We were hoping for a cocky surgeon who would say "No problem. I can do this. You're going to be fine." Instead we got grim looks and no eye contact when we asked about prognosis. Still, this surgeon does a lot of these. We liked him and trusted him. Although we're going for a second opinion with another surgeon tomorrow (Thursday) morning, we think we've found the right guy.
As for what we heard:
On one hand, my highest PSA of 6.4 (most recent was 5.2), is only moderately high in the prostate cancer world. You would expect something in the 20s or more if the cancer had spread. The bad news is at age 43 my PSA should be much lower. So my PSA is higher than it looks. That means the online calculators ("nomograms") that show my odds of 10-year survival at 89% don't really apply. If I make a completely unscientific adjustment of my PSA to a 12, that takes my odds down to 84%. Still not bad, but scary. And I'm not done.
Given the PSA, the surgeon wanted to do a bone scan to see if any cancer is visible in my bones. A positive bone scan would be very bad news. Already stage 4, my cancer would most likely be inoperable and incurable. The bone scan is Friday (the 4th). I probably won't know the results until shortly before surgery.
The next troubling part of my case is the "Peri-Neural Invasion" (PNI). Cancer cells have moved into the nerve areas within the prostate. The nerves come with blood vessels, and that's a route out. It doesn't mean it has spread but it might have. As the doctor said, "We just have to pray we got it in time."
Also troubling is the amount of cancer found in the biopsy core with PNI. The entire needle (100%) was cancer. Fortunately 80% of those cells were the less aggressive Grade 3 cells. The rest were more aggressive Grade 4 cells. It could be the biopsy doc just got lucky and hit a tumor right on. Or it could be there's a big tumor in there that could extend past the prostate "capsule". That would take about 10 points off my odds.
Finally, that scary biopsy core was on the apex, right near the seminal vesicles (kids, ask your parents what those are for). If it's in the seminal vesicles then the cancer is living out of the prostate and free to enter the lymph nodes. In that case take off another 15 points.
As for side effects (which are low on our list of priorities right now) things still look pretty good. Continence is a matter of re-training a muscle. The other side effect depends on the nerves (for function, NOT sensation). The nerves that give the orders to inflate the lifeboats run along the outside of the prostate. They'll have to take out most of the nerves on one side due to that 100% core. But the other side will be mostly intact. It may take months or a year for things to be functioning, but at my age the odds are good, and if you watch T.V. you know there are things that can help. If everything else goes right that will be important. If not it won't really matter.
So the high-stakes events coming up are:
- Second opinion consult with another surgeon Thursday AM. We don't expect better news and we're apprehensive it will be worse. So far everything has been worse.
- Bone scan Friday. That NEEDS to be negative. Odds are good, but the odds have been in my favor all along and the bad news just keeps coming. If it's positive surgery will probably be cancelled.
- Second opinion on my biopsy slides. I'm not even allowing myself to fear a different result.
- Surgery - I want to wake up to good news. We don't want them to see anything scary and we want them to save as much nerve as possible.
- Post-op pathology report - About a week after the surgery. We want clean margins, no cancer outside the capsule, nothing in the seminal vesicles, and nothing in the lymph nodes.
- Post-op PSA test - About four weeks after surgery. If there's any measurable PSA it suggests there are still prostate cells in me somewhere. And they're obviously not in the prostate. So that would be bad.
- Follow-up PSA tests - Every four months for years.
Bad news at any step could change what happens after, of course.
So now you know what we're hoping for. It's going to be a LONG month or so.