New to the Forum. Looking for some positive..

I don't think this has been brought up yet, but it is important to get the MRI on a 3 T instrument. What is also important is to have the image read by a radiologist with a great deal of experience in deciphering prostate images. I was told by the MRI technician who assisted me that reading these things is a bit of an art.

When my PSA level first started riding and I was referred to a urologist, the uro gave me the option of an mri first before the biopsy. I opted for that, thinking it was less invasive (in case nothing suspicious was found) or would allow more direct targeting during a subsequent biopsy. That’s exactly how it played out, with the MRI locating a suspicious area and the biopsy confirming it. In hindsight, I am kind of surprised that the uro didn’t specifically advocate for the MRI first. Best wishes and hoping for a low stress resolution of your situation.

it's something", seems like a rather cryptic answer, maybe he just had no info, so chose those words, don't overthink it.
And yes, might've been better to get the MRI first, but thats water under the bridge, and its a very good thing that he is thinking ahead in terms of doing the MRI in the event of a negative biopsy result, He's being cautious.

Nothing more to do but wait and see the results. Truly hope its negative and you can move on .

Good luck on the results--one thing to keep in mind is that the majority of prostate biopsies are negative. Hoping those numbers are true on your end.

JPS, sorry for the news. That's not what you or we wanted to hear. If you do have G9 cancer it's not good news but it certainly is treatable. You should inquire with your doc about a second opinion on the biopsy, perhaps from Johns Hopkins. You should also ask about a PSMA pet scan to see if or where the cancer might have spread. He may want to start you on ADT right away to arrest the cancer.

You will want to start to get educated on the subject of higher grade prostate cancer and treatment options. Some will suggest surgery with the hope of getting it all. Some will suggest surgery and adjuvant radiation. Others may suggest radiation only to hit a broader area to begin with and to avoid the possible side effects of both treatments. You certainly will want to consult a radiation oncologist shortly after discussions with your urologist.

Dr. Scholz is a renowned prostate oncologist who has a ton of videos on YouTube. I would suggest you Google those and look for the ones where he talks about treatments for Gleason 9 cancer.

Good luck. Again, sorry for the news. But we have lots of guys here still living great lives who have had diagnoses similar to yours. We will do our best to help you through this.

Jim

P.S. Here is one of Dr. Scholz' videos on Gleason 9 cancer: https://www.youtube.com/watch?v=5al-1mz0i9y

When I was told that I had cancer, it felt like I had been punched in the stomach. It took me a while to get my bearings and the more my plan developed the more grounded I felt. Keep us posted as possible.
Michael

JP, not much I can add to what's already been said, just sorry to hear the news, and it's not the end of the world, even though it may feel that way now. you'll realize that, over time.

just get as educated as you can, and take advice on surgery from a surgeon, radiation from a radiation oncologist, and don't listen to what any of them say when they move out of their lanes.

JPS - After you get all the information and if it indicates a high risk situation as it appears so far, it will be well worth it for you to consider getting a second opinion from a well respected medical center. The NCI-designated Cancer Centers are a good starting point and link should show you what might be close to you.

https://www.cancer.gov/research/infrastructure/cancer-centers/find

There are lots of place with expertise in PCa but the high risk cases demand the most up-to-date diagnosis and treatment schemes for best results. 3T MRI scans, PSMA PET scans, and "expert" biopsy pathology review are not available everywhere as well as the different treatment methods once the full situation is known.

Good luck and try to hang in there. There is no worst time than right now and it will get better. I am a G9'er and still here

Thanks everyone. I feel like I just got dealt a death sentence. Hard to focus on anything right now. Will meet w the doc tomorrow and get all of my information, results, everything. There is a Sloan Kettering facility in White Plains, NY not too far from me. Going to make an appointment with them for 2nd opinion purposes and presumably for any forthcoming procedures.

Still need to get the scans. Hoping those comeback ok and don’t further destroy any hope that I have..

. Just really down right now. The unknown factor about the future is really getting to me.

JPS1 said...
Thanks everyone. I feel like I just got dealt a death sentence. Hard to focus on anything right now....
Still need to get the scans. Hoping those comeback ok and don’t further destroy any hope that I have....Just really down right now. The unknown factor about the future is really getting to me.

Like Michael, I was kind of worried when my PSA jumped up and crushed when I got the phone call with the biopsy results. Sleeping was difficult, GI tract was out of whack, and generally wondering how my retirement plans 1 month into them could get so screwed up so bad. It is normal to feel crushed and hopeless but it will get better.

My meeting with the urologist was a couple of weeks after biopsy, told to bring my wife, and appointment was scheduled at 4;30pm so it could last as long as needed to answer all questions. Once that was over and the followup scans done, I started the uphill climb evaluating treatment options with doctors and felt the calmest I had felt in a long time the morning of surgery when I was actually doing something about it.

After I had been down as low as I thought I could go, I got the expert second opinion results from the surgery pathology which said: Not so fast dude, it is a little worse on second look, not time to relax quite yet. My second round of getting my spirits dampened (polite way of saying freaking out again). This time getting knocked down and getting up again went much faster as I was doing something about it again.

Summary: Took about a year to get over this adventure (99%) once I had a few non detectable PSA's behind me. After I got past this, Covid hit and my retirement plans took another hit. Life goes on and I am just a little older now in my retirement. The old quote "I cried because I had no shoes until I met a man who had no feet." comes to mind. Lot worse things to be going through than prostate cancer so hang in there.

Thanks guys. This is really helping. I’ll be on here often telling my story as it unfolds. Like you all, nothing would make me happier to be one of the guys on the other side of this giving advice like you all do…10-15 years from now.

I’m turning 49 later this month. I have a fiancé of five years (neither of us in a rush to tie the knot lol), a four year old son and two stepdaughters (14 and 18). They are my everything and I don’t plan on leaving them any time soon.

There’s still a lot of unknown. The G9 result really hit me hard. I have waves where I think I’m starting to wrap my head around it..then a few hours or worry and misery. I’m hoping tomorrow will at least provide some further clarity.

Do you guys ever get together on Zoom to chat? I definitely wouldn’t be opposed to that. I’m finding that talking about this with such a supportive group who’ve actually been though this challenge is really helping.

More info to come. Figured I’d start signing off with my real name from now on.

Jim

There was a fellow who was hosting Zoom sessions during the pandemic. His forum name is “subdenis”

https://www.healingwell.com/community/default.aspx?f=35&m=4300585&g=4300851#m4300851

Not sure what happened to that.

Most like to exchange information on forum as it provides info for everyone. Many members have an email address attached to their name (click on name of poster on left side) if you want to start a more private conversation. I have met up with a couple of new guys in my area after getting to know them better via email. Sometimes the back and forth with email goes a little faster and easier to follow up on specific questions vs. group responses.

I don't know if anyone has said this already, but even if so it bears repeating. If at all possible have your partner come to meet with the doctor -- with a notebook. Ask her to take notes. You will probably get more information in this meeting than you can possibly absorb. Having both of you there, and having notes, will make it easier to comprehend and recall what you have been told. A second point I'll add is that after my diagnosis, reading about prostate cancer and learning about different treatment options helped me deal with anxiety. A book I learned a lot from is "The Emperor of all Maladies" by Siddhartha Mukerjee. It does not deal much with prostate cancer, but it is extremely interesting nonetheless. You are beginning what is likely to be a long journey. Get ready!

Post Edited (fiddlecanoe) : 1/12/2024 3:48:46 PM (GMT-8)