Stage IV first day Questions

Radical Prostatectomy last week. Pathology report today confirmed cancer 13 of 21 lymph nodes, outside prostate, in seminal vesicle's, 30mm's from kissing edge, lymph vascular invasion. We are Gleason 9 now state IV. Doc has highly recommended we wait 30 days for new PSA test before starting any treatments. We are not sure we should be jumping on ADT therapy. He said the PSA could come back at zero and he wants clean/clear information to work with. We are scared to wait. Our only plan this week is to schedule 2nd opinions at the 3 big guns. Smilow, Sloan kitteman and Dana Farber. We live in SE CT and would travel anywhere to save a life. Any help would be greatly appreciated.
Thanks
Lou

Welcome to HW.

You've just had surgery and need time to heal from that. A 30 day wait won't matter and gives the body time to heal, and lets any remaining PSA leave the body. Even agressive PC won't get that much worse in 30 days. In fact, an early PSA test might be misleading. Adding ADT now could confuse the test and wouldn't do surgery recovery much good. You're doctor is giving good advice, listen to it.

Getting follow up consultations is good, but RP is major surgery, rest a bit and heal before rushing into action. In any case most follow up treatments wouldn't for a couple of months anyway.

A PSA in a month or so will give you a better idea if and how much PC escaped surgery. Depending where it is, there might be radiation options. Give yourself a little bit of time to get a clearer picture of where things are.

You're not going to make things better by rushing into treatments.

Andrew

The standard of care is 3 months. A test sooner than that might not yield the info you're looking for. It feels to me like you're not trusting your doctor and are rushing into action with little information.

I get that this is scary and you're worried. That's natural - who wouldn't be? It's an emotional hit and the fear has to be high.

But, you have options, time and need to take it a step at a time.

Do let us know what the report says.
Hang in there,
Andrew

Lou,

I was diagnosed in June 2016, surgery in late September 2016, urologist was not very optimistic. I found a high quality Medical Oncologist. Started hormone treatments mid October 2016. Started radiation January 2017. 3 months of radiation. I was Gleason 9 with invasion of Lymph Nodes and Semi-Vessels. Just about 2 years in now. I have a lot of hope. Go climb the mountain... Prayers help too. Good Luck

With cancer in that many pelvic LNs, there is more than what was extracted. The question is, will adjuvant RT still do any good, or is it just a bunch of toxic radiation that won't make any difference?

To help answer that question, I think you should discuss getting the newly approved Axumin scan as soon as it makes sense to get a PSA test - say, 6 weeks from now. (Insurance probably won't approve the Axumin scan without evidence of recurrence - a PSA over 0.2, and they have to wait at least 6 weeks for the residual PSA from the surgery to clear your system, and they have to wait a few months for tissues to heal before adding radiation anyway).

Depending on what the Axumin scan shows, it will suggest two very different approaches - potentially curative, or long-term management of the disease. In the first case, a radiation oncologist will be the key doctor to meet with. In the second case, a medical oncologist will be the key doctor.

(1) If the Axumin scan shows only regional spread (pelvic LNs and prostate bed) and no distant spread, you can start on ADT+ adjuvant RT right away. ADT starts 2 months before the ART. There is some evidence that whole pelvic radiation may still be curative in some cases while the spread is still confined to the pelvic LNs.

/pcnrv.blogspot.com/2017/12/salvage-whole-pelvic-radiation-after.html

The lead author of that study was Karim Touijer at MSK. I recommend you talk to him. MSK has also done some very important work in escalating the radiation dose for salvage radiation, and in widening the treatment field.

(2) If the Axumin scan shows distant spread, you can start on an aggressive hormone therapy regimen of Firmagon + Zytiga + Prednisone. Early use has been found to greatly increase survival. You have your choice of several great medical oncologists in the area. At MSK, Michael Morris is excellent (or Philip Kantoff if he is still taking patients, possibly at Weill Cornell). At Yale, you have Dan Petrylak. At D/F, there's Christopher Sweeney. At Mass General, there's Mathew Smith.William Oh at Mt. Sinai; and Charles Drake at Columbia. You can't go wrong with any of them.

Lou, not the greatest news but as many of the guys have stated you do have options for treatment. I know it is a scary time for you but hang in there. Happy to see you have been able to connect with Denis. What a great guy and perfect to lean on when needed.

Do keep us posted will be looking for you Pathology report when posted.

Cajun Jeff

Hello Lou,

Welcome to the forum. Sorry you find yourself here but glad you found us. Hope we can help.

We have a thread where we keep a roster of our members who are Gleason 9 and 10. It is maintained by Redwing57. Occasionally I will notice a new member who in the Gleason 9-10 risk category and I will use my astonishing moderator superpowers to add the name to Redwing's list. I often put the name in wrong or in the wrong place and Redwing has to go fix it. He's very patient with me. I went to add your name but he has beaten me to it. You might want to check out the list. It's pretty long and most of the guys listed there are doing OK. Some have been on the list for a long time. It makes for reassuring reading for Gleason 9 guys, myself included. Here's a link:

The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

I know what a shock that Gleason 9 surprise can be on a post-op pathology report. I know exactly what it's like. But the shock fades and you deal with it.

I dunno if you are a math type but if you do the math based on the three day half-life of PSA in the bloodstream you'd think that a month would be enough time to wait for that first post-op PSA check but experience has shown that it's not. The theory I like to explain it is that relatively benign prostate tissue is sometimes left behind after surgery but without the blood supply to maintain it. That tissue will linger for a week or two, gradually dying away, but still producing enough PSA to screw up a PSA test result. I know that doesn't make the wait any easier.

The advice that Tall Allen provided sounds really good to me. You might want to take a print out next time you see your surgeon -- maybe when the catheter comes out.

Welcome to the least favorite chapter of the club no one wants to join!

That's difficult news, and it's normal to feel scared. It sounds like you're already thinking about next steps, so that's good. This is one place where you can find empathy and support; you don't have to put on a "brave face" here. Many here have gone through a lot, and can offer hope. Staying solution-focused seems to help.

We have a thread that's run for quite some time for the G9/10 Crew, and I've added you to the roster. It's just a gathering place for those facing similar serious situations, as our interests tend to be on the more advanced therapies, options, studies, and so on. You may find it interesting to read through the many posts, as you'll find most are doing well. [Edit: I see Peter beat me to posting the link.]

Stay with us, ask, vent, celebrate, complain, whatever. We're here for you!

Stage- Welcome to the forum.

Your diagnosis is a tough one. However, one thing I've seen since joining this forum is the number of members with good information to share with others. You will get straight answers here.

There are many high risk patients here who are managing their illness well. No reason why you can't be another.

As others have said, let your body heal from the major surgery. Pay attention to what Tall Allen has to say.

Good luck.

Your Dr. Wagner looks like a good one...Getting second opinions before that next PSA test is a waste of time as the other doctors will have little information to work with...Waiting 6 weeks would be better than waiting 4 weeks....There is little to gain by rushing into treatment before you know exactly what you are treating....Take a vacation, do something fun. Turn off the computer...

Hi Lou,
Welcome to the forum but sorry you have to be here. Since it does not seem like you have had any treatment other than surgery, I think waiting 30 days is a smart idea. I say this because if there is cancer left over it will still be producing PSA and then you can decide on a course of action. If there is little to no PSA then it is likely that most of the cancer was removed. You will likely need additional treatment but at this point it is too early to tell what that treatment will be. ADT and/or chemo are a possibility and most of us tolerate it very well. Best to you and please keep us up to date on your progress.