My father has just been diagnosed.....

Hi,
I am new here. On July 6th, 2009, my father (step-father, but still my dad), was diagnosed with stage 4, terminal Prostate Cancer. His gleason score was 9, 12 of 12 biopsies were cancerous, PSA 420 and recent bone scans are clear, MRI showed little enlargement in 2 lymph nodes in this pelvic area. The kicker? He's only 46.
We were SHOCKED. He had a completely normal DRE one year ago, and this last January, began having urinary issues....followed by another DRE, which was performed by my husband (who is a PA in Urgent Care). It was abnormal and he was sent back to his primary care physician...did his PSA in March and was 340. Everyone assumed it was cancer that had already metastisized. They did all the bone scans, CT's, etc. and ALL came back clear. His Urologist then assumed it was just an infection and placed him on antibiotics and told him to come back in 3-6 months. His urinary issues worsened and they did a repeat PSA which came back to the 420. He went in for biopsy at the end of June, which at that time the urologist said, it was most likely cancer, but thought to be confined and operable. One week later we went back to hear the diagnosis of Stage 4, TERMINAL. Completely inoperable, nothing they can do besides Lupron shots. Apparently it's SO rare that only 1 other man in the U.S. has been known to have this type of cancer, extremely aggressive and in someone so young. They gave him 18-24 months to live and up to 4 years if he does hormone therapy treatments.

Our family is slowly working through this...it's been an extremely hard and tiring month. I, being the oldest child, have taken on the main burdens along with my husband. Watching my father deal with side effects of the hormones...he's not like this...he's always witty, happy, energetic, talk-a-tive...now he's tired, quiet and moody. My mom is having a hard time, of course...she can't seem to shake it and begin the "fight". I don't know where to go from here...we're in the Seattle area, working with Seattle Cancer Alliance and Dr. Tia Higano (one of the top in the world) and the Fred Hutchison group....nothing more they can do but watch it. He doesn't even qualify for any clinical trials because this cancer is so rare. We've checked into Mayo Clinic, Duke University, MD Anderson...all of them said, "no". We've spoken with Prostate Cancer Support groups but it's frustrating because they are all "older men" with PSA's at max of 100's all with a "slow growing" Cancer.

Is there anyone out there than can offer any advice, or support or anything? My husband and I feel at a loss....like there's nothing left but watching him die over the next several years. Our hearts are heavy.

Nadine