time. Pretty good news in my opinion. Am I pleased with my results? You bet. Would I recommend the treatment to others.? Absolutely. My sincere thanks to my family physician, Dr. T Chua, for having the foresight to arrange for me to have a biopsy, and Maple Leaf HIFU and my treating urologist, Dr. Ed Woods, for a job well done. You can say I owe them my life.

Notwithstanding the good results I have enjoyed I have to say I was disappointed with the support services offered in my community. Most of the literature and web sites portray the patient in a meeting with family members and an array of medical and other professionals to collectively arrive at a treatment that is in the best interests of the patient. In reality, physicians generally promote the treatment they provide unless it clearly is inappropriate to the medical condition. And the patient, who in most cases has no medical training, is deluged with medical jargon, technical information and assorted probabilities then told it’s his personal decision to make.

If my mechanic described all of the repairs that could be employed to fix a problem with my car then asked me to pick the one that I thought would most likely fix the problem I would quickly find a new mechanic. So why are doctors any different?

Equally disappointing is the medical community’s lack of knowledge or even familiarity with HIFU. And rather than learn about the treatment they are quick to reject it out of hand. Almost every physician I approached about HIFU said it wasn’t worthy of consideration because it was experimental. Yet HIFU has been in use almost as long as 3D conformal radiation, and nobody blinks an eye about the validity of that treatment. It’s no good because I don’t know anything about it not a professional attitude.

Next Story: Chuck from California