New G9 member

Hi Bill and welcome...connecting the dots, I presume you are Carol's husband from the G9 thread she started. Most of us probably won't have much to add that we didn't say there, but I'm glad that you personally reached out as well. Our goal is to help as much as we can so feel free to reach out.

PS...I do have one thing to add now that I think about it. It's great that you have a supportive spouse that already got the ball rolling here. I also have a wonderful supportive wife and I'm sure you'll find that it will be immensely helpful as you move this journey.

Good luck to you and let us know how we can help.

Bill and Carol,
You've got some good advice on the other thread. There are some great guys and gals here with great advice.
Never give up hope!
Just wanted to offer some support as a fellow G9er.

Welcome, Bill. You'll have more questions as time goes on, for sure. Don't hesitate to ask!

I've added your name to the "illustrious" roster on our 2nd G9 Crew thread (here: www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504). The 5+4 thing is pretty unusual, as we only find 4 or 5 per year that join us with that Gleason score. The point is, as our member SteelGuy told me, is to be willing to go after this with a blow torch and pliers if necessary! It's aggressive, and needs the most aggressive treatment plan.

The main reason for that whole G9 Crew thing is so those of us facing this diagnosis can quickly find others in the same boat, look for some history of such cases, get some encouragement by seeing how well so many are doing, and to find some others to talk to directly.

Do you have staging information yet? That's really important. With what you've said so far, our cases are pretty similar.

I did register at NCCN last night and found a maze of info. Might take some time to find relative info to my individual circumstances.

Hi Bill,
I am a fellow G9'r and, although it needs to be updated, if you look at my signature, you will see that I have a pretty aggressive form of this disease and had 11 of 12 cores comprising up to 90% involvement in each core. My PSA was also quite high so my treatment options were narrowing.

You have a couple of things in your favor. First, while your PSA is high, it is still within the range where it could still be completely encapsulated meaning that it has not escaped the prostate. If that is the case then surgery could potentially cure you. If not, then it may be locally advanced and you may either be looking at some form of radiation therapy, or surgery plus local radiation. Each option has it own risks and benefits and you will want to fully discuss the risks and benefits associated with each option.

If you haven't already, you will want to discuss getting a bone scan and a CT scan. While not conclusive they will help evaluate whether your Pca is locally, regionally, or distantly advanced. Either way, you have plenty of treatment options and there are many guys here that have been doing great for years.

Keep the faith and keep us informed of your progress. Best wishes.

Are you able to get a 3T MRI for staging assessment? There are quite a few types of MRIs, and I think it's important to get this imaging done. You're right where I was with most of your numbers, very very similar. My 3T MRI tipped the balance for me from surgery to radiation. Without the data, I just don't know how you make the surgery/radiation decision. It's so hard at first, with so much coming at you I know. Even with data it's a judgement call.

The "Do surgery first cuz it might work. If not then just zap it." school of thought is attractive I know. However, surgery has very serious risk of very serious life-altering side effects, generally minimized by the surgeons. If it's curative, then it's worth it. If not, and you need radiation anyway, then you also get the radiation side effects. My assessment, along with my urologic oncologist was that even a very aggressive surgery, with wide margins, without quote "luxury things" like nerve sparing, was not likely to be curative for me. I ended up going with radiation and HT as my primary therapy, and have done very well so far. That's just me, though.

The risks, the tolerance of side effects, and on, and on, are all very personal decisions. I'm suggesting that you not get rushed into treatment without enough data to guide you.

Otherwise, it's mostly guesswork for your stage. A DRE isn't very helpful. CT can't see much unless it's quite significant.

Oh yeah, it's definitely a see-saw. The other big problem (especially for me as an engineer) is there simply aren't enough data, there aren't conclusive studies, to determine your best choice.

It's all a big gray sea of uncertainty, and you have to sort of navigate the murky waters by feel (it's almost like, "Use the Force, Luke."). After you gather diagnostic info, talk to docs, talk to others (like here), get a feel for side effects and how others experience them and how you would tolerate them, some treatment plan will start to make sense to you.

Go with that plan when you and your team of docs have a sufficient assessment and some kind of consensus. Once you embark on that plan, don't look back. Remember at the moment of decision you're making the best choice you can with what you know now. After surgery, after radiation, whatever, you may find new information then that would have changed your choice. But you can't. Once you commit to a plan, be aggressive and faithful to it.

It's a wild ride, friend!

Just another G9 here saying welcome and to say if you need anything, don't hesitate to ask.