Not Good News after prostate biospy when MRI didn't look too bad

It seems my local RO didn't tell me tho whole truth. Doctors can place a temporary physical spacer between the prostate bed and the rectum to protect the rectum during radiation therapy after prostatectomy. However, it requires careful patient evaluation by the RO or a surgeon due to changed in the pelvic anatomy from the prior surgery. So it might be possible for some, the only way to know is evaluation by a knowledgeable surgeon or RO who will think outside the box.

Have my appointment Monday at KUMC, supposed to be center of excellence to get second opinion on what local Topeka KS RO said. KUMC claims Urology Times named them one of only 13 clinical center of excellence in nation. I don’t know, but several other organizations name them as center of excellent for prostate cancer. I sure had poor luck there with Aquablation surgery. Then cancer surgeon lacked communication, but I did like the RO I talked to and she even communicated directly with me and not through staff. Anyway that old news I already posted.
Oncologist in Topeka said I have chance of reoccurrence, but now all is okay and keep track of PSA every 3 months for at least 2 years. Then 1 hour later same building the RO came in the room and didn’t let me get one word in and said, you have cancer in your system because of the <3mm margin and seminal vesicle invasion (SVI) going to need IMTR 40 sessions! However, we can’t do it now, we need to wait until you get over the incontinence issue as radiation will make it worse. We will start in 8 months and mention ADT, but what kind wasn’t said. I tried to talk with him, but he wouldn’t really listen.
Urologist who did my surgery and more that I didn’t want (hernia repair) said watch PSA every 3 months also. He is not much of a communicator, but supposed to be good surgeon.
So that is why I am going back to KUMC and talk with RO I liked and could communicate with. Sure those 2 things are not that good in pathology report (which is posted above). But there are good things and <3mm is not that bad. Topeka RO focused more on SVI. He didn’t seem to care about the other things in report or that my prior PSA was only 4.3. And at that time of seeing him PSA was .06 at 16 weeks from surgery. They did not do a uPSA.
From what I research I don’t need immediate adjuvant radiation, but close active surveillance with early salvage radiation if your PSA rises is the modern standard of care. Also is what my Oncologist said in Topeka. I am 79, walk 3 miles a day and lift weights several times a week, in good shape except for this prostate cancer. If I started adjuvant treatments, I would have a lot of unnecessary side effects. Why not wait and see if PSA gets above .1 or .2? From what I read that in today’s world that is normal. It wasn’t years ago, they would jump into adjuvant treatments right away.
Any thoughts on this and what I should ask the RO Monday?

I did finely get the MRI from that swollen area, but day later and still no report. Don't hurt as much as use to, but still swollen. More concerned about what I mention above which is RO visit for second opinion Monday.

Question:
When I see the RO for second opinion on Monday at KUMC, should I start out conversation by saying I didn't like the RO in Topeka, coming in saying I needed IMTR in 8 months and not listening to me or what Urologist and Oncologist said (which was wait and watch PSA which now is .06). Or should I let her lead the conservation and not be bad mouthing the Topeka RO who seems to be old school (adjuvant treatments immediately because of SVI) ? Well he did say wait 8 months to get incontinence back.
I have seen DR Kane at KUMC before and she seems nice and actually answers messages in MyChart. Says in her profile she is an expert in Genitourinary procedures. I just want to be nice and get answers without being a butt head. Posted pathology earlier above.

@diverjer Complaints about other doctors usually does not advance your case. Get her opinion first and ask questions about risk, etc.

@diverjer
I agree with @jim18. Get a fresh opinion no need to muddy the water with previous information unless he asked what the other recommendations were.

Third in agreement - in my job, when someone comes to me complaining about “the other guy,” my inclination is not to be so helpful and to be more guarded, because my assumption is he’s going to talk crap about me later unless I tell him or do exactly what he wants, his way.

@diverjer I would leave the past in the past, and just move forward.

However, if it were me I would have learned enough about my diagnosis by now to self-advocate, share in the decision-making, and have an in-depth discussion with the doctor about my condition, diagnosis, and desired therapies.

> You mentioned “wait and watch.” Did you mean “watchful waiting” or “active surveillance”? It’s important that you and your doctor are on the same page, have the same understanding, and are using the same terminology.

You both should be engaging in mutual conversation, perhaps with the doctor leading, but with her being fully aware that you’re actively engaged in your treatments.

As for adjuvant vs neoadjuvant treatment, This is a paper titled - “In Prostate Cancer, ADT After RT Better Than Before RT” - that was presented at the American Society for Radiation Oncology (ASTRO) 2020 Annual Meeting —> http://www.medscape.com/viewarticle/940049)

Basically, it’s up to you to find someone who you click with. However, I would be cautious about selecting a medical professional just because they “…seem nice and actually answer messages in MyChart” (unless that’s what’s important to you, in which case that’s as good a reason as any).

@brianjarvis
“watchful waiting” or “active surveillance” Not sure on what the difference, but what I mean is getting PSA tested maybe first year every 3 months, then maybe every 6 months. If it doubles or gets above .1 then really highly consider radiation. If even gets close to .2 start radiation.
I read that article, really interesting and a bit confusing. I have already had surgery, so seems adjuvant therapy is only option. As Neoadjuvant (ADT) treatment given before surgery or radiation therapy to shrink prostate tumors. So maybe confusing is they could have done Neoadjuvant prior to prostate removal? But I think at the stage I am at, if radiation is done they would do ADT prior and during and maybe even after. So since that is after primary treatment (the prostate removal) but before radiation, would that Neoadjuvant which is prior to radiation or adjuvant treatment since given after the primary treatment of prostate removal?

@diverjer “Watchful Waiting” and “Active Surveillance” are two different protocols.

> Watchful Waiting: https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/watchful-waiting-for-prostate-cancer

> Active Surveillance: https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/active-surveillance-for-prostate-cancer

Both are done pre-treatment while monitoring PSA and other markers, until the time is right for active treatment. Once treatment has been done - no matter whether surgery or radiation - active surveillance ends, and then it’s simply of matter of testing PSA from then on.

I missed the point that you had already had surgery - so, that article probably doesn’t apply to you; the article applies to pre-primary radiation.

Both of us - you post-surgery and me post proton-radiation - are simply testing and monitoring our respective PSAs post-treatment for the rest of our lives. (We tested my PSA every 3 months for the first 2 years, then every 4 months for the next 2 years, and now we’re testing every 6 months for the next two years, then……?)

Since I still have a healthy prostate producing PSA at low “new normal” levels (my PSA is currently 0.366), if it approaches 1.0 (with 2.0+nadir being the technical definition of biochemical recurrence post-radiation), I’ll have a number of options - focal therapy (e.g., cryo), brachytherapy, or SBRT (because they’re all very targetable), and possibly re-radiation - depending on the nature of the recurrence.