Seeking Post-RP Advice for Very High Risk, G9, Low PSA

[DJBUNK]

I had RP in Aug 2019 at 56 years of age. Pre-surgery PSA was 5.3. Pathology showed G9, negative margins, ECE, seminal vesicle invasion and 1 positive lymph node, stage T3bN1. Based on my 3mth PSA of <0.03, my urologist is taking a wait and see approach to follow on treatment. My 6 month follow up is next week. I was lucky and had no incontinence. ED is a present but seems to be recovering well.

I recently saw a radiation oncologist who is adamant that I need treatment now (or within a few weeks). His recommendation is a 6 month ADT treatment soon. Two months into the ADT treatment, he would begin a 7-8 week course of daily IMRT radiation. Because I already had RP, he said he could only administer an approx. 6000 rad (?) dose. He collected a uPSA which came back at 0.019 with testosterone level of 531. He is also recommending an Aximum scan just in case I have a variant that does not produce much PSA.

While I was ok waiting a few months to recover from surgery before moving to any other treatment, I tend to believe my radiation oncologist that I need to do something fairly soon before my PSA begins to rise.

I would appreciate any advice any of you can give me on appropriate course of action from this point. Does my RO have a good plan? After there better treatments available?

Thanks

[Hidden]

I am close to your stage i.e. pT3bN0 and a bit older. Latest studies show no benefit of adjuvant RT compared to early sRT. Instead, one sees a worse prognosis in OS. I follow the wait and see approach taking monthly PSA tests.

[tango65]

These links have data that could help to make a decision. :

sciencedirect.com/science/a...

onlinelibrary.wiley.com/doi...

ro-journal.biomedcentral.co...

europeanurology.com/article...

[DJBUNK in reply to tango65]

Tango65, thanks for the excellent set of articles. These are quite helpful.

[tango65 in reply to DJBUNK]

I do not have clinical experience to recommend what to do. I have the inclination to get the radiation treatment and ADT but before I will get a second opinion with other RO Since you have a low PSA you have time to make a final decision. Consider in doing a Ga 68 PSMA PET/CT instead of the Axumin scan because at those PSA levels the detection rate of the Axumin scan is very low.

Best of luck.!!

[Tall_Allen]

I very much agree with you and your RO. With a positive lymph node (and GS9 and seminal vesicle invasion), your cancer is out of the barn and can spread quickly. PSA doesn't become appreciable until metastases have formed macro-tumors with their own blood supply - those are harder to get rid of.

There are two target areas - the pelvic lymph nodes and the prostate bed. The entire area gets the pelvic LN dose, then the prostate bed only gets a boost dose. I assume the 6000 cGy (=60 Gy) over a 7-week course of treatments is just the dose for the pelvic lymph nodes (which is on the high side, but may have fewer side effects if given across 8-9 weeks). The boost dose of about 12 Gy to the prostate bed should bring the prostate bed total to about 72 Gy.

I would also consider a significantly longer course of ADT in your high-risk case. 2-3 years is appropriate when there are known cancerous pelvic lymph nodes. Read this:

pcnrv.blogspot.com/2017/12/...

I also think an Axumin scan is a good idea - a PSMA scan is even better if you can afford the $2800 at UCLA.

[DJBUNK]

Nalakrats thanks for your insight. Would you consider Ohio State to be one of the CoEs?

[DJBUNK]

Thanks Tall Allen. I was wondering myself about the 6 mth ADT since most of what I have read indicated longer treatment period. It could be that the RO was assuming on behalf of the MO. I'll know more when I speak to the MO.

As for the other scans, the cost is acceptable but I didn't think I qualified based on lack of rising PSA. I've investigated a number of GA-68 trials at various centers but the eligibility criteria for all excluded me because my PSA was either too low or not rising.

[Tall_Allen in reply to DJBUNK]

They may accept you at UCLA based on your positive lymph node -ask them. It is your RO with whom you should discuss this, as it is an adjuvant treatment to the radiation. email him the Touijer link and ask him what he thinks.

BTW- if you want me to see your reply, hit the "reply" button under my response. I usually only look at stuff that lands in my email, and I don't usually read what others write. Luckily, I saw your post.

[DJBUNK in reply to Tall_Allen]

Good advice, thanks. As I posted above to Nalakrats, I now have a 2nd opinion appt set up with Johns Hopkins. You've given me some good material to review in advance of that visit.

Thanks

[Tall_Allen in reply to DJBUNK]

JH isn't really known for their radiation oncology. do you live in Baltimore?

[DJBUNK in reply to Tall_Allen]

No, I live in Ohio. Wasn't really sure where to go next for a 2nd opinion. I chose JHU more because of their overall reputation with PCa than anything else. I'm not even sure if radiation is the best next step. I tried to get into several multidisciplinary PCa clinics but each time was told I don't qualify since my PSA is still undetectable. As TeleGuy noted, I'm in a quandary...hard to get into specialists and tests due to low PSA but facing significant likelihood of recurrence based on risk factors.

Do you have other suggestions?

[Tall_Allen in reply to DJBUNK]

You have a positive lymph node, so I don't think it matters what your PSA is - you know that your cancer is out of the box. I doubt that any experienced RO would disagree.

IMO, Teleguy is incorrect. PSA does increase detection rates in general, but your positive LN puts you in a different category. Did you call UCLA and ask about whether you qualify? Keep in mind, that the only purpose of the PET scan is to check for distant metastases. It is nice to have, but even without it, you still need the SRT.

It isn't the center that's important - it's the experience of the doctors at those centers. Some of the top centers in other fields (like urology or oncology) are light in their radiation oncology expertise (e.g., Johns Hopkins or Mayo). In Ohio, I would talk to Rahul Tendulkar at Cleveland Clinic. If you are closer to Ann Arbor, Daniel Spratt at U Mich would be a good choice.

[DJBUNK in reply to Tall_Allen]

Tall_Allen, a big thanks for the recommendations. In addition to the JHU visit (which they converted to a multidisciplinary team visit), I now also have an upcoming appointment with Dr. Tendulkar as well as a MO (Dr. Shilpa Gupta) at Cleveland Clinic this week. That will give me 3 different RO/MO opinions. In addition, my 6 mth follow-up with my urologist is this week and I plan to ask him in more detail why he thinks waiting is the best approach.

Hopefully with all these visits, I will be much better informed on the recommended treatments, impacts to QoL, and advantages/disadvantages of each. I've done a fair bit of research myself but it will be good to hear the perspectives of the different doctors.

[Tall_Allen in reply to DJBUNK]

This is not something that urologists have any expertise in. I don't much see why you want to get an MO involved. Talking to a variety of specialists may not be in your best interest. As a patient, you have to decide whose advice is worth taking. I do not care for the "team" approach on issues like this. There are doctors with specific knowledge and expertise whose opinion is valuable, others who will only confuse the issue. You may be interested in this survey showing just how misinformed urologists can be about such matters:

pcnrv.blogspot.com/2019/05/...

(Keep in mind as you read it that you are N1, a riskier category than "high risk after prostatectomy" as defined by that survey)

[DJBUNK in reply to Tall_Allen]

At this point, the only urologist involved in my care is the one who performed my surgery. I'm still on follow-up with him for the time being, although might eventually transfer to a local urologist for any needed long term urology issues (which are few at the moment). I even asked the RO what role a urologist played in future treatment. His answer was that the urologist would handle any 'plumbing' issues.

As for the MO, I assumed that is who would be responsible for administering any drug treatments. The original RO is actually the one who referred me to an MO that he works with. The MO at JHU was set up at their recommendation so I just went along with it. I realize too much information can have a paralyzing effect, but I tend to gather more information rather than less and learn all sides of an issue before making a decision.

[Tall_Allen in reply to DJBUNK]

Unfortunately, at meetings with doctors, there isn't time or the ability to take a deep dive into the data. "More info" doesn't mean "better info." I've found that everyone has an opinion, whether qualified or not. I agree that MOs are sometimes useful for ADT plans, although good ROs drive that. MOs are experts at treating people with incurable disease. I agree that Uros are useful for plumbing issues.

[TeleGuy]

I keep starting to respond but I keep erasing what I write. Even though I had very similar disease characteristics at RP in 2015 (except for LN=2 and PSA=0.29 at 6 weeks), I understand that there is a lot of nuance to each case, perspectives change, and your choice needs to be one you can live with.

After my RP, my MO didn't want to treat what he couldn't see. When we found some hot paraaortic nodes at 6 months, we knew that pelvic RT would not have had a chance at a cure. So I think that I dodged the side effects of pelvic RT, and since my PSA was high enough for scans to be reliable, I think it was a good choice for me. Had my other nodes only been pelvic, RT would have been the right choice.

I see you have the quandary that you have a really low PSA, too low for any of the scans to be reliable, and if you wait until they are, you might miss a chance to knock the disease down to nothing and be out of the woods for a long time. But that's a bet based on data that you don't have combined with the first article on tango65's list that suggests that it may be a good idea.

So concur with Nalakrats that a second opinion from a major center would be a good thing.

[tallguy2]

I believe that your RO is correct. And that with that high T-level you should commence ADT immediately.

Now having said this, please know that advanced PCa is a journey, with many stops along the way. Tall_Alan has posted a blog with the likely sequence of events for men like you and me.

[DJBUNK]

Cleveland Clinic was one of my visits prior to surgery. The doctor there seemed well qualified. The office staff was another matter and for that reason, I decided to go elsewhere. The doctor is a major part of the solution, but scheduling, communication, insurance issues, etc all require working with the staff.

Since I posted my message, I've set up an appt with Johns Hopkins, though it is with the DC location, not Baltimore.

Thanks

[Hidden in reply to DJBUNK]

My dr told me if I wanted a second opinion to go to Johns Hopkins. Get the psma pet scan as soon as you hit .5. You may not see much but that is the starting point. That’s if you don’t start the ADT. Sounds like ADT is the consensus to start now. That’s what they did with me. I’m close to your diagnosis.

[Timmer1967]

The plan your RO is proposing is nearly identical to what I have pursued through Mayo. I wish I could report that I received positive results, but it's too early for me to say. I had 34 daily RTs and I am just nearing the end of 6 months on Lupron. I decided to pursue a cure aggressively while I still have a chance for a cure. The treatment and side effects are tolerable. Especially if there's hope for a cure. Best wishes for you regardless what path you choose.

[Concernedwife24]

My husband is looking at similar numbers but his PSA is still there after surgery. We were already thinking of hitting it hard with that report.