THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
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 own 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 laparoscopic surgery. I mentioned to him that my urologist said that the disadvantage of laparoscopic 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 laparoscopic 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?
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.
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.]
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.
In response to a reminder, Jim said:
I am waiting for the results of my next PSA due in June.
I just received my latest PSA result, 0.91. While the doctor is not concerned, I am beginning to be. It was 0.04 in April, 2011, 0.06 in December, 2011 and now it is 0.91. I guess I just have to put my faith in God and the urologist and wait another 6 months. I don't think I am going to worry about it too much, but it will always be in the back of my mind.
I am beginning to think that I should have opted for surgery. At least I would have had some conclusive results.
The last few months have been rather worrisome for me. In April I suddenly started bleeding profusely from my rectum. I went to the emergency room and spent two days in the hospital with no diagnosis, but a lesion was found in my rectum that had to come out. The GI doctors don't think the lesion had anything to do with my radiation therapy, but my urologist isn't so sure. He and I are both suspicious the two are related.
Last week I finally had surgery to remove the lesion. It was benign. But a few days after the surgery, I had my semi annual PSA test. I found out yesterday that my PSA was up over 2.5 and my urologist wants me to come in for a biopsy.
I am hoping that my increased PSA level is due to the inflammation from the surgery. Has anyone had any experience with this?
Nothing much has changed. PSA is essentially unchanged.
In retrospect, however, I am beginning to wish I had my prostate removed surgically. The semi-annual PSA check is starting to stress me out. I keep praying and keep my fingers crossed.
There is nothing new to report. My PSA as of April 19 is 0.4 ng/ml. I am a very healthy 67 year old.
The only thing that really bugs me is anticipating the semi annual visit to the urologist. I fear (perhaps needlessly) that my PSA will start rising. I am beginning to wish I had chosen surgery and be done with it.
Jim's e-mail address is: whelanjj AT gmail.com (replace "AT" with "@")
NOTE: Jim has not updated his story for more than 15 months, so you may not receive any response from him.