Treated 2002 · Posted 2003
“The treatments were so easy one feels guilty fighting cancer with no more effort than that.”
My story may be of interest to an 'abnormal' group of BOB members or potential treatment candidates. By 'abnormal' I mean those with very high Gleason scores and therefore a little extra worry. By my count, out of the more than 700 members of the BOB, there are only about 45 members who had Gleason scores of 8, 9, & 10. (There were quite a few members listed after the 10 G's that had no Gleason #s listed, so I don't know how to classify them) All the rest were in the 4 to 7 group, which seems to be the 'normal' Gleason classification of prostate cancer patients.
Most cure rates I have ever seen for various prostate cancer treatments are based on categories of PSA (ie. 0 - 4.0, 4.1 - 10, etc.). I asked Dr. Rossi about the lack of any cure rates by Gleason scores in the 'industry' and he said the correlations are better with PSAs.
Be that as it may, and it probably makes very good sense, it doesn't much help those who 'carry' a high Gleason because they have an additional worry hanging over them. But, I guess the only certainty comes with the results after treatment, whatever the treatment. That is certainly also the case with any individual case of PC, but with the more aggressive cancer signified by a high Gleason, there is certainly a higher risk of 'spread'. I'm sure if the cancer is still in the capsule the Proton beams will get it. But if the aggressiveness might indicate a spread then the Photon (or X-rays in other treatments) might not be as efficient due to their diffusion. At least that is the way I understand it from what I have read.
Having said all that, I am absolutely convinced and believing that my cancer was 'taken out' by my combined Proton and Photon treatment from early Sept. to Nov. 15th of 2002. Here then, is my story, for those who might find it pertinent and/or interesting.
Over the last several years my PSA had gone from 1.6 to 2.4 to 3.2 year to year and then last January, to 5.3. While I argued that at age 71 I was within the table shown by the Mayo Clinic for acceptable PSAs for the 70 to 79 age group, (PSAs up to 6.5), the urologist said it was the rate of change that bothered him. Good thing it did. In fact, upon reflection, I think both he and my primary general physician should have been concerned over the 0.8 gains in the prior years. I think the guidelines are no more than .75 per year. But then why split hairs. (Except: with a subsequent Gleason 9, we would have caught it earlier!!!!) But hindsight is always 20/20.
The 5.3 was in late January of 2002 and we were scheduled to go to Arizona for two months - - in the next two days! He said okay, we could do the biopsy in early April when I returned. In February, in Arizona, I saw another Urologist and double-checked the Psa. It was still 5.3 and not increasing. And the 'free' Psa was only 21, which wasn't real bad.
So, on April 9th (both Urologists thought I could wait), I had the biopsy. I then received a call from the Urologist saying that he wanted to see me because they had found a 'small amount' of cancer. Believe me, I hung on those two words for a long time. It did turn out to be only two of twelve samples and only 15% of the tissue in those two samples. But then, in our meeting, with my wife present, he hit me with 'the other shoe' - - - a Gleason 9. I had done enough studying by that time to know that wasn't good. It was a 5 and a 4. The 5 represented that the highest level of aggressiveness was found in the most tissue in the samples. The four was the second most aggressive and in the second most prevalent amount of tissue. (While at Loma Linda, Dr. Rossi's team downgraded it to an 8 --- a 5 and a 3, but the 5 was still the 'bad guy').
A Bone Scan was negative. I had had no palpability from several digital exams, and so the hope was then and, continued right up to treatment time, that we had caught it early, and it was a very small amount, and, therefore it probably hadn't had time to leave the capsule.
I spent three solid months of research on possible treatments. I was not pushed towards surgery (because of the aggressive nature of the cancer and the chance that it had left the capsule) and that was just fine with me! I networked friends, surfed the Internet and became a 'patient expert', at least in my own mind. I didn't have a reference to Loma Linda until very late in the research and then only two references here in Colorado. But then I got the protonbob website information and the testimonials. I had it narrowed to seed implants in Atlanta Ga. or Loma Linda. And then John Ebin, I think it was, put me in touch with 4 other LLUMC graduates who had had high Gleasons too. Their stories and continuing success tipped the scales. Loma Linda moving my time up from Oct. 1st to Sept. 3rd helped too.
The treatments were so easy one feels guilty fighting cancer with no more effort than that. The side effects were minimal and eliminated by medications. I have been home now less than a month and feel great. I do have to build my strength and stamina so that I can play Senior Softball at a tournament level with my 70 plus team, but that is always an 'off-season' problem.
One thing that intrigued me in deciding to go to Loma Linda, was that I was told by some referrals that at the Centrepointe Apartments they have the LLUMC patients in a special area. I remember being told it was a 'wing', but it actually is three adjoining buildings of 16 apartments each. I thought there would be a lot of 'support and interaction' but there wasn't. There seems to be a tendency on the part of cancer patients to stay to themselves and stoically go through the treatments. Meeting briefly at the pool or in the laundry just doesn't do it.
So I and another patient organized a weekly meeting at the apartments in the recreation room and modeled it after the weekly Wednesday night meetings run by Gerry Troy at LLUMC. We had from 20 to 30 people (all patients, not all prostate) each Monday night. I hope it is still going. But every 8 to 9 weeks, of course, everybody is 'new'. 2 to 3 patients/couples arrive and leave every week. The idea is to get to know those who are 'in it together' and exchange first hand information and tips on restaurants and sightseeing. It is an idea that deserves to be kept going, but some one has to lead.
As for me here back home, I was on Zoladex before I got to LL (and it knocked my PSA down to 0.2) and I will be on it for a year and a half as a third bullet in the arsenal to kill the cancer. My PSAs should be no problem during that period of time and I'm not going to even worry about it until the middle of 2004! And I believe this treatment will have cured me.
I am sure I made the right choice. My wife, who was there with me is sure I made the right choice. The Doctors and staff were so great to us and everyone at LL was great. There are just Good People there and they are dedicated to Treating the Whole Man through very good medicine. I especially liked the paintings in the Lobby showing Jesus 'helping' with various medical procedures, and also the Good Samaritan statues on the campus.
I'm available anytime to talk about my treatment and my total experience. I intend to really enjoy softball again in 2003, starting with this winter in Arizona, and with no worry hanging over my head.
May all those I came to know during my treatments and all of you who may read this and go there, have very good cures as a result of your going to the Loma Linda Proton Treatment Center.
I'm just glad I didn't miss hearing about the biggest secret in Prostate Cancer treatment. Most Urologists don't know about it, or don't want to know about it!
Bill Paukert - Boulder, Colorado