When should we follow up with Rad onc?

Posted by mimii24 @mimii24, Jul 13 12:19pm

My 64 year old husband had RALP in September 2024. ,
G- 9 (4+5) positive
+EPE , + cribiform, + margin at left posterior lateral neurovascular bundle and perineural invasion
27 lymph nodes removed - all negative
Post surgical complications due to abscessed lymphoceles bilaterally, resulting in sepsis, diverticulitis, bowel blockage, and subsequent MRSA in his drains. He was operated on and treated at Penn have since followed up with a different oncologist at Fox Chase. His 3 & 6 month PSA
were undetectable. Now 0.05 without the < . . NP said this is still undetectable. I am aware of his unfavorable pathology and we were told 80% chance for reoccurrence. He has never had a PSA. There was no genetic testing or decipher score and no one has told him to follow up with a radiation oncologist for a consult. I feel like his situation is not going to have the best outcome without being as proactive with an obvious aggressive situation. Please advise if I’m overthinking this or time to find a physician who will take him more serious. Thank you.

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mimii24 | @mimii24 | Jul 13 12:24pm

Sorry he has never had a PSMA/PET scan

jeff Marchi | @jeffmarc | Jul 13 1:23pm

The Cribriform and EPE both make it really aggressive. It’d be good to know if it was large or small cribriform. Having both means the cancer is aggressive and linked to a higher risk of adverse outcomes. If it’s large cribrifor, it’s much more aggressive.

Your being aggressive is really a good idea. It’s great to hear the PSA is not rising much yet. It took 3 1/2 years for my PSA to hit .2 after surgery. That’s the point at which they do salvage radiation.

I’m just wondering why with all of these issues and positive margins why they didn’t talk about radiating the area sooner rather than waiting till the PSA rises, which is almost inevitable. Fox Chase has some really good doctors so possibly they didn’t do the radiation because it wasn’t done soon enough, Or they’re worried about more complications due to your post surgical complications history.

Hopefully, your PSA bounces around rather than continuing to rise, that does happen.

mimii24 | @mimii24 | Jul 13 1:45pm

In reply to @mimii24 "Sorry he has never had a PSMA/PET scan" + (show)

Me too. I’ve asked and was told since he’s undetectable at this time it’s not warranted.

jsh327 | @jsh327 | Jul 14 6:49am

I don’t believe that you are over thinking this situation. Gleason 9 + Cribiform + EPE warrants being aggressive.

The fact that his first two PSA tests showed undetectable levels is excellent. The 3rd result is a data point, but no additional treatment actions would occur unless his PSA continues to rise.

Your can read the NCCN guidelines for testament of this type of cancer - his treatment thus far is within guidelines.

You can also read and view at PCRI.org and PCF.org more detailed information about the treatment of Gleason 9 PCa.

While some doctors will want to wait until the PSA reaches the biological recurrence threshold of 0.2, if your husband‘s PSA continues to rise above 0.1, I recommend beginning the discussion with his medical team on next step treatment options, so that your husband has the time to research options, ask questions, and get aligned with his medical team.

With his PSA at 0.05, I recommend continuing to heal, taking care of his body with a good diet and fitness plan. These actions are at least as important as any future treatments and within his control. Also, any future treatment outcomes will benefit from him already being on a healthy PCa diet and a fitness routine.

All of use worry about increases in PSA levels, but it is more important to make the most of every today.

chippydoo | @chippydoo | Jul 14 9:35am

In reply to @mimii24 "Me too. I’ve asked and was told since he’s undetectable at this time it’s not warranted." + (show)

That is a valid response. Salvage radiation and a PSMA isn't usually done until the .2 trigger point. You're in the watch and wait protocol. Took me 2 years post RP to trigger BCR and took my last Orgovyx today. The wait starts all over today.

jeff Marchi | @jeffmarc | Jul 14 11:03am

In reply to @chippydoo "That is a valid response. Salvage radiation and a PSMA isn't usually done until the .2..." + (show)

While that is true if you have negative margins after a prostatectomy, if you have positive margins treatment is going to be different. Waiting for .2 doesn’t make a lot of sense when you know cancer has been left in the area.