Hello all, heading back to the battlefield after my latest PSA showed a doubling time of 2 months to 5.4. I was diagnosed in 2015 (Gleason 9) and had RP, 33 sessions of radiation to the pelvic bed, and another surgery in Sept., 2018 to remove a lymph node that lit up after a PSMA scan at UCLA. I am in Canada with lengthy wait times for advanced scanning but am able to travel for same. My game plan is to keep beating the bastard back with ADT, surgery and/or sABR for as long as I can. My question is: what is the best scan available to pick up small amounts of pc in the body, and where can I get it?
Thanks in advance, I am tremendously grateful for the collective knowledge and wisdom that lives in this group, however unfortunate it is that it has had to be collected.
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Flydoggy
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Take the PSMA scan at the same institution you had the one before.
Normally, they will give you a more/better-valued info in respect to your development during the interim period. Some third party will be more restrained towards this, due to infra-professional etiquette. We are living in a word of PC (not prostate cancer but Political Correctness) and rounding rough edges is everywhere.
DCFPyL is the best. It is available at NIH but I've heard there is a long waiting list. Also available in clinical trials at Johns Hopkins and in British Columbia.
We are in Vancouver, British Colombia and haven’t heard of DCFPyl...not even sure what it stands for. Sometimes I feel astoundingly ignorant on this site! Thanks for your response.
DCFPyL is one kind of PSMA PET scan. It appears to be more sensitive at lower PSAs than the Ga-68-PSMA-11 PET. Here's an article that explains the range of options:
Ok, got it. I am on the waiting list for that trial...have been for almost a year...slow going here in BC on that one. Back to UCLA I go. Third time lucky?!
Thank you Allen for making your knowledge available to all of us. As for the F18-DCFPyL scan, I am undergoing it on Monday (1-13) at Stanford Hospital; (I made the appointment two months ago and heard from my doctor that Stanford is no longer giving people the scan.) If there is any information you can share about the scan I would greatly appreciate it. Thank you.
Depending on your budget, overseas (Germany/England to name two) would also be an option for PSMA scan. I'd also like to encourage you to look into Lu177-PSMA/AC225-PSMA treatments and discuss with your MO. Perhaps they should be high on your list. The cost of scan is approx. $2800, and the treatment approx. $9000 each.
Thank you for your input. At this point, I am still only bio-chemically recurrent and have no (discovered) metastasis. Do you feel Lu 177 is an appropriate treatment option at this point? It is on my radar but feedback Ihave received is that it is too soon...that the disease has not advanced enough. Diagnosis was Gleason 9 with an aggressive strain.
Repeating the PSMA PET imaging would be a reasonable path. Ga68 PSMA is more readily available than DCFPyL, and in my own experience with both of these agents, they both perform well at very low PSAs, particularly when the doubling time is rapid. With a PSA of 5.4 either should in the 90% for detection. We help coordinate getting these scans, interpreting them, comparing them to prior studies (PET, bone scans, CT & MRI) and help coordinate an action plan for focal therapy if we find something that is amenable to that. Lead time to getting a PSMA at UCLA at the moment is about 6 weeks.
I thought Dr Kwon’s C11 scan stop Mayo was the top dog. Now according to the article it’s only number 5 in sensitivity. Makes me think I should be doing a different scan now but pretty sure C11 is the only thing they offer at Mayo.
When my recurrent PCa reached slightly over 1.0 three years ago, I began reading everything that I could to find the most sensitive scan available. At that time it appeared to be a toss up between the 68Ga-PSMA-11 and the 18F-PSMA- PET/CT scans. I chose to go down to Melbourne AU for the 68Ga scan which was only $600 US and immediately available. It was $2700 at UCLA so it was a no brainer...the trip and scan was about $1800.
The scan identified five sacral lymph nodes which I had resected robotically in CA. The surgery was a 'piece of cake' and my PSA decreased from 1.3 to 0.54; however, it began to rise again. Seven months later when my PSA rose to 0.71, I started using transdermal estradiol gel (tE2) which has been a wonder hormone for me. My last PSA was 0.003 with little boobs as my ONLY side effect.
Had I known what 'Tall_Allen' told me after the surgery, I would not have decided to have them removed. He believes that the most sensitive scans available can only identify the larger malignant cells (over 2 or 3mm). That said, even though the surgery was successful it didn't get everything which was the reason my PSA continued to rise.
Thanks for your response. I too am Leary about”chopping away” more pieces of myself , but am hopeful there may be a situation where SABR therapy may be applicable. The Estradiol patch has been on my radar for some time, I have heard good things about it. There is supposed to be something you can take that prevents breast tissue enlargement.
Tamoxifen can be taken to help prevent gynecomastia. Tall_Allen suggests using it; however, I have not tried it since there is a possibility that it 'may' interfere with the efficacy of the tE2.
I haven't heard anything about it. Put this out to the group, someone will know. By the way, Diagnosed G9 in 2015 and going strong. Best wishes to your Dad.
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