Well fudge, new member, Gleason 9 (5+4)

I live near Nashville, and my urologist is at Vanderbilt.  That's one of the top-rated centers in the country, as far as I've been able to discern.  I plan to ask for a 2nd opinion on the biopsy slides too, and will inquire about a "recut".  The answer I expect to hear is "That's all fine, but as far as treatment options a swing of 1 or 2 points wouldn't change the plan much.".

Bone scan scheduled for Friday, 3T Diffusion MRI Monday, consult on Wednesday.  So, in a few days I should have a much better assessment of my situation.  I've also asked them for a copy of my pathology report, since I didn't do a real good job asking about the percentages while receiving "the news".  It's a good thing I was sitting down at the time, and continuing to breathe was about the best I could do.  I'm still getting that vertigo feeling every time I think about this, like saying "I'm going for a bone scan".  Makes me a little nauseous every time.  I assume that part will get better with time.

Steel Guy thanks for the thoughts, very constructive.  PeterDisabelard,  great point about personal preference, and the challenge is appreciated; I want to learn all I can from you experienced folks.  I'm rather worried about surgery's side effects (mainly the incontinence risk), but my engineering nature doesn't deal well with uncertainty (as may be evident from my posts here).  Getting that yucky sucker out of there and maybe some of its potentially yucky neighbors, and slicing it all up to learn all it can tell us seems valuable.

It's slowly dawning on me that with a G9 I'm looking at low probability for a "cure" anyway, and probably setting up the best scenario for a lloonngg delay to progression.

RedWing,

Doctors don't like to use the work "cure" with aggressive cancer, that's true. But your odds of achieving a "durable remission" lasting five or more years are actually fairly good with various types of combined therapies.

Since you are worried about the side effects of surgery you should be sure to ask about the location of your cancer. If it is mostly in the "apex" you are likely to have somewhat more problem with incontinence and ED if you choose surgery. The clearances in that part of your anatomy are closer and it's hard to sort out the nerves and the arteries and the cancer even with a robot. Surgeons can do it but men with cancer in the apex have significantly more side effects from surgery.

Hang in there! From another GL9. Get as much information as you can to be able to be your own advocate.

Hello from another G9. You have gotten some excellent advice here and it sounds like you get it. I also have the engineer thinking process. To simplify, if any of the diagnostics indicate the cancer is not contained in the prostate, you don't want the SE's of surgery. But some guys still want it cut out and the benefit of the post op path which gives you a clearer picture. I was one of those guys, plus I had an added benefit of surgery and that is now I can pee like a teenager again. It also reduced the back pain I had been dealing with for 20 years. We are all individuals with different circumstances, so we have to make our on decisions and be our own advocates. I saw 3 surgeons, 2 radiation and 2 oncologist before I made my decision. My experience was very confusing, because every doctor I saw, recommended their own procedure. So you have to be your own advocate and know how to read between the lines to make your own decision. Its not easy.

G9 is serious, but don't be rushed in to making a decision as there are no do overs. With time, that sour gut feeling will go away. And then it will come back. And then it will go away again. And so on. G9 is very treatable and you get to choose how. Good luck.

starr15... Amen!

No, the first report it was kind of incidental.  I had my first physical with a new (to me) GP, and he checked the box for PSA test though I don't know why he did so.  I didn't know anything about it until his office called me and said they were referring me to a urologist for high PSA ("out of range" on the report).  It took some web searching even then to find out what was going on.  Then, the fun began....

My dad had it around the same time but completely independently (we don't even live in the same state), and my father in law too, so I guess I became kind of sensitized to the problem.

My biggest regret, I guess, is the hiatus of 4 years or so I took after we moved before having it checked again.  It seemed that this wasn't going to be a problem based on everything up through 2008 or so. 

Maybe we could have caught this before it got to a G9,  but maybe not.  This seems to have the ability to go from pretty much non-detectable to quite aggressive within a year, according to some things I've read.  Whatever, it is what it is now.

One other note, back in '02 they were saying that a low free PSA was potentially indicative of future high risk PCa even if it couldn't be found yet.  In my case anyway, that proved to be rather correct.  I'm thinking elevated PSA with low fPSA needs routine monitoring, like every 6 months forever, to watch for trends.  I don't know.

Back in '02 they were working on all sorts of new tools, but it seems very little advancement has been made in detection even now.

Redwing,
Sorry to see you here but don't beat yourself up. It seems to me that you did almost everything that you could do. I know that you are rather "anxious" concerning the results of your MRI and bone scan
since they will determine your course of treatment. With your relatively low psa and negative dre I am holding out hope that they will be negative and you will have many more options.
As a professional engineer I am sure that you will determine what the appropriate course of action to follow in your case after determining possible SE's and possibility of "CURE". I thank Steelguy for the updated NCCN guidelines which have changed drastically since 2010 when I made my decision. HDR bracky didn't exist and "seeds" were only recommended for g7 or below; times have changed!
I'm a complete novice and made my decision regarding treatment by spending days in my HMO's physician's library since I'm not computer literate. No one kicked me out! My initial consult was a disaster and lasted less than 10 minutes before I walked out--no, I didn't kill the messenger..the options offered to me were open surgery with nerve removal or hormones since the didn't have radiation at their facility..That's my story and as you can see I elected to go with IMRT and hormones. Considering my age and ego, it made no sense to go with surgery and then radiation; I figured to do it right the first time and so far it has worked..
All the best to you!
Bill

Ok, so the bone scan is done. Pretty clean, reporting only two nonspecific foci of activity, one on Lumbar L5 vertebra and one on right shoulder.

The report says to confirm with plain film or CT. So, apparently another test will be needed to confirm if there is really a "lesion of concern" (which sounds like a great name for a rock band...).

Waiting to do the MRI today too. Woo hoo!

Allrighty then, MRI done too. 3T machine, with contrast agent and the whole works. It was a long session, and it was great they were able to work me into an available slot. The office had made a mistake and scheduled me at the wrong facility, and since it was not what the Dr and I had discussed I pushed and then pushed hard with his receptionist to get a better answer. The physician's assistant realized the error, and we got it rescheduled properly. So, we actually got both scans done in one day!

Less than half an hour later I got a copy of the data on a CD (lots of pictures, in several series), but there isn't an actual review of it available yet. I'm sure these images mean something to trained reviewers, but not much to me. I can see what's there, and things that don't look like I would expect to see, but it's just going to make me nuts trying to look at them. I just wanted to look at them to see how messed up they might be because my biopsy was just a week ago (normally they want several weeks after, but obviously with a G9 case I'm not waiting on anything). To my untrained eye they look like they're not too distorted from that.

I'm not going to upset myself by looking at these until an expert has reviewed them. After all, a Gleason 9 with ECE+ and SV+ isn't a good situation. Throw in possible lymph nodes and the options become very few. I don't want to buy into those issues unless someone very knowledgeable sees them on those images.

Possibly, I'll be able to pick up the review from the medical records office tomorrow. They said the images should be reviewed soon, and so far they've had things finished FAR faster than they promise. I've been really impressed with Vanderbilt's capabilities.

Post Edited (Redwing57) : 4/19/2013 8:45:42 PM (GMT-6)

Upstate Guy: Thanks for the hopeful words. There is so much uncertainty and conflicting information out there, and it's all based on risk percents and so on. Definitive treatment of some kind is definitely in order, and it's good to hear something positive from a G9 situation.

My engineering world demands a worst-case view of every situation to develop required countermeasures.

With this rotten disease, there are so many variables and the worst-case is really a spectrum of undesirable outcomes, it makes selecting a treatment course really challenging! I'm going to have to find a point when there is "enough" information to make a reasonable decision. We'll never have perfect information.

As a fellow G9 I sympathize with you and offer you some hope . . . it's been 6years since my Dxed and I'm still just on HT. Sure, the SEs are a drag but I'm alive and happy. positivity is the key to success in this wicked game, best of luck . . . Q

SteelGuy said...
RedWing ...

There is a flow chart; i'll share it with you as long as you realize that this is the 'standard' treatment. One of my doctors is one of the authors ... and they're much more aggressive about going after a G9 especially when patient is on the younger side.

Ray

Hey Ray...
I'm all about an aggressive response to this! I wanted to follow up on your comment above. I looked through the link and the NCCN flowcharts. Even Walsh's book says those of us in the category don't have much to guide our treatment decisions. There just aren't comparative studies showing long term results for different treatments in high risk cases.

What are you implying about being "much more aggressive" in their response? I'd be pleased to chat via email if it's somehow not ok to post stuff like that on here. (Forum rules get a little fuzzy for me sometimes; I'm not always PC enough.)

And of course for anyone else reading this, I'm really looking for resources for High Risk PCa. Gleason 8-10, including locally advanced possibilities.

redwing,
I posted earlier. You can see my signature, below, for one approach to being "much more aggressive." Good luck in your decision making.
SC

Possible more aggressive moves:
• Independent oncologists can give you more options, are willing to try things outside the guidelines, and have some personal history with seeing how it works.
o Snuffy Myers’ book helped me a lot to get out of the ‘standard’ mindset (though some of his book is outdated)
o Scholz/Lam and others have a lot of good videos on the PCRI website prostate-cancer.org/
• There are drugs that can be used early/off label to better kill the cancer. I was on Zytiga, even though FDA says not until after Lupron fails.
• More than one doctor … keeps everyone on their toes.
• Radiation used aggressively to go after lymph nodes.
• Surgery to go after lymph nodes (Snuffy Myers book talks about this; Southern Comfort had 14 removed!)
• Provenge??
• Dr. Kwon at Mayo specializes in cases that other people can’t solve. He deals mostly with those who have failed standard treatments. He has some neat scans and drugs at his disposal.