My Intro...

[Don1157]

I was applying for life insurance and submitted a blood sample. So got a letter back saying that my PSA was at 42 so I better check that out. So after a visit with a urologist, I was diagnosed with PC with a call from my urologist on Friday December 31, 2008 at 5:30pm on New Year’s Eve! He could have waited until Monday! But anyway, the biopsy was positive for all 12 cores and hurt like hell. It showed positive for PC and had Gleason score of 7 (4 +3). Started with IMRT and Lupron for two years. Side effects were not too bad for either. Glad to stop Lupron though. For 4 years after D/C of Lupron; PSA stayed low, below 1.0. However, the Lupron therapy seems to have made a permanent change in my ECG, so went in for a stress test and found some blockage in my heart. So in essence, two potentially life threatening diseases were found and treated within a 12 month period, by accident, that sucked.

Then about 20 months ago it rose to 2, then 3.4, then 3.7, and then 4.3. Urologist referred to medical oncologist, who ordered an MRI of pelvis and a bone scan, on the same day, not a good idea. Started the MRI, but little did I know that I had pretty bad claustrophobia. They had no provision for administrating Xanax at the place I got them, so I had to stop it. I skipped the MRI and it turned out not to be so crucial because I had a CT for a kidney stone about a month before, and there was nothing shown. But also the bone scan showed a spot on a rib, so it has metastasized, only to one bone, which it could have been worse. So now deciding what to do. Consult with my former radiation oncologist. he said he could treat it,, but it had likely been spread to other places, so the only benefit may be to delay ADT. He was then going to contact the medical oncologist to see which would be the best way to go. I throughly trust these guys. I anticipate the medical oncologist recommending ADT and/or a clinical trial going on for a new drug which interrupts production of testosterone and ADT vs. Lupron and Casodex. Will likely go with the clinical trial. I have insurance, but they do not like to spend money, so may go with the clinical trial and see how it goes. the Lupron and Casodex would probably be recommended anyway. So this is a continuation of my PC journey. Both sounded pretty optimistic for years of life remaining, but it is still scary. Have three grandchildren now and want to see more, and them grow up more. I have a very supportive family, including a wonderful wife, whose denial was shattered with the new development. I have been feeling very drained daily which has interfered with some activities. Heart is fine, so I assume it is from the PC metastasized to my rib. Good luck to everyone on here, you need to discuss anything or want to give me your experience so I can make decisions, feel free to write! Don

[Darryl Partner]

Thanks for sharing. Sometimes it's the accidents that save our lives. In your case, twice. Please post what your doctor suggests, next

[JoelT]

Hi Don,

Welcome to the group. Sadly, with the general loss of routine PSA tests more and more of us will have a similar surprise diagnosis, but like you the cancer will have already had an opportunity to have moved beyond the prostate gland.

In reference to a clinical trial and your insurance, speak with the insurance company to make sure that they are willing to pay for any possible expenses that might result from the trial. You don't want to be surprised. Most insurance companies do require a prior approval of a trial or they will not pay.

Joel

[Don1157 in reply to JoelT]

Thanks Joel. I will be speaking with them soon. We meet with the medical oncologist tomorrow to make the decision on which way to go. I totally agree, without routine PSA's more men will be at risk!