I have had a similar experience to yours, however I had external radiation and also brachytherapy plus Lupron. Also had Gleason 9 and a high PSA at diagnosis. PSA has recently gone up considerably higher than yours and it confused my urologists (had two due to living in two places. A couple of people on this list suggested that I needed a medical oncologist to try to make sense out of the PSA, auxumin (sp) PET/CT scan. My urologist referred me to a local medical oncologist and I was very impressed with his no nonsense approach. We now have a plan that I feel good with. My urologist who is mainly a surgeon did not feel confident to develop such a plan on his own. I respect him even more for making this clear. The oncologist was easy to talk to and we discussed every opinion and option I have gotten from others and he did not take offense at my bombarding him with information and questions. In my case I think a medical oncologist was a very important addition to my health team.
my psa is now at 12.79 which is why i am concerned. still it is the doubling time that indicates the amount of and aggressiveness of the cancer. i would certainly watch your psa and track its acceleration or doubling time but i would probably not rush into Lupron treatment unless you tolerate it well. even with my high psa and fairly fast doubling time, my oncologist thinks i can finish some construction projects and go for a one month vacation before being turned into a slug with lupron. he says that the PC has obviously metastasized and that there is no cure for this but there are treatments and new ones all the time. no reason to rush into anything. was nice to have time to get my new 9 ft player piano assembled. this involved heavy lifting and coordination that would have been difficult the way i respond to Lupron. should be able to enjoy it even on Lupron now that the heavy work is done.
Have you talked with your doctor about using Casodex ? It's a chemotherapy pill that is supposed to block the T-receptors in the cancer cells. This is what I am doing.
Had robotic surgery to remove the prostate April 2017. Numbers never zeroed out. Went back in to take out more lymph nodes. None found. Was told Lupron and radiation. Said no emphatically. Told doctor to think outside of the box. Lupron would surely put me in a wheelchair. Side effects have been minimal and bearable. Still getting around. New job has me traveling all the time.
I would try casodex before starting Lupron. My numbers finally went to non detect. If current doc says it's not standard protocol, then change doctors. You don't want standard. This is about YOU and you are not standard.
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