PSA creeping up at 5 year mark post RP

Hello Everyone,

I hope you are doing well. In a way, I was feeling good yesterday morning as it was the 5-year anniversary of my RP. I had eSRT seven months after RP and my PSA dropped to <0.008. Life was good. A few months later my PSA was 0.01, ugh. It gradually crept up to 0.02 and stayed there over the next year or so. I was still feeling somewhat confident. Then my doc said go to testing my PSA every 6 months. Six months later PSA 0.05, damnit. Long story short, my PSA is really starting to gain momentum. It appeared that the doubling time was about 12 months or a little less during the past 18 months. My 5-year PSA test result from yesterday came back at 0.250 - so it doubled in the last 6 months. As you can imagine, this is really frustrating and a bit frightening. I don't have a medical oncologist yet but that is what I'll be looking into starting today.

I live in Indianapolis and while IU has good docs I don't believe anyone considers it a center of excellence for cancer treatment. So, I was hoping you guys could weigh in on how you would, or are, handling this type of situation. Should I travel to Mayo Clinic, Cleveland Clinic or MD Anderson or just get the best treatment I can here in Indy? I do have a local hospital called Community MD Anderson North which is close to where I live and obviously affiliated with MD Anderson. That said, I imagine they consult with the Houston docs which may be good enough.

I definitely think I need a medical oncologist that specializes in prostate cancer. But how do I find one that tests for my specific cancer's genetic make up, uses a multi-pronged approach with androgen blockade, immunotherapy, and chemotherapy simultaneously. Also, I think I'd prefer a doc that prefers getting Pylarify scans on a regular basis to spot mets as early as possible. Note: This is Dr. Kwon's approach at Mayo Clinic - as discussed in his youtube videos.

Any advice from Team HealingWell would be very much appreciated!

Regards,

IndyGuy

Post Edited (IndyGuy) : 2/16/2024 6:24:21 AM (GMT-8)

Indy, I am also a Hoosier, but now in Georgia.

The Urologic Oncology department at IU Medical Center is excellent and world renowned. Remember, that is the department when led by Dr. Lawrence Einhorn developed the testicular cancer cure that all the others follow as the standard of care. Even Texan Lance Armstrong bypassed MD Anderson to be treated at IU. His medical oncologist was Dr. Craig Nichols.

I encourage you to dig into the specialists at IU before you think you have to go somewhere else.

Go Big Red!

JNF,

Thank you for your replies. I didn't know I was so fortunate to have IU Health nearby to manage the medical oncology part of my future treatments. I will definitely be reviewing their doctors and researching their individual levels of expertise, as well as, their strategies for managing/curing BCR PC. Thank you again for giving me confidence to look more closely at them.

Kind regards,
IndyGuy

Indy, I can't speak to specifics about IU, however the national pool of top MO's is fairly small, they all know each other. So, if you talk to one, and especially if your case is odd or complex, it's almost a sure thing your case will be discussed with other experts.

Certainly give them a call. And, you're not THAT far from either Cleveland or Chicago or Nashville (Vanderbilt). The MDA satellite center near you is also a good resource.

Indy, I don't have specific recommendations for either in Chicago. Cleveland is really only 5 hrs drive or so from downtown Indianapolis as well. (I've made that drive many times).

Mumbo,

Thank you for your advice. I agree with you that getting another PSMA prior to any treatment makes the sense. I could have a hot lymph node in my prostate bed or a single met somewhere else that could be irradiated or excised. I also like Dr. Kwon's strategy and I'm curious if there are docs at IU that subscribe to his approach. I imagine I could be a patient of Dr. Kwon and also have a local MO that works with the Mayo team so that I can get my treatments and scans in Indy. I'm not sure if that's a possibility but I willing to at least inquire about it. Hopefully I can make some decisions in the near future as my doubling time appears to have increased from 12 months to 6 months - not good, I know.

Thanks again for your advice.

IndyGuy

Some might suggest getting a Gallium 68Ga PSMA tracer for your next PET scan. There seems to be some logic that one tracer might find something the other tracer misses. I don’t know enough about the details to be specific but the logic makes sense to me. Just a thought.