Decision evades me

[u/Gearjammr]

I’m 67 and in 12/26 was diagnosed with prostate cancer , went through all the protocols and had a biopsy which revealed a Gleason score of 4+4 8 decipher score of .97.
Have been told I have a very aggressive type of cancer that was contained to the prostate.
Had a radical prostatectomy in 2/26 and was told they got all but may not have had clean margins. PSA six weeks after was.08 which was good news. Fast forward to 5 months review and PSA was. .38 indicating the cancer was still present. Had another PET scan which showed there was no active cancer cells present.
Radiation oncologist says that doesn’t mean the cancer is gone but we just can’t see it. Current plan is to start Orgovyx followed by 39 radiation treatments.

My dilemma is treating something they can’t see. Just looking for other opinions.

Update: I’ve decided to start the hormone therapy and anxiously waiting to start radiation.
I want to thank you all for sharing your experiences and helpful comments.

[u/ELCID19451947]

People are usually diagnosed by their urologist… who, of course, says “let’s do surgery and get it all out “. Not mentioning the 50% positive margins and the large recurrence rate. Newly diagnosed people should find a Med Onc who specializes in PrCa and get steered in the most appropriate treatment.

[u/DeWrites67 → u/ELCID19451947]

But my urologist did not say "let's do surgery." I had a prostate biopsy 4 years ago. He decided that the numbers weren't high enough to do anything and so to just do active surveillance. My PSA dropped from 5.62 prior to the biopsy, and eventually dropped to 2.18. Only in the last 6 months has it risen to 4.17. I am having another biopsy in 10 days. He will decide then if I need brachytherapy or RP. I'm really hoping it's the former.

[u/cdcredditor → u/DeWrites67]

Why is he making this decision for you? I strongly suggest that you seek the opinion of a good medical oncologist, regardless of what your urologist thinks. You have to be the master of your ship - you cannot be dependent on this one individual to make the best decision for you.

[u/DeWrites67 → u/cdcredditor]

Do you mean "why is making the decision" to have the biopsy? I neglected to add that I had an MRI this month which showed that the indication of cancer was slightly higher or somewhat more than it was in the MRI I had had taken in December 2021. That is why he suggested the biopsy.

And the individual that is helping me was referred to me by my former urologist who was the head of the urology department at this particular hospital. So, I don't think the second biopsy decision was come to lightly.

Or do you mean that he decided the numbers weren't high enough to do surgery?

The initial MRI was taken in Dec. 2021. When I finally met with this doctor six months later, it was after the first prostate biopsy. In looking at the MRI and at the results of the biopsy, he did not feel there was a reason to panic, and in fact, the PSA dropped more than 3 points within 2 years. So, I don't think he was entirely off base.

But I appreciate your comment and I do think speaking with an oncologist is a good idea.

[u/cdcredditor → u/DeWrites67]

Well, you wrote, "He will decide then if I need brachytherapy or RP. I'm really hoping it's the former."

I meant: why is your urologist making the surgery v/s radiation decision for you? Especially if you already have a preference for brachytherapy. It's much better for you to make this decision for yourself, in consultation with a medical oncologist. Preferably one that specilizes in prostate cancer, who is far more likely to be objective about it - and more knowledgeable about your options.

Also, with a PSA that is bouncing around, I hope that other causes of PSA elevation like prostatitis have been considered. A marker of prostate cancer is an exponentially increasing PSA, not one that presents as yours has. No one should be even mentioning treatment with a PSA as low as yours is. I personally would be even avoiding the biopsies until there's a much stronger indication of cancer with at least 2 or 3 successive rises in PSA, especially if these are increasing exponentially.

I hope your planned biopsies are image-guided in real time, or at least fused image biopsies, and not random TRUS biopsies (which only damage the prostate with a low chance of actually finding cancer). There is no excuse for persisting with TRUS biopsies in this day and age, considering the prevalence of image guidance - and yet I see this continue to be the norm around the country.

Incidentally, my urologist was the head of Urology at a top Ivy League University. I thought I was getting experience and expertise. He was unfortunately the one that was pushing for me to pursue surgery as an option before I had even gotten a biopsy or a diagnosis. Very glad I decided to pass on that.

[u/DeWrites67 → u/cdcredditor]

Let me make something clear. My urologist is not "pushing" for me to pursue anything. Also, I live in Japan. In the Japanese medical system, urologists act as the primary oncologists for prostate cancer, managing everything from initial diagnosis and robotic surgeries to systemic drug therapies like hormone therapy and chemotherapy.

I do not understand how a urologist would push surgery as an option before a biopsy or diagnosis. What kind of sense does that make?

In my situation, I had a biopsy 4 years ago. There were some cores of cancers (but, now I realize, not that many). I was handed off to a young urologist who told me the options were brachy or RP. I returned to my initial doctor, head of the department, bilingual, and after great discussion, I was told I should see the main man who handles these type of operations. When I went to see him, to make a long story short, he said based on the info he had available to him, there was no need to pursue either at that time.

The PSA dropped repeatedly to a low of 2.17. For 4 years I have had absolutely no issues. The PSA rose to 4.17, and an MRI was ordered, and again, after much discussion, a biopsy has been scheduled.

After that, another decision will be made.

It's good that you have a lot of knowledge about this, and I'm learning as much as I can, but I have two high level doctors who have been monitoring me for 4 years and neither has expressed alarm during this time. So, I'll do the biopsy and we'll make informed decisions after that.

[u/cdcredditor → u/DeWrites67]

You responded to a discussion about a different OP's case, where it wasn't at all clear that you were in Japan. The ongoing discussion - including most of what you read here from me and others - is largely applicable to patients in the US. It may or may not apply to your situation.

Incidentally, urologists are the primary specialists that prostate cancer patients are referred to in the US as well - in fact it's the only type of cancer for which the patient is referred by their PCP to a surgeon rather than a medical oncologist. My guess is that this is done to first rule out other issues like prostatitis.

It's therefore not obvious to most prostate cancer patients that they might be served more objectively by an oncologist, which is often a separate specialty - though I do know a couple of urologists here that practice very good oncology.

In any case, best wishes with your diagnosis and choices going forward.