PSA/MRI not too bad, Biopsy not too good. What?? [updated]

@jeff1963
An MRI is not the best way to find cancer spread.

The PSMA pet scan is the industry standard for finding prostate cancer in the body. As long as your PSA is above .5 you should have that test and not another MRI.

@jeffmarc I didn't ask my question correctly.

Sometimes the cancer is so advanced that surgery is not an option.

All of my diagnostic tests (MRI, biopsy) said surgery is an option. What happens on operating table if surgeon finds that the diagnostic tests were wrong and the cancer is so advanced that surgery is not an option?

@jeff1963 I’m not a doctor, this is just my opinion. I don’t think a surgeon can tell while doing a prostatectomy how advanced the cancer is. The pathology afterwards is where lots more information is revealed (e.g. spread into vesicles, bladder neck, margins, pathological Gleason scores, etc.) If lymph nodes are removed they can check those too. My husband’s pre-surgery MRI scan showed it was contained in the gland but a follow-up PSMA showed spread in lymph nodes. This was also found when lymph nodes were examined after the surgery. A follow-up PSMA showed the extent of the lymph node involvement and treatment plan was changed. I believe the best we can do is gather as much information as we can (like you are doing), find the right doctors, and move forward. I wish you well.

@jeff1963
If it has not spread outside the prostate to other organs, they will normally just do the surgery and if it is more extensive they will tell you that margins are not clear, If it has spread wider than they thought it was then they will recommend radiation sooner rather than later. Once they start surgery, they will remove the prostate and any lymph nodes they suspect.

If they are sure it has spread to the lymph nodes they may not want to do surgery and prefer to do radiation because they can treat everything that way. If the Affected lymph nodes are near the prostate they might still go with surgery, But then you may find the margins are not clear as mentioned above.

I’ve never heard of them, not completing the prostatectomy because the cancer had spread more than expected.

Want to share the rest of my journey. Got a 2nd reading of the core samples from another NCI and the pathology board agreed I was 3+3 (and not 3+4).

I took a bit more time, still chose RARP and got an appointment with a location and surgeon that checked all my boxes.

Surgery was Dec 16 at Mayo Jax. Got much comfort from Anesthesiologist, he said he had RARP and is now 6 years cancer free. So glad he shared that with me.

Surgeon first did a stat biopsy and again the reading with 3+3. I guess that helped him determine next steps.

Surgeon was such a great guy, my spouse could not say enough good things about him.

Surgery Report - no spreading anywhere, not seminal vesicles, not lymph nodes, clean margins. Path report said two lesions, neither touched the capsule. So, made it thru both surgery and prostate pathology with good news. Call from Urologist going over reports said "this is best possible outcome".

Hated catheter, but nurse removing it was great at creating a distraction while she removed it. No problems.

Continence is not great right now, but I know the statistics, most men are like me at this stage. I will be patient and am doing my Kegels.

Next step is 3 month PSA. Anything is possible going forward, but the odds are on my side now.

Really appreciate all the great info here on this forum.

@jeff1963, I always appreciate it when people return to update their journeys. Sounds like you had excellent care at Mayo, Jax. @jc76 is a patient there too.

I bet it was reassuring to be told by the Mayo anesthesiologist that he had had the same surgery and is 6 years cancer free and working. Did he share this just as he was putting you under? 😉

How is it going with the Kegels?

@colleenyoung Ha! Maybe not right before he put me under, but it was close. I have thought about that quite a bit (Dr Paterson is his name...one "t").

Kegels, working them hard now 3x each day. Haven't see much progress, so I will not likely return to continence quickly, but there's truth to the old saying "patience is a virtue". The odds are I will be better over time.

Thanks for asking!

@jeffmarc my fusion biopsy came back with 12 out of 14 samples positive. All 3+4 except for one 3+3. Doctor never mentioned the possibility of doing a PET Scan to check for spread. He said I could do surveillance for 6 months, take out the prostate , or radiation. Doing a consult with surgeon next week. Should I ask for a pet scan?

@kennyo
12 out of 14 samples is very high.

I am wondering what’s going on with your doctor that’s a PSMA PET scan is not being ordered. With such extensive cancer in the prostate, it is very possible your cancer has spread outside the prostate.

You don’t mention where your PSA is right now. If you’ve been on ADT and it’s undetectable, then a PET scan doesn’t make sense. If your PSA is above .5, you should have a PET scan right away. A center of excellence with almost definitely have you get one.

If your PSA is undetectable, you should have a CT scan and a bone scan to see if there is spread somewhere else. These are all paid for my insurance. These tests are not as useful as a PSMA pet scan, but they are very good at finding prostate cancer That has spread. You may have a previous CT scan that they can compare it against.

With 11 out of 14 with 3+4 I cannot understand why a doctor would recommend active surveillance. That is just not the correct diagnosis.

You should consider seeing a center of excellence for a second opinion.

@jeffmarc my PSA is 5.7. Asking about the PET Scan when I see the dr on Monday.