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Prostate Cancer
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Posted 1/4/2018 3:02 PM (GMT 0)
I guess I am just lucky. Never was before this but I take it. Diagnosed with Gleason 8 with terciary 5 present. Supposedly successful RALP and margins and lymph node negative. about 7 weeks post surgery I had a 9.6 PSA and after scans there were no findings. Put on Lupron every 3 months. PSA dropped to <.01 undetectable after about a year. Now going on 2 1/2 years with no progression. Having been on Lupron for so long I have other side effect issues as everyone knows and also osteopenia\osteoporosis and have know been taken off Lupron for a holiday. That being said, I still feel lucky because the original prognosis from the urologist was pretty bad. I had been pretty down for a while but now realize that people can survive this for a long time. Yes it is a monkey on my back and sometimes feel hopeless but hen again I know people who were diagnosed with other cancers after mine and are no longer with us. I guess sometimes one of the worst side effects is when people were all so concerned about the fact that I have a stage 4 cancer and then feeling guilty to still be in fairly good shape at 2 1/2 years in. People look at me surprised and tell me how good I am doing. Wow, go figure, something is going right. After visiting so many of these support groups online I now can get a good feeling that I will survive a long time with all the new stuff they are coming out with. I guess I am writing this to reach out to all who are just diagnosed and letting them know that there is hope and do not feel like you are coming to the end but actually being allowed time to regroup and enjoy what you got.
Posted 1/4/2018 4:27 PM (GMT 0)
Good news
Posted 1/4/2018 4:55 PM (GMT 0)
Happy for you.

If you have been on Lupron for 2-3 years with undetectables, have you considered taking an HT vacation?

That was my case, I tried a vacay but it recurred. BUT, I had positive everything(except bladder neck) from surgery.
Posted 1/4/2018 9:04 PM (GMT 0)
You never received whole pelvic salvage radiation?
Posted 1/5/2018 3:39 PM (GMT 0)
Tall Allen,
The urologist who did the surgery felt no use to do radiation because the pathology was all negative margins, lymph nodes, etc. Scans were done and nothing showed even though it was a 9.61 PSA. I don't get it either but that is when he said it was best to start the Lupron right a way. He felt it is likely micro-metastatic and would be a lifetime of Lupron etc. Origianl prognosis was very gloomy but now that Lupron works well it could be years to resistance. I fear the results of the side effects from the shot more than the cancer.
Posted 1/5/2018 7:56 PM (GMT 0)
Your very high post-op PSA suggests that it has spread. Your urologist may be right that it is already systemic, but it also may still be in the local area (the prostate bed and pelvic lymph nodes). I suggest you talk to a radiation oncologist about whole pelvic salvage radiation. It probably won't be curative, but it may slow progression.
Posted 1/8/2018 4:42 PM (GMT 0)
Tall Allen,
See that is where I get confused. If pathology showed margins clear and showed no lymph node involvement then why blast the area with radiation blindly. However if it is there one would think a PSA of 9.6 would show up. My fear is that it could be like the doctor said. A bunch of baby tumors which could have been beaten down from 2 1/2 years of ADT just waiting to go crazy. I am sure of one thing, if I don't have a prostate and I don't have any signs in margins or lymph nodes then it is for sure a wait and see what comes in the future. Maybe this Lupron holiday will uncover it.
Posted 1/14/2018 7:53 PM (GMT 0)
scotchityscotch-

the reason to "blast the area with radiation blindly," is because PC usually spreads into the prostate bed first and into the pelvic LNs. Just because your limited LN dissection did not find any does not mean that they aren't there. In fact, most cancerous LNs are not found. you have to treat what you can't see as well as what you can. You and your Uro may be right that the cancer is already systemic, but to keep your options open, I suggest you talk to an RO to get his opinion. he has probably seen a lot of cases like yours. Uros don't know much about radiation - get advice from an expert.
Posted 1/14/2018 8:26 PM (GMT 0)
ADT after prostate surgery can show very good results for high-risk patients. This study tried to compare ADT+Mitoxantrone and "just ADT" for two years starting right after surgery. There were 481 patients in the "just ADT" arm of the study and 87% of these were still alive ten years after surgery. And probably these will not die right after these ten years. Mitoxantrone in the other arm did show no benefit, there was almost the same result.

George
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