Just got Biopsy Results

Sorry that you appear to be the newest member of our club. But hopefully we can help you navigate this.

Your biopsy puts you in the "high-risk" group due to your Gleason 9 cores. That's not where you want to be, but at the same time we have lots of G9 success stories on this site. (Including myself!) With a G9, you will typically have some bone scans to see if there's any spread. At your PSA level, they're unlikely to show anything. Surgery is an option (assuming no spread) and there are several radiation treatments as well. If everything is local, they offer a very good chance of success.

It's too bad you can't get into your urologist for 11 days! My advice for this period is to learn as much as possible about your treatment options (we can certainly help here) and also start to line up docs that you can consult with. Urologists are surgeons by training, so they will talk to you from that perspective. It would also be good to find one or more radiation oncologists for that perspective. If you let us know where you're located, some of the guys here are likely to have some suggested resources for you.

This all probably coming as a shock to you--hang in there, learn what you can and have faith that you can beat this. This site is chock full of success stories. Good luck and I hope we can be of help!

Gleason 9…..not something to be trifled with.

So you will have to take further action.

Its radiation or surgery.

You have a meeting with a urologist. I would also setup a meeting with a radiation oncologist that specializes in PCa.

A newer scan called psma pet might help you make a decision. If the psma pet detects something outside the prostate that would likely push you towards radiation (along with a course of hormone therapy). psma pet is newly approved and provides insights not generally available even 6 months ago.

Its a shock but its beatable!

Kind of surprised the biopsy results showed up on MyChart before talking with doctor. When my PC was reading MRI results, as she was mumbling to herself I heard her say "non-invasive" so I'm hoping it's confined to the prostate. Don't have an IPSS score yet. If by "waterworks", you mean urinating, everything is fine. No getting up in middle of night, no pain, no bleeding. Other than test results, have absolutely no symptoms. I've checked many "lists" of symptoms and I don't have any of them. I've convinced myself this is good news.

JTwig - The 11 day wait with the pathology in hand is actually good. My doctor called me after my biopsy and quickly summarized the results (you have cancer, Gleason 7) and said we would go over details at our meeting in 2 weeks, bring wife. I did not get the actual pathology until then. You can now just study the high risk PCa subset instead of all prostate cancer possibilities which just tends to confuse people with things they are not eligible for or do not apply.

You mentioned the most important thing "Located in Boston area" which is great when having a high risk cancer situation. A couple of the best cancer medical centers are there. Dana-Farber/Harvard Cancer Center, David H. Koch Institute for Integrative Cancer Research at MIT, and Mass General come to mind. At these locations you can get second opinions on your MRI and pathology and also see multiple doctors for treatment recommendations. If I knew I was G9 going in, I would probably would have seen more doctors. Since you now know your status with reasonable accuracy, you can use this time to investigate and setup an appointment at one of the centers for after your urologist meeting to save time which also lets the urologist know you are investigating options.

You will want to keep the process moving along with your high risk situation as you will want to make treatment decisions in the near future and get on with it. Start today with your scheduling and you will find that things line up pretty well. Get copies of your MRI scan report, biopsy pathology report and any other testing as soon as you can and start your binder (or computer folder with PDF copies or both like I did). You will refer to them often.

Thanks Mumbo for the Boston suggestions. Hoping to get in at Dana Farber.
Michael - 58 yoa so I'm guessing surgery would be an option if it's localised.

Also read about partial ablation (not sure if I'm saying it right) but with a G9 might not be an option??

Post Edited (JTwig) : 11/12/2021 11:32:06 AM (GMT-7)

JTwig. I am in Boston as well.
Shoot me an email so I can email some thoughts etc.

Best,

Howard Gold

EDIT: Howard, i removed your email address from your post. If left in, anybody can see your email, including internet browsers" who are not logged in and not members of our forum, so hope you understand, for your own protection. I suggest you add your email to your profile if it is not already there, then Twig can find it by clicking on your screenname to the left of your post.

Post Edited By Moderator (Pratoman) : 11/12/2021 6:50:17 PM (GMT-7)

I am a G9, received my diagnosis a week or so after turning 57, it has been a little over 6 years since. My PSA is now at .30, since I had surgery and then radiation, I am at BCR and go back to Dr. Sartor in a few weeks. You will have to make the decision on your treatment.

My advice to you now, is to have sex as often as you can and enjoy!.

I doubt that partial ablation is in play for your diagnosis. If I were to boil down your options--assuming that the cancer is local--you're looking at:

Surgery--ideally this is curative by itself, but if it isn't there may be salvage radiation as a follow-up.

A combo radiation treatment that includes brachytherapy and external radiation. (This is what I had as a G9.) It's possible that you could have either the brachytherapy or external radiation as a standalone treatment as well, although generally that's not the case with the higher Gleason scores. This is where a urologist likely wouldn't be helpful from a consult perspective since this isn't their area of expertise.

The radiation would be done in conjunction with ADT, in which your testosterone is suppressed. (That could be the case for surgery as well, although I don't always see that as the case here.) ADT isn't a load of fun, but it stops the cancer in its tracks and makes the radiation more effective.

FWIW, trying to get a handle on what to do was the most trying part of the experience. Things *will* get better, but you'll have to hang in there for a while first.

Thanks for all the responses. I’m finding the worst part is “Why aren’t we doing something NOW”. Assuming it hasn’t spread (not certain yet), what if it spreads tomorrow? That might not be rational thinking but that’s what I’m thinking.

If PCa spread that quickly, we would all be in bad shape if still around. PCa grows slowly which is why it is so darn hard to detect and does not cause symptoms until you way down the road.

Nothing needs to be done tomorrow. However, you can not put things off for a long time hoping that it will get better. The problem with that feeling, that we all had, is that you will be inclined to jump at the first treatment offered to you that can be scheduled. That is surgery many times since the urologist is your first point of contact in this journey and has a solution to offer. That may be right for you but you owe it to yourself to fully investigate the options available.

The key is to get your scheduling with the other doctors going so you have a busy schedule over the next month or so and get a crash course in their options and opinions. You will probably will get a CT and bone scan done in the next month also. Then you pick the scheme you like best and get it going.

I totally hear you about the "what if it's spreading while I wait?" I totally sweated that. I remember that I was scared to sneeze since I thought it would blow cancer cells around my body.

But the reality is that you've probably had this cancer for a while--it's just now that you found out about it. In my case, I had a negative biopsy in 2007 before having my positive biopsy in 2012. I think it's likely I had cancer in 2007, but the biopsy just missed it. So there's a good chance I had PCa for five years before I even knew it.

In terms of my personal timing as a G9, I was diagnosed in September and started ADT in November--so two months from diagnosis until treatment began. It seemed like a long time, so I totally get your concern. But now that I'm on the other side, I can say that it worked out pretty well!