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RALP in Colorado Springs

Posted by mc1979 @mc1979, May 17 7:24pm

Anyone have experience with UC health Urologists. Gleason 8 PSA 4.5 PET PSMA and bone scan shows no spread. 6 of 13 cores had cancer, only one with 4+4, one with 3+3, and 2 each 4+3 and 3+4. Supposed to have RALP next month here in Colorado Springs. My surgeon says he has been doing the procedure since 2006 both here and in Michigan and before that had experience with open surgeries.

Question is, can I be comfortable with this? I’m very scared of the surgery and side effects. Have considered Proton, but two RO here have said that even with proton two years of ADT will be required.

Everything I have read about ADT says it is not fun.

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florida11 | @florida11 | May 18 7:17am

I'm sorry to hear about the diagnosis. I was in a similar place about 6 years ago - Gleason 4+3=7 with no signs of spreading. I used a local oncologist practice in Denver for the diagnosis. But I went to Dr. Catalona at North Western for surgery as I wanted the best I could find. Ten months later my PSA started to rise, so my Denver urologist recommended immediate radiation to the prostate bed. This is where I wish I had gone to Mayo instead, as they would have likely waited to radiate until a specific location showed up on a scan. After the radiation and 24 months of ADT, my PSA started to rise again. My local urologist told me to expect 5-10 years of remaining life and to be on ADT for all of it. This is when I stopped seeing him, as his practice seemed behind the curve for new research and treatments.

After watching his videos about potential cures at aggressive stages, I went to see Dr. Kwon at Mayo. I lived in Rochester for 3 weeks for daily radiation to a lymph node, went on ADT for 18 months, and just had my last shot with fingers crossed. We are hoping for a cure or at least to kick the can down the road.

This is a long winded way of saying that when I stopped seeing the local urology firm, and went to Mayo, I also began seeing Dr. Lam at UC Health once per quarter for lab work, consultations, and injections. I think highly of UC Health and their care levels and they have a great reputation. However, if I could do it all over again, I likely would have gone to Mayo for the treatments and used UC Health as my local caregiver. I want to make sure I go to the very best for every treatment along the way.

If you choose surgery, which I chose because the salvage treatment options seemed better and my cancer was aggressive, obviously go for nerve sparing. I looked at proton first, and chose not to go this route because of the 2 years of ADT and perhaps fewer treatment options if it failed. People on ADT have differing effects. I have been able to manage well through diet and exercise (I think this is why). Thinking back it was a horrifying time. But in hindsight, I appreciate and enjoy life more now than pre-diagnosis. I wish you the best of luck!

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