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Jim W and Andrea live in Arizona, USA. He was 60 when he was diagnosed on June 16, 2009. His initial PSA was 3.2 ng/ml, his Gleason Score was 6 and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

My story is just beginning. I am actively researching treatments, but I am leaning to Proton Therapy at Loma Linda.

I can't believe how difficult it is to get unbiased information. Everyone touts their on treatment modality, but it appears as though the best evidence is the experience of those who have been treated. I can't find anyone who will admit to having a less than positive experience at Loma Linda.

Later: I just wanted to add that shortly after being diagnosed, Andrea and I met with my urologist who explained my options and recommended that I have open radical prostatectomy. He said the robotic surgery was fairly new and promising, but he didn't like it because the surgeon couldn't feel anything.

The urologist failed to mention proton therapy and when I asked him about it he dismissed it as being similar to EBRT. A few weeks later I met with a surgeon who used the Da Vinci robot. He also explained the available therapies and the advantages and disadvantages of both. He also mentioned HIFU as being promising but it is still experimental. Naturally this surgeon said I was a good candidate for laproscopic surgery. I mentioned to him that my urologist said that the disadvantage of laproscopic surgery was the lack of feeling. He replied that it is true, but I can see so much more in 3D magnification. He said he used to do the open surgery, but has been one of the first surgeons to use laproscopic surgery in the Phoenix area. He said he could hardly think of a reason why he would do open surgery now.

I noticed that while he was explaining all my options, he failed to mention proton therapy. I asked him about it and he also said it was no better than EBRT.

Why is it that these urologists both omitted proton therapy as an option? Is it because it is not available locally? or because of lack of knowledge? or because they are biased toward their own specialty.

In doing my research I have noticed many other men were never informed of the benefits of proton therapy. Has anyone received unsolicited information on proton therapy from their physicians? If you did, do you live near one of the proton centers?

 

UPDATED

September 2009

 

 

My research continues, but I am pretty much settled on IGRT (Image Guided Radiation Therapy); and the only question remains what system to choose. I have consulted with a radiation oncologist at the Scottsdale Health Center regarding their Novalis system and another radiation at the Banner Desert Cancer Center in Mesa, AZ about their Varian Trilogy System. I have also spoken with patients who have undergone both treatments and they are all extremely pleased with both.

Unless I find anyone who has had a bad experience with the Triology system, I will probably decide to go to Banner Desert only because it is more conveniently located to home.

Has anyone had any experience with either of these systems? I put more weight on patient experiences now, since all the doctors have their own biases. I must say, however, both radiologists suggested that I seriously consider Da Vinci surgery because of the availability of using radiation later if cancer recurs. Despite this advice, I have decided not to go the surgical route because right now my biggest concern is impotency. Although radiation still carries such a risk, from what I have heard it can be resolved with Viagra or Cialis.

I have pretty much ruled out proton therapy only because of the logistical problems of living away from my family for 2 months. All the doctors and I are confident that no matter what treatment I choose I will have a long life. My only concern is to minimize the side effects.

 

UPDATED

October 2010

 

 

It has now been almost one year since I started my treatments. [Jim doesn't say which system he chose in the end - merely stating EBRT (External Beam Radiation Treatment).]

I finished treatment on December 22, 2009. My first PSA reading after treatment was 1.7 in April, 2010. In July it was down to 0.65, but now (10/10) it has gone up to 0.99. My urologist says fluctuations are normal and is not concerned. He doesn't want to see me for another 6 months. How normal are these fluctuations? [Ultra-sensitive PSA tests are not consistently accurate.]

 

UPDATED

April 2011

 

 

I just received my latest PSA. It is now down to 0.40! I am extremely relieved, but still somewhat anxious for the future.

There are no real long term side effects. I do have to occasionally take some Cialis, but I think a lot of my problem is psychological rather than physical. Ever since my urologist told me that most radiation patients suffer from ED 1 - 2 years after treatment, I have had a problem.

To clarify some information on my previous post. I received my initial treatment at Banner Desert Cancer Center in Mesa, AZ with the Varian Trilogy IMRT.

All in all, I am very pleased with my treatment.

Jim's e-mail address is: whelanjj@gmail.com