My dad was recently diagnosed with prostate cancer. It has metastasized to two pelvic lymph nodes and a lymph node in his back they initially called “suspicious” because it’s so small if it wasn’t for the PSMA scan it wouldn’t have been picked up at all. He got his first Lupron shot 3 weeks ago and his psa went from 300 to 30 as of last week which seems to be a quick response.
Yesterday he had a phone call with Kaiser radiology to talk about next steps. The doctor said he had 3 choices - radiate the prostate, radiate the prostate and pelvis or all three-prostate, pelvis and back! The doctor was leaning towards just the prostate and maybe including pelvic lymph nodes if my dad really wanted but obviously you are at risk for more side effects the more radiation you do. He didn’t think my dad should do his back. My dad got a second opinion from ucsf and the doctor recommended aggressive treatment and radiating all three areas. We’re conflicted and even considering a third opinion. It seems like you run the risk of lowering your quality of life although you may extend it if you radiate all three areas. Does anyone have any insight? And if we were to get a third opinion- does anyone know what the best prostate cancer clinics/centers in the US are?
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AppleTree43
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This is the Dad: Prostate suv max19. Regional nodes: External iliac 9mm SUV 23 expression 3, Obturator 5mm SUV 3 expression 1, Presacral 10mm SUV 10 expression 2, other presigmoid 4mm SUV 4 expression 1. Distant nodes: Retroperitoneal several (Example) 6mm 6 mm right para aortic SUV 3 expression 1
Thanks for all your knowledge regarding this. I have a hard time understanding these trials. If you can help me understand- what is the difference between doing this trial and doing adt+ radiation through Kaiser vs. through this trial? It seems like the treatment is the same but I must be missing something
I always like clinical trials because of the level of care one gets. The only way to get Erleada (apalutamide) is through the trial. Otherwise, he could get abiraterone, which is also very good.
If you’re in the Bay Area like me, the preeminent cancer facility IS UCSF. When I was reading your Dad’s condition, my initial reaction was to radiate everything. Your Dad is probably the strongest he will be. Get rid of the shit. That’s my gut reaction. Please read my bio. I have been dealing with this for a long time.
There’s a great website I use, healthgrades.com. I check out ANY doctor I see since I am guiding my medical decisions. IMHO I don’t think you need a third opinion; if so, I would say Stanford (which is where I go).
If you want the best of the best, you can do an online consult with Mark Scholz,MD. He’s in Marina del Rey, but you can have a consult via Zoom.
I got radiation at UC San Diego. We discussed being as aggressive as safely possible and irradiated my prostate / seminal vesicles, pelvic lymph nodes (entire pelvic region) and my one bone met.
Initially, Kaiser here wanted me to “stick with our standard of care” which was nowhere near as aggressive as what my second opinions from Scripps Clinic and UCSD were suggesting.
if you can’t get in the clinical trial with Kaiser, my recommendations would be to use the aggressive recommendations from UCSF. You need to push Kaiser to get the most optimal care because they won’t offer it routinely.
I had radiation of gland, whole pelvic and up to my para aortic nodes. It was aggressive and shooting for a cure. I knew it was a long shot and I was right. I had reoccurence but not where I was radiated. At least that was the impression from the poor PSMA scan that didn't even note SUVs. That said I am 3 years post radiation and still feeling good. Active and healthy and only relevant issues are from drug SEs which are manageable and same as first 2 years now that I am back on Zytiga.I hope your father does well on whatever he chooses. For me radiation was no problem at all. Though by the 40th appointment it was getting old. I did enjoy riding my bike to the appts and that kept me going.
My diagnosis is almost identical. I was out on an aggressive treatment. I received Lupron first. A month later I received my first series of radiation to my prostate and the identified nodes. My PSA for the past 16 months has gone from 850 to .04 and stayed there. I voted for the aggressive approach. Kaiser will always try to go with the least expensive route.
During the 28 radiation treatments I experienced diarrhea that lasted through half the treatments. I was told this was not the norm. The Lupron I tolerate well. The Zytiga I tolerate fairly well, except for periodic hot flashes and muscle fatigue. Although I don't care for these reactions I remind myself of the alternative. All the best to you.
Remember - Kaiser is 50% insurance company and 50% provider. They are not the best at personalized medicine, and prostate cancer requires personalized medicine. UCSF is great. So is Mark Scholz in Marina del Rey.
Third opinion might be Dr Dr Carl Rossi in San Diego (California Proton) Number one guy in Proton Radiation treatment. I was treated there 5 years ago and doing well.
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