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This member is a YANA Mentor This is his Country or State Flag

Paul P lives in Oregon, USA. He was 69 when he was diagnosed in September, 2015. His initial PSA was 4.80 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was Other (Other). Here is his story.

I started tracking my PSA since 1996 and graphed it. Advise you all to start early and make the graph. The line rose slowly until 2012 when I hit an inflection point. During the next three years it rose from the high two's to the high fours, at which time our family physician suggested the biopsy. I had previously undergone a biopsy in 2007 at my insistence because I was concerned by the increases. That biopsy was negative.

Family physicians follow a long standing protocol of becoming concerned when PSA rises into the 4's. I have since learned from a urologist at a major cancer research center that a PSA of 1.5 for a 65 year old or younger is cause for concern, apart from the rate of increase.

After my PSA biopsy in September 2005 the urologist recommended by our family doctor called me with the diagnosis: t1c, 3 positive cores and a Gleason score of 3+4 which he explained was better than a 4+3.He told me that this was not a condition I could ignore. This came as a real shock especially since I have been healthy and fit all my life. The urologist , who is a surgeon, invited my wife and I into his office where he spent about an hour and a half explaining things like the biology of the gland, the risks associated with various treatments, like urinary, bowel problems and sexual dysfunction. He is probably a highly competent doctor, but he was brusque, and I felt reluctant to ask a lot of questions. I was happy that my wife was there to make sense of what he said because I was not in a very good frame of mind. The doctor said that if I elected surgery, he would do it, but if I selected radiation he would recommend me to another doctor. He explained that surgery was the gold standard because it has been done for a long time and there exist long term data as to its effectiveness. At the time I also learned that radiation was a comparably effective choice.

He said that I should not take too much time to make up my mind; three months would be ok, and gave me a book written by a famous urologist/surgeon Dr. Patrick Walsh - Guide to Surviving Prostate Cancer. That scared me even more, because I learned about things like extracapsular extension, metastisis, and the probability of recurrence, all information based on statistics. There is a thing called a nomagram which you can fill out on line at Sloan Kettering's web site that let's you calculate various probabilities on line.

My next few months were iterative. I read the following books in addition to Dr. Walsh's:
"Prostate Cancer for Dummies" by Dr. Paul Lange, Chair of the Department of Urology at the University of Washington, who is legendary as a practitioner and researcher in this field;"The Prostate Cancer Treatment Book" by Dr. Peter Grimm, who pioneered the practice of radioactive seed insertion; and "You Can Beat Prostate Cancer and You Don't Need Surgery to Do It" by Robert Marckini, a prostate cancer patient who selected proton beam treatment at Loma Linda as his choice.

It took me eight months to make up my mind how I wanted to proceed. During that time I got a second opinion from a pathologist at the University of Washington a major cancer research and treatment center. It was a confirmation of the initial assessment. I recommend doing this because pathologists are looking at cancer cells on slides and they may differ in their judgments. Through friends and acquaintances I was able to meet several people who had been treated by various modalities and hear their stories. They also introduced me to some incredible doctors and I feel very fortunate to have gained access to these people. One was a very sympathetic well known urologist who had surgery for prostate cancer three years prior, and is pre-eminent in the field. He became my doctor and introduced me to a radiation oncologist and a surgeon on his faculty. I was introduced to an oncologist in a different center who has focused on prostate cancer research for twenty years. The cousin of a close friend who is the Chief Scientific Officer of a genetic research company was a great resource. Through him I was able to consult by telephone an expert radiation oncologist and a surgeon who are both heads of university departments and are not only practitioners, but researchers in their fields. I believe that it is a great advantage to be treated at a center of cancer research. Some of these are Mass General/ Dana Farber/Harvard in Boston, Yale Cancer Center/Yale Medical School,Sloan Kettering in NYC,MD Anderson in Houston, University of Washington Medecine/Fred Hutchinson Cancer Research Institute, University of Pennsylvania. Surgery is practiced in all these places, as is conventional photon radiation but proton beam radiation is not available in all centers.

During the eight months, I had a 3D multiparametric MRI which identified the more aggressive tumor; two genetic tests which yielded comparable results, placing me in the high end of intermediate risk(which classifies your probability of recurrence and metastisis). The companies offering these are Prolaris and GenomeDx. There is also a blood test called Oncoblot which confirmed my cancer. It is supposed to pick up any of 26 common cancers, of which I fortunately had no other. Oncoblot is helpful if you are considering putting off a biopsy. MRI's are not always totally accurate. The best time to have one is in combination with a biopsy. The MRI can guide the biopsy to tumors it might otherwise miss. Not a lot of places offer this combination. I regretted not having pursued this alternative, but my ex post facto MRI was still useful.

As the months went by I grew increasingly nervous and was losing sleep. I was reading medical research papers on line; visiting all the university web sites and other web sites that were fountains of information. I watched a robotic surgery on line. The only consolation was that my doctor told me my cancer was not too aggressive ie not really fast growing, although the results of the genetic tests showed I had more risk than I was comfortable with. The oncologist told me I had time to make up my mind: 3 months, six months , a year-he could not tell. The anxiety I suffered came from not being able to identify a treatment that would give me a "cure". They are all imperfect in this regard and come with different side effects and risks. The big problem is that doctors can only provide information based on statistics, and not all doctors are created equal in terms of affecting your outcome. I eliminated the options of laser, HIFU, cryotherapy, cyberknife and seeds for a variety of reasons. Laser is focal, HIFU is used in the UK and has been around for about ten years so there is some long term data about effectiveness and side effects ,which I did not find encouraging. In cryo they freeze your prostate, but simultaneously have to warm the urethra to prevent it from being permanently damaged. There are some risks associated with seeds, the biggest being the practitioner. As with surgery, you have to find somebody who has performed hundreds or more of these. I was told by Dr. Grimm that many doctors have done only a few so there is a risk of mistakes.

So, for me it came down to surgery or radiation. Because there is no certainty and there are no assurances it becomes a highly personal and undirected matter of choice. Surgery scares me . Although I'm otherwise healthy, I do not consider myself to be a particularly robust person.The thought of hospitalization, the risk of complications, the catheter, the lengthy recovery time to become physically active, the thought of having my urethra removed and its stub ends at the bladder and the penis sewn together, the You Tube I watched which showed a lot of cutting and tearing all frightened me. If you select this alternative make sure you seek out a medical center that has low mortality and infection rates, and a surgeon who has an incredible reputation. Radiation came down to two alternatives, the more conventional IMRT (photon beam which conforms to the shape of the gland, minimizing the potential for it to damage the adjacent bladder and rectum as it enters and exits the body); and proton beam which comes in two flavors, conventional and pencil beam. The pencil beam machines are generally available in the more recently constructed centers. Pencil beam, like IMRT directs the radiation more precisely.The highly touted advantage of proton beam is that the protons are delivered to the gland where they deposit all their energy and do not damage tissue on the way in. A major disadvantage is that it is expensive, so some insurance companies will not cover it. Because of the expense, the copay is high. Also prices can very significantly from center to center.

There are not yet long term, big study comparative data comparing IMRT and pencil beam as to effectiveness and long and short term side effects. With respect to proton beam, Loma Linda and the University of Florida,Jacksonville have published what I would call informal studies. Therefore, I relied a lot on anecdotal evidence, such as what you find on this web site. I met and called a lot of people who had faced the same choices recently and years ago. Marckini's book and Proton Bob web site influenced me as did reports on this web site.

Eventually I settled on pencil beam treatment at the University of Washington's Proton Center. It was a very difficult decision and I often second guess myself although I know I should not. With surgery you get an immediate result. The surgeon removes the gland and tells you whether there was any extra capsular extension. The following is cited from a Harvard publication:

"For some men, what they hope will be the end of their prostate cancer story turns out to be just an early chapter: with the radical prostatectomy complete, they head home from the hospital believing they have been cured, only to learn that some cancer may have been left behind. Today, about 10% to 20% of patients who have their prostate surgically removed receive this news.

Performing a prostatectomy requires a delicate balancing act. The surgeon aims to cut out the gland and enough surrounding tissue to completely remove the cancer yet leave enough of the nerves in the surrounding tissue to preserve erectile function. To the naked eye, it can look as if all of the cancer has been removed, but when a pathologist examines tissue samples, cancer cells may be lurking right along the edge of the cut tissue. This means that some cancer cells may have been left behind, in what doctors and pathologists term a positive surgical margin."

According to the tables, I had a 50% chance of extra capsular extension. With pencil beam radiation I was told they go 5mm beyond the gland, whereas with surgery they cut 1 mm beyond the gland; so I figured I had a better chance of "getting it all" and not missing a few cells ; which the doctors tell you will cause the cancer to recur. Pathology after surgery often shows up more aggressive cancer than the biopsy, which might call for supplemental treatment. You don't get this immediate feedback from radiation, after which you may wait for months, even years for your PSA to stabilize. Surgery patients also have to watch their PSA which should stabilize near zero. The anecdotal evidence of minimal lasting side effects from pencil beam also influenced my decision.

I'm starting my third week of radiation at UW. So far no side effects other than a weakened urine flow, which I'm hopeful will not be permanent. I work out every day and go in once a day for radiation.

I'll continue to post any useful information.

UPDATED

June 2016

In week 7 of 9 of proton beam radiation. So far only some urinary side effects which they say should abate within 30 days or so after the course of radiation ends. Energy good throughout treatment other than one day of fatigue.

Paul's e-mail address is: pootrfathr AT aol.com (replace "AT" with "@")


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