Letters from Six PC Patients – Fall 2013 Newsletter
(FOR PATIENT CONTACT INFORMATION, PLEASE CALL PAACT AT 616-453-1477)
You asked for input from prostate cancer survivors of twenty years. My experience may be of interest and could convince others that “cancer” is just a word – not a sentence.
In 1991 at age 57, during a routine annual physical my doctor was concerned about a PSA reading of 5.7. A subsequent MRI revealed aggressive tumors in both sides of the prostate gland. I had no previous indication or symptoms such as middle of the night bathroom visits so my immediate reaction was shock/horror.
My G.P referred me to an urologist who gave me a Lupron injection which he said would shrink the tumors and make them easier to remove during surgery which he said would be necessary for me to survive. When I asked him about possible down-side of the radical prostatectomy he warned me that I would be most certainly impotent and incontinent. At that time I had recently married so the shock/horror effect went up two notches!!!
I paid that urologist the $500 for the Lupron injection, wished him a nice day and left in a hurry.
During the next few weeks I spent a lot of time on the phone seeking information from specialists all over the U.S.A.
about prostate cancer in general and the possible treatments available. Each one of these doctors insisted that their
specialty, – be it cryosurgery, freezing the tumors, Palladium seed implants , chemical castration, radical prostatectomy, etc. etc., was the only way to go. I had several conversations with the late and great Lloyd Ney who was enormously helpful and encouraging.
I eventually found a urologist surgeon in St. Petersburg Florida, who advised me that using his nerve sparing technique a radical prostatectomy would not only remove the tumors but there was a good chance that incontinence and impotence might be avoided. At this point I was desperate to do something positive so went ahead with the radical. I just wanted that little suckers out of there!
The surgery went well up to a point. I had no incontinence problems, but aft er three months there was no sign of a return to normal sexual life. We then tried injections directly into the penis, which worked very well, but aft er several months the clinical procedure was so lacking in spontaneity and was causing malformation so that was abandoned.
Finally I accepted the urologist suggestions that a penile implant would be a better solution. This was done almost
two years after my original surgery. The big day finally arrived and both my partner and I were pleased with the results and that has been the case ever since.
My PSA after surgery was 0.01 and has remained at that number since 1991. I test religiously every six months and even though my results are good I always attend the doctor’s office with a slight foreboding.
I have never forgotten the help and advice I received from Lloyd Ney and others at the PAACT, and I try to maintain financial contribution to the funds from time to time. I regularly advise people to be tested as I was and several who
have taken my advice had learned that they have the disease but have been able to take advantage of treatments which were not available to me twenty years ago. I exercise regularly, swim every day and try to keep a healthy diet
To whom it may concern,
On page 18 of the summer issue it listed a request for Survivors of 20+ years. I guess I qualify as I started combating
cancer in 1985, Sarcoma. Then Prostate Cancer in 1992 that has been back 9 times. Thanks to Cryo, Brachytherapy, and 6 treatments of TomoTherapy, I am still here. With a lot of praying also!!!!
October 1985—Node/Tumor removal around left Spermatic cord (benign then malignant by AFIP 2 months later)
April 1986—Left orchiectomy (didn’t get desired margins – Sarcoma)
May 1986—External Beam Radiation
March 1992—Prostate Cancer determined – Biopsy – Gleason Score 3 + 4 = 7
May 1992—Megace started
October 1992—Radical aborted as it has spread out of capsule
December 7, 1992—Megace stopped and Antineoplastons started (Dr. Burzynski– Houston, TX)
January 16, 1995—Cryoablation of prostate as had lost effectiveness to Antineoplastins
May 25, 1995—Stopped Antineoplastins as PSA = 0
March 1999—Brachytherapy as PSA rising
July/September 2005—TomoTherapy of right lymph node as scan showed tumor there and PSA rising
July 5, 2007—Urostomy – Dr. Andrews – Mayo Clinic
April/May 2008—TomoTherapy of right lymph node as C-11 acetate showed tumor there.
December/January 2010—TomoTherapy of left seminal vesicle as biopsy showed tumor there
July/August 2011—TomoTherapy of right lymph node as scan showed tumor back
July/August 2012—TomoTherapy of bone in right hip as P/C-11 acetate showed tumor there
November 2012-January 2013—TomoTherapy of tumor just starting in L-4
November 2012-January 2013—TomoTherapy of two lymph nodes as C-11 showed cancer in both
As you can see, I was a test subject in many treatments, however the most important is TomoTherapy.
If you need any more information, just let me know.
I will hopefully be a 20 year survivor the end of this year.
The last issue of PAACT’s newsletter suggested survivors 20+ years with Prostate Cancer be encouraged to send a note. With a PSA in December 1991 of 50, followed by radical surgery and radiation in January 1992 and a year of Lupron in 2011. I’ll be 86 in December, 23 years with Prostate Cancer. I’m still very active.
In my journey of Prostate Cancer PAACT has played an important role. I praise GOD for all your help and
information, which helped me stand up to my urologist and ask for what I had wanted/learned through PAACT.
My cancer is still under control, diagnosed in 1999.
March 1992—PSA 15.3, positive biopsy, age 70
May 1992—Radical prostatectomy
1992-1996—PSA 0 – 0.15
Late 1996 – Mid 1997 PSA 0.39 – 0.54
1997—Started Casodex 50 mg/day PSA to 0.08
In recent years have tried different dosages of generic Casodex: 0, 25, and 50 mg/day, also 50 mg every other day.
1997-2013 PSA minimum 0.02, PSA max 1.00
Last tested on 6-17-2013 PSA was 0.55, present age 91 ½, visit urologist 2 times a year