THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
After experiencing some blood in my urine, I was biopsied at age 55 in 11/2012 with a PSA; of 14. Biopsy came back positive in all cores with a Gleason Score of 7. Two days later my Father died and I had to deal with that as well as getting the required scans. CAT scan came back negative but bone scan presumed positive with a hot spot on 2 adjacent ribs. Put on Casodex and Lupron immediately and told that was all that could be done until I became hormone resistant. I asked to see a Medical Oncologist and this was arranged. He told me nothing more could be done. I asked to see a Radiation Oncologist and he told me it was useless to even consider RT. When I said I might like to consider RT, he told me he didn't think he was prepared to even make such a recommendation. These 3 Hawaiian Doctors all felt obliged to give me the "truth" without any ray of hope. According to each one of them, I was receiving the "gold standard of care".
So I fell into a funk for about 5 months. I worked on ensuring that my affairs were in order. I then self referred to MD Anderson in Houston where, on my first visit in July of 2013, I encountered a completely different experience. Scans were repeated and this time the hot spots on the ribs were gone. However, MDA upgraded my Gleason to 7's and 9's. After extensive discussions with an MO and Uro, I was offered LPRP eight weeks later. Meantime I stayed on Casodex and Lupron. RP went fine and I checked out of the hospital into a hotel the day after surgery. By the time I returned to Houston 8 weeks later, I was pretty much healed although ED now total. My PSA; was < .10. Post - op pathology showed negative margins, negative lymph nodes (18 removed), SV+ and a small area of "suspicious cells" slightly outside of margin. After further extensive discussions, I was offered RT and at the beginning of January 2014 started 2 months of RT to the prostate bed. At my follow up in May 2014, my PSA; was still < 0.10. After an extensive consideration of all the SE's I was experiencing, I opted for IADT starting immediately (after 18 months of ADT2).
SE's of greatest concern to me after 18 months ADT2 were:
General Muscular Atrophy (Partially reversed by Weight Training)
Rising BP (Controlled by Medication)
Increasing Cholesterol (controlled by diet and Lipitor)
Increased sugar levels (high normal even with strict diet)
Increased weight especially around torso
Breast enlargement and unilateral breast tenderness
SE's from 2 months IMRT:
Short Term only except some rectal bleeding which continues nearly 7 months after completion
SE's from RP:
Sort Term Incontinence Clearing greater than 95% by end of 3rd month
Complete ED (already pretty complete while on ADT2)
Now checking my PSA; monthly and the first 3 months (6/14, 7/14 and 8/14) have all been < 0.10. Already some improvement in SE's from ADT2. My hope and prayer is that my PSA; will stay this way for a long time without having to go back to Lupron and Casodex. I take the usual supplements, work out with a trainer 3 days a week, cardio 3 days a week and try to eat healthy with little red meat or dairy. And I pray a lot because I have always believed that God will answer our prayers.
If there is a message or meaning in my case, it is that hope always needs to triumph over despair and every cancer patient needs to find Doctors who, in addition to world class competence, understand this most basic need of every human being. I know I am very high risk but working with the Doctors I found at MDA, I plan to live long and triumphantly.
Have been off ADT2 for 5 months. Just got my 5 month PSA; and it is still <0.1. Testosterone seems to be gradually returning and the side effects from 18 months of ADT2 gradually wearing off.
Have now been off HT for nearly 9 months and I am thankful to report that my PSA; is still undetectable as of the end of January, 2015. Still having PSA; tests monthly and definitely feeling better being off the HT. No longer having hot flashes and memory and muscle have improved. Hopefully, my "holiday" will continue for a long time.
It has now been about a year since I have been off ADT2 and I am thankful to report that my PSA is still undetectable. By now, many of the side effects of my 18 months of ADT2 have worn off although still difficult to lose weight. Memory much better and no hot flashes any more. I will continue my monthly PSA tests and hope my holiday will continue for a long time yet. I am thankful to God for my progress.
I have now been off HT for 2 years and 2 months during which time substantially all of my SE's to HT have subsided and disappeared. My most recently my PSA was .1 (7/23/2016) and, while it is no longer undetectable, my MO wants to continue the "holiday" until we see successive increases in my PSA.
Simon's e-mail address is: simon AT martinandmacarthur.com (replace "AT" with "@")
NOTE: Simon has not updated his story for more than 15 months, so you may not receive any response from him.