My friend:G9,Path:svi+,5LN+Any Advice?

Looking for advice for my buddy, what the next steps might be. Will he almost certainly have to start hormones? If so what type? What might he expect? Any advice would be greatly appreciated. I've tried to get him to post on this site but with so much going on for him it has not happened yet, hopefully soon. But any advice I can share with him would be a big help.I do not have all the facts just yet so I realize we may be talking in general, but any direction and words of encouragement I can relay to him will really help. He is such a great guy, I met him in the hospital while we both were recovering from the RALP.

This is what I think I know: Age 60, G9, High volume tumor, Poss ECE, chose Vaccine trial at NIH. Reasons he mentioned to me was he wanted to avoid hormones and radiation at all costs, esp. being a single guy he did not want to have hormones mess with his quality of life, esp. his sex life.

Surgery 12/17/15. Pathology 1/20/16 (I don't know all of it): SVI+ 5 out of 41(or 31?) removed lymph nodes + (very important, I realize it may make huge difference, I do not know if local lymph nodes are positive or others are positive; I did not ask yet, not sure if he knows from the phone call), I assume G9 after path(4+5? don't know).

They want him to get a psa early; in 3 weeks to just get an idea of where he is at ( will he be getting monthly psa in his situation?). He said they MAY want to start hormone treatment at that time, not sure what hormones they would start with (Are there any that affect sex life less than others?). Also not sure if he would be doing another trial at NIH for this further treatment , do they have them for this situation? Are they going to recommend radiation?

Of course there are probably a lot more questions, but any knowledge you can share in this area would be greatly appreciated. If I get more facts I will post them.

Thanks so much, Jim

James, my signature shows my journey so far with maybe much of the same stats your friend has. One option I guess.

What I do recommend is that he makes a decision on what's more important, sex, or living, I chose living!

Cheers, Doug

"chose Vaccine trial at NIH. Reasons he mentioned to me was he wanted to avoid hormones and radiation at all costs, esp. being a single guy he did not want to have hormones mess with his quality of life, esp. his sex life."

Well, if he wanted to avoid all of that in order to spare his sex life and chose RP for that reason, I surely do hope he lands on the extra lucky side of that group(and there is indeed an extra lucky group, may he be solidly in it). And especially since he was a G9 like me, and a high volume one to boot, I doubt his surgeons avoided cutting wide and spared nerves, but hard to say for sure.

We need more info, the path report and post op PSA( but it takes a little while for the PSA to drop to undetectable, can't remember the exact days at the moment. (Anyone know that off hand?) But if he was a high volume G9, it seems unlikely (but possible) that the surgery got it all and either HT or RT or both will be needed.

I am a surgery only G9, waiting to see what my PSA does in March which will be 2 years 1 month. I also had a positive margin and SVI. I think not having had any additional treatment recommended by my docs( neither by my local URO and the department chair at Vanderbilt who he referred me to) puts me very much in the minority. Most other authorities seem to opt for much earlier and even automatic additional treatment in cases like mine, seems to me. But one big indicator will be to see if he goes to undetectable on his PSA within a couple of months. Oh, also what his path report shows about lymph nodes. You say he has SVI + positive nodes? If so, seems like HT is almost certain, and undetectable PSA not real likely. But who knows, wishing him luck on all of that, some do get lucky! Can you get a copy of his path report- and PSA when you get it- and post it here in a signature?

I'm also Gleason 9 with maybe worse pathology than your friend's. There is no way for him to escape ADT and SRT with a pathology like your friend's . I also had RP fearing ADT and RT but I was in denial. Gleason 9 is just too aggressive, and it's already escaped into his SVs as had mine. I recently had second round of ADT and RT to all remaining pelvic lymph nodes since Two were found to be suspicious. Sorry to be the bearer of bad news but it's reality. Delaying therapy is not recommended! There are ways to reduce side effects of ADT. If he wants to know have him email me. RT had SEs as well but what choice does he have? Sex becomes a low priority!

Bob

Jim,
I don't know how helpful this might be, but I did notice your single friend was 60 yrs old. Unless he is searching for love in all the young places, his would be partners are likely post menopausal, and a sex life may be of more importance to him than them (just saying).
He sounds like a good guy, because YOU are trying to get him the best treatment to help him. From most women's perspective, that trumps a roll in the hay any day.
Beth