Newby

Welcome to Healingwell, and the "reluctant brotherhood"


Sounds like it's on the move but still with a good chance for a cure. What have you done so far? First thing you should consider, in my laymans opinion, is send the slides to Johns Hopkins, or Bostwick Labs, for a second opinion on the Gleason, if you haven't already.
It's a very subjective thing to read, and you want a second set of eyes that sends lots of time looking at prostate cells.

There are lots of G9 guys here and very knowledgeable guys, that will chime in soon, so stay tuned.

Welcome to HW.

It's impossible to guess how long before it becomes, "a problem."

The problem really is, when will it become metastatic? at G9 the question is more likely when rather than if. Once the PC leaves the prostate, all chance of "cure" are gone and all you'll have is palliative treatments. To me the risk of developing a met, is a problem that suggestion treatment.

At G9, I wouldn't be messing around, but would be researching my treatment options and hitting hard.

Andrew

Hi Rancher and greetings from another G9. Sorry you have to be here, but hopefully we can be of help. For the record, G9s don't always metastasize--it is a higher possibility, but that's why you should hit them with everything you can. And you can win this battle--we have a lot of G9s here that are successfully fighting the beast. From what we know now, no reason to think that you can't join us. That said, I fully agree with the comments that you want to be aggressive in how you treat this.

A few thoughts to get started:

Do get a second opinion on your biopsy slides as per Pratoman's comments above. It's quick and easy--the newly diagnosed sticky tells you how to do that.

Create a signature for your profile (see mine below) with more info that can allow us to provide you additional guidance.

Start researching your treatment options. Yes, there is surgery, but there are also several types of radiation that can be even more effective for high-risk guys like us. In particular combination therapies can be aggressive enough to provide a cure--even for G9. One possible issue with surgery as a G9 is that more aggressive cancers are more likely to migrate and then surgery is a bit like closing the barn door after the cows got out. That means you need surgery AND radiation, so many high risk guys choose to start with radiation.

Let us know where you live and we might be able to provide suggestions on who to consult with. Unfortunately, it's difficult to do one-stop shopping for treatments. Each practitioner tends to know their own speciality very well. Even with radiation oncologists, someone that practices SBRT (an external beam radiation) won't be an expert on brachytherapy (radiation inserted directly into the prostate).

Good luck to you. And hope we can help you lick this thing!

Rancher, you've got a great, well respected treatment option not far (in a relative sense) from home in Seattle. Others here can give you specifics.

Cryo is kind of a niche treatment, not done a whole lot. Photon/proton are also not practiced in a lot of places. IMO, in a case like yours--apparently localized G9--surgery is an option IF there is a high level of confidence that you're organ confined. From what I understand in this forum, the most common treatment for G9, whether metastisis is confirmed or not is to start with HT (Lupron), followed by radiation, simply because the presence of micromets is assumed, even if it cannot be proven.

My only other suggestion is to make sure you're at a top tier facility and team. This isn't anything to be left to the second string.

You may want to read this:

For very high-risk patients, EBRT + BT is superior to surgery or EBRT only

If you're talking about focal cryo, it is not used for GS9 except within a clinical trial. Very doubtful, imho.

If you meant proton, it would most likely be given as a boost, although some are using it as a monotherapy for high risk. It's not bad, just a lot of expensive treatments, with results (oncological control and toxicity) no better than photon.

Even small amount of GS 9s can become metastatic. I hope you've had a bone scan and CT to check for that.