Know anyone who radiates the prostate for those (me) who are metastatic at Dx.?
My mets are shrinking, and can no longer be visuallized by T99. I know some doctors do treat mets (oligometastatic or oligo progressing). How about if the prostate is the main remaining cancer. I am castrate resistant (biologic progressing) but mets are disappearing (radiologic regressing). I think that the ADT resistant cancer may be mostly in the prostate. So let's treat it. No?
patandemma@martinguguno
Dx stage 4 w/thoracic spine mets with mild spinal cord compression
6 cycles docetaxel and concurrent ADT during which huge drop PSA. Repeat spine MRI showed no cord compression but no other change in size of mets
This was followed by 5 1/2 weeks intensity modulated proton beam therapy to spine mets AND PROSTATE AND (prophylactically) bilateral iliac nodes.
I have 2 oncologists but only one practices prostate oncology exclusively.
He was much more aggressive about my getting radiation therapy and the extent of radiotherapy
My reading in the literature is this is not unusual recommendation among the most up to date prostate (as opposed to non-specialised) oncologists
My radiotherapist was similarly aggressive.
I hope this addresses your question
Martin, I believe the current medonc consensus is that full pelvic girdle IMRT would be a reasonable treatment option for you. At the very least, it should debulk the tumor in the prostate and go after any possible pelvic lymph nodes, since as far as I can tell from your profile you never had either radiation or a prostatectomy. I was Stage IV, G9, with seminal vesicle invasion and positive lymph nodes at diagnosis and received IMRT at MSKCC. Not sure where you live, but I imagine other NCCN hospitals would also agree to radiation.
Good luck!
I was diagnosed 4 1/2 years ago with metastatic PCa. Neither surgery nor conventional radiation was recommended by Dr. Charles "Snuffy" Myers. Cancer became resistant to all drugs and after C-11 Acetate PET/CT scan revealed that prostate gland was again active, Dr. Myers recommended proton beam radiation. I have just completed treatment #24 of 44 at the Hampton University Proton Therapy Institute, where they are radiating both the gland and some lymph nodes mets. The key for me was the C-11 Acetate scan with Dr. Almeida, because it gives the radiation team the targets. Best wishes!
Yes I agree that good imaging is important if you hope to kill the metastatic sites. It seems obvious, beyond obvious, but many doctors dont seem to want to do it. They have given up, I suppose.
Well, there ARE some specific reasons local RT is not warranted. Three top-level oncologists of various specialties at two nationally ranked cancer centers concurred that the layout of my bladder, rectum, prostate bed, and lymph field render salvage radiation not only useless but harmful. A simple CT scan showed the problem.
"Is that because half my colon was removed?"
"That complicates it even further, but the problem is not rare."
(Thank GOD I ignored widespread, strong, high-level insistence to get salvage radiation. I got as far as the pre-radiation tatoos before I wised up.)
Glad to see that in at least some cases then, it is encouraged.
I thought it was due to cost and insurance that better scans aren't getting done. Is there any movement towards it? My dad was a lot XT scan but not pet scan and that's a big difference guess you need to push for what you want and wrap them in their own red tape.
Not sure what the procedure is to get the scans. I have written to Mayo/Minnesota and they declined, but one can always try again. The UCSF has a PCMA scan that they are accepting requests for. Their opening are probably in March or so, but it needs to be ordered by a doctor. Although you could ask to be seen by a doctor there I imagine.
I believe that these are covered by Medicare, and by many private insurance plans.
mARTIN: one reason oncologists/hospitals may not recommend certain scans may be that they AIN'T GOT THEM THERE! That means no income but it also may mean that docs practicing there are simply not familiar/comfortable with less common scans.
No ya have to travel to get some of these. And they come with a report I am sure, because they are different, and it takes someone who is familiar with the scan to say what the spots and blotches mean.
Yes, there is the issue of cash flow and all, but I agree that a lot of cases it is just institutional torpor or lack of interest, or we dont do that.
Still a bummer.
Martin, if anything I've become more cynical in the last few years as my oncologist's group have changed allegiance from local to regional and now to another group that will be associated with Texas hospital, but doesn't exist in NJ yet!
Your words apply to HIFU. Maybe if some of the name institutions like Mayo got behind it, Medicare would code it.
Mayo's/Dr. Kwon's c-11 choline PET/CT scan process is state-of-the-art and is the only such facility in the U.S. He considers whac-a-mole -- that's what he calls it -- to be a fourth treatment modality, along with surgery, radiation, and surveillance. i.e., Find the met and destroy or remove it, thus setting one's PC back a few years.
It's a great concept which beats the BLAZES out of our usual options ... when it indeed identifies up to 2 or 3 discrete, individually treatable spots. But when it finds too many, it's time for systemic tx. When it finds none, we wait a while and look again. I had none at a PSA of 17, several very small and widespread ones at 35 ... too many to treat individually. And those are just two possible scenarios that preclude whac-a-mole.
You made a valid approach. I just phoned his clinic, sent them my records, got an appointment, got scanned, and kept returning until he got a definitive answer. EVERYTHING about it, from my home to Rochester, in the Clinic, lodging, feeding myself, and back home again, could not have been simpler. That place runs like a 35,000-person sewing machine! Without that level of proof, I'd never have been willing to accept ADT or chemo.
15 PET/CT/MRI scans later, my only cost was getting there and back (ya gotta eat anyway) and a place to sleep. There is zero need for transportation in Rochester. You don't even need a coat. In Minnesota. In January. It's all as easy as visiting my local hospital a few miles away; it just takes longer.
I just want to say what a blessing that the Mets are indectable and still without so many conventional options and more coming your way. That is AMAZING. I'M routing for the disappearance of all. With ya my friend xoxo
Martin, I have read a lot of case histories and my advice would be to wait and see how the provenge works out. No way will IMRT cure you with mCRPC and there is a downside. Radiation and chemo in almost all cases kills about 95% of the cancer...so it is selecting for the most aggressive cancer cells and stem cells which survive. These very aggressive cells eventually form a tumor which spreads with a fast DT and is almost always fatal. The new treatments in the pipeline like Check Point Inhibitors are you next best option.
Olaparib for Metastatic Castration-Resistant Prostate Cancer 
$450 for your participation in a new study if you are diagnosed with stage IV/metastatic, castrate-resistant prostate cancer 
FDA approves darolutamide for non-metastatic castration-resistant prostate cancer
FDA Approves First PARP Inhibitor Rucaparib for BRCA-mutated metastatic castration-resistant prostate cancer
PSA Anxiety and Intermittent ADT for Metastatic Prostate Cancer 
