Anyone take hormones before RP for very high risk PCa?

Please does anyone have an experience to share?

My husband was told to stop ADT- Firmagon after RP but I am afraid doing so would leave him exposed to his very aggressive cancer. He likely has micrometastisis. He will be doing adjuvant radiation ASAP after RP and will take ADT for that, so why discontinue the hormones in between RP and aRT?

Thank you.

Hi Annie88 - I missed your earlier posts to the forum back in November. Perhaps you've found it already, but we do have a thread for our "G9 Crew", those of us dealing with this version of prostate cancer. There is a roster of our forum members there, and I've added you to it (the list is in 3 sections, G10, G9 5+4, and G9 4+5, listed in each by diagnosis date). There are links, where they could be found, for each persons earliest post.

The Gleason 9 Crew -- Part 2, continued.

Feel free to post on that thread too, so others can keep up with your situation and maybe provide some direct support. That thread, and its predecessor, were created to be a gathering place for those of us dealing with such cases, and the more advanced treatments, combination treatments, that they merit. There is often a lack of information in the literature.

You've already seen this is a good group of guys. Keep on asking questions, and we'll all do our best to help.

To your specific question, I don't have any real answers. ADT is often combined with RT for high risk cases. Not sure about RP.

Those of us with "very high risk" are so few that often there aren't many answers. We seem to be in a shoulder-shrug category in so many studies, with numbers so small we often are lumped in with other lower-risk cases just to make conclusions possible. Sometimes we get a footnote, something like, "While no significant difference was seen for treatment xyz, there was a subgroup of high risk cases that may benefit. Further studies needed.". And, that's about it.

And for the "very high risk" category? That's relatively new, with even smaller numbers. The newer prognostic Grade Group system has a category for G9/10 cases (Grade Group 5), recognizing their risk being greater than the G8 cases. Maybe we'll see some greater emphasis on that in studies going forward.

about all we can do for now is be as aggressive as possible and hope for the best.

Hello Redwing,

I very much appreciate your invitation to join the G9 club. I'm an avid reader of the research (and fortunately have access to most articles).

What you wrote about the paucity of G9s (especially very high risk G9s) is exactly the concern I've had. Unfortunately, it seems treatments and policies have been geared to D'Amico high risk men which really can be quite a stretch from where we are.

Please can you add us to the list? In the future, I'll post questions relevant to those at very high risk to the bottom of the thread. I assume that's how it works?

Thank you once again.

Annie88 said...
Hello Redwing,

I very much appreciate your invitation to join the G9 club. I'm an avid reader of the research (and fortunately have access to most articles).

What you wrote about the paucity of G9s (especially very high risk G9s) is exactly the concern I've had. Unfortunately, it seems treatments and policies have been geared to D'Amico high risk men which really can be quite a stretch from where we are.

Please can you add us to the list? In the future, I'll post questions relevant to those at very high risk to the bottom of the thread. I assume that's how it works?

Thank you once again.

You're on the list (a mixed blessing!). It's probably best if you keep up with your own thread here on the forum, and periodically update the G9 Crew thread with summary posts for general info. That way you can get more direct support here, and leave a trail there for others following later.

The D'Amico high risk assessment grouping has always seemed to be a serious compromise. Saying any T3/4 is equivalent to any PSA > 20 is equivalent to any G8-10 just doesn't seem right. I find it hard to believe "any" marginal T3 is equivalent to a G10, for example. The prognostic Grade Group system even explicitly separates G8 (Grade Group 4) from G9/10 (Grade Group 5) due to significantly different risk and outcomes. It seems the D'Amico criteria lets researchers make conclusions justifying the cost of a study (research is all about the grant $$). I've been told before that those risks are actually supposedly equivalent, but based on the underlying physics I find that hard to accept.

And then, the "very high risk", with multiple factors, is beyond any of that. We're just off the map as far as these researchers go. Just not enough of us to warrant special studies; we're kind of on our own.

Redwing- have you seen this article about extreme risk factors. When you see the range, even among this cohort, your comments are clearly evident.
https://www.ncbi.nlm.nih.gov/pubmed/26781470

Dr. WHO. Waiting 10 weeks for surgery must have been extremely difficult. You are not in the US, are you?

We learned about Firmagon from another G9er and quite strongly requested it. It took weeks for the prescription because the urologist had to have a discussion at the tumour board meeting about it.

It makes sense to me for men at moderate risk to know the effect of the RP in order to decide about aRT or sRT. In my husband's case, RT is a clear next step, regardless of PSA.

Annie-

If he is committed to adjuvant RT ASAP, you should no longer be accepting advice from a urologist (who probably knows little about adjuvant ADT use with ART), you should only be talking to a radiation oncologist at this point. I doubt a radiation oncologist would take him off of ADT.

Husband age 87 , good physical condition , borderline thyroid , irregular heart rhythms but no treatment , works out every day , prostate cancer gleason 8 in two places , bone scan clear . what are your experiences with Lupron ? Husband against hormone therapy due to side affects and especially getting breasts !!

Rita

Dear Annie88;

I live in Michigan. The surgeon I had was one of the best for DaVinci surgeons in the world. Thus there was a backlog do to his workload. In any case, I would have to wait six weeks to heal from the biopsy. They all said waiting another month would not matter. (As I have a rare and agressive Ductal, I never 100% bought into that.)

Actually having a great surgeon is a mixed blessing. He was great. However, he is so busy that it felt like an assembly line.