Looking for advice...not even sure

Hey guys. I'm, unfortunately I guess, am a new member to this group. I guess I'm reaching out to people who have been through what is the beginning of this journey for me. I guess my situation isn't good and I understand I'm high risk but I really don't know what that truly means. My biggest issue is I don't feel sick and am not in any pain. It's extremely difficult to pee but I'm not telling any of you something you haven't experienced. I guess I'm trying to find some kind of expectation as to what to expect. Also, just how serious is this.

I'm 50. If I don't give all the necessary information I apologize...new to this and all. My PSA is 97. All 12 biopsies were positive for a Gleason score of 4+4. The beginning of this report I have says i'm T2c although I suspect that's since changed. My NCCN risk: Very High risk: based on MR report of EPE and sem ves invasion.

At this point the doctor says he doesn't not recommend a radical prostectomy. I meet with the radiation oncologist on Thursday to discuss radiation and hormone therapy.

Oh, my Partin Tables: 11/40/29/20 I have no idea what those mean.

Thanks guys,
Tom

Hi Tom,

Sorry you are here....glad you found us. I was also high PSA and 12 for 12. I used HDR Brachytherapy, External Beam IMRT (including the pelvic lymph nodes) and ADT for a few years. I am more than six years out and am doing great. No PSA or side effects so the treatment is clearly working. This approach is the best for cancer control and low side effects for us high risk guys. I spoke with three different surgeons and all said no surgery. Too great a chance I would also need radiation.

For information that will help you understand the disease and one of the best treatments see www.cetmc.com. This is the website for Dr. Jeffrey Demanes the father of HDR brachytherapy. He has used it since 1981 and is the head of the department at the UCLA Medical Center.

Tom,

I'm sorry to hear this bad news. Have you had a bone scan/CT yet?

Sorry about your diagnosis and that you have to be here. But the negative bone scan is good news. Let us know what you hear from the RO on Thursday. Like JNF above, I had what some people call the "triple play," which is IMRT, brachytherapy and hormone therapy. I'm also doing well several years later.

Good luck to you and everyone here will do what we can to help.

The lymph nodes. Thats why the surgeon said he wouldn't recommend surgery at this point.

Well the RO said there wasn't enough data on my situation so he left it up to me what to do. I start on Casodex tomorrow and then next week get an injection. I'll stay on that for two months and then start nine weeks of RT. See how things look after that.

I don't know the answers to your questions although seeds did come up. Since it's already spread to the lymph nodes he said it doesn't offer a good option. I'm still a complete novice at all this and funds just don't allow me to go to a Cleveland Clinic or something of that nature. I am fortunate that my dad is a retired urologist so he has been there for all the consultations. He's been retired though for 17 years though so there are limits to what he can help with.

Tom, google "NCCN centers of excellence", this will list the top cancer treatment centers in the US--one of them is bound to be near you. I'll ask the same question--where are you located? Someone on here is sure to know of the experts near you.

Thanks Tom, the casodex is a great start. I assume a shot of Lupron or Eligard will come in a week or so, then the radiation as you had mentioned.

I don't personally know of practitioners in Springfield, but my brother's brother-in-law is in the area and has been treated successfully for about 13 years. He was high risk G9. I would be happy to find out who he has worked with.

I would also research Ohio State and other universities in the area just to see whether additional opinions might be of use for you.

Thanks guys. My dad mentioned the same thing. The cancer center here is only three blocks from work. I have to keep working. Therefore, I'm going to trust that I'm in capable hands. I also just want to get this started. I first saw the urologist in November and received the first diagnosis in February. Ready to get on with it. My first day impression with this Casodex is I don't like it.

Sounds like you're in a similar situation to me. Lack of bone mets is good news. They hit my prostate and lymph nodes with radiation. Then went brachy boost. Also was on ADT for a year. Now it's wait and see.

Tom