I have been reading the postings on this site since I became aware of it a week or so ago. Very helpful both emotionally and informatively. Excuse me if I don't follow proper posting protocols - I will get better.
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:
Hot Flashes
Testicular Atrophy
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)
Cold Sensitivity
Increased weight especially around torso
Breast enlargement and unilateral breast tenderness
Memory Impairment
SE's from 2 months IMRT:
Short Term only except some rectal bleeding which continues nearly 7 months after completion
SE's from RP:
Short 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 have all been < 0.10. 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.
Post Edited (Hawaii3654) : 9/13/2014 2:06:03 PM (GMT-6)