Fears confirmed

[Willie51]

I posted previously on this long and tortuous journey to ( almost) a diagnosis. Almost because my concierge PCP gave me a heads up on the biopsy report which hasn’t been posted on my digital chart and I haven’t yet heard from my Urologist/ Onocologist. It’s been 4 mos since my annual checkup said my PSA had doubled from 3.2 to about 6.4 in a year.

Just an aside before my real info: I know PC grows very slow and I’ve been told that’s even true of some of the most aggressive(?), but it seems almost irresponsible for me to have received what seems like a very disastrous diagnosis. …with very good doctors in a major medical hub (San Diego). ???

What I know so far: it is a malignant tumor in the prostate; Gleason is either 5+4 or 4+5 (sorry was in my car when he called); cancer mostly on the main target (tumor I assume) and a small bit somewhere else in the prostate; so far no indication it’s spread but I’m not sure how real that is or what they do next to check (MRI said there was no indication the nearby lymph nodes were affected). I believe my URO/ONO or his office will call me soon and I will learn more.

I’ve spent the past few months reading to prepare for this moment hoping it wouldn’t come. I understand much of the general criteria for diagnosis and something about treatment options. I believe either a 4+5 or 5+4 are both the highest risk group but I know there are other factors. Last time I was checked my PSA was still below 9.

I could really use some good advice now as I proceed to learn more. I have an appt with my URO/ONO but not until 3/14. How bad is what I know so far? What are the key questions to ask? What to look out for? How much is there now ? If there’s one thing I’ve learned on here is not to rush but I’ve never been sure if it applies to the worse cases? What I’ve read seems to say that this would/could require radiation+ hormone therapy or surgery?

So….any advice will be appreciated. I will update as I get more info. Thanks so much.

I

[Klew11]

ask for genetic testing be done to know what are the odds of it being a higher risk. Make sure your Dr gets it okd by your insurance company and indicate it is required. Long road. Stay positive when you can. Lean on friends.

[Tall_Allen]

The next step is to get a bone scan/CT and a PSMA PET/CT. The purpose is to rule out distant metastases. If ruled out, you have very good odds of being cured. The SOC therapy with the highest curative potential is called brachy boost therapy. It consists of of external beam therapy with a brachytherapy boost to the prostate and a year of hormone therapy.

prostatecancer.news/2017/03...

[Willie51 in reply to Tall_Allen]

Thanks so much. Very helpful. I do have one lingering question. In aggressive prostate cancers, can one still say with confidence “no need to rush”? I have a good friend with Stage IV and has been fighting the battle for 12 years. His is aggressive plus he had an unusually high testosterone level. Early on he decided to go to Cancer Centers of America in Phoenix for radiation treatment which they approved. By the time he got there a month or 5 weeks later they tested him and told him he no longer qualified because the disease had progressed so much he had to come home and go to the next treatment which in his case was surgery. That’s what makes me nervous. ???

[Tall_Allen in reply to Willie51]

Here's what I know:

prostatecancer.news/2016/08...

If you're anxious, start ADT now. It will stop any progression, and you have to start it 2 months before radiation anyway.

[Willie51 in reply to Tall_Allen]

Tall Allen, that article was very helpful.

[Willie51 in reply to Tall_Allen]

thanks again.

[AlvinSD]

I’m also in San Diego. I was diagnosed in 2022 with a Gleason 9 as well. Unfortunately for me, it had already metastasized. However, there is still hope with lots of treatments available and more coming.

In San Diego, we have some outstanding prostate cancer treatment options including UCSD and Scripps. I can recommend both 1000%. With a Gleason 9, you absolutely need to have a good team including both a Medical Oncologist and a Radiation Oncologist as well as a Urologist.

Please feel free to DM me if you have questions or would like to chat.

[Willie51 in reply to AlvinSD]

Thanks so much for your reply. It great to talk to someone in a very similar boat. Is this a DM or how do I get to that?Sometimes I have trouble finding/following the message trains here. Like pulling them up all at once. So, …I’m currently seeing Dr. Konijeti at Scripps Clinic who came highly recommended by both my cardiologist and a good friend who is a patient. ( Do you have a better recommendation? )He seems great but it’s very early with him. My first urologist was sort of a dipshit. I’m definitely a Type A personality, who needs info asap and then proceeds asap to find the best solution. The delays I’ve met along the way are making me crazy. Oddly enough I’m pretty calm so far about this whole mess. Just another problem to solve. I guess the one logical flaw I haven’t understood is the lack of urgency in this aggressive cancer (everyone says take your time!) It makes sense that at some specific point the cancer can escape the prostate to other points. I don’t think anyone can say when. But then wouldn’t it be URGENT to take care of it ASAP??? To avoid that point? ( I have seen Tall Allen’s helpful info on statistics that say it’s not urgent) Thanks.