Just updated something that wasn't up to date on my profile to avoid confusion - my PSADT has been relatively low in past years....
Perhaps interestingly, I may be on the opposite side of the scale. Have had both a Ga PSMA scan and F18 PSMA scan, and both were negative. I am most recently up from PSA of 4 to 6. My doc believes...
Very good, impatient - let us know how your recovery goes....
Hi there, impatient - I'm patient (or maybe impatient, I never did figure out which). I had Peyronie's along with ED from prostatectomy, and injections weren't a lot of help, similar to what you have...
Trailguy, I am a runner that has regrettably not been able to for some time - just got second lumbar spinal fusion to hopefully be able to get back into it. I am mostly continent - have gotten in the...
Interestingly, for the first time in my adventure (2008), I am using the insurance service where they give you an "advocate" - nurse practitioner to pull several docs together - to share a common...
I have seen 4 urological oncologists here in San Diego. Dr. Carol Salem did my robotic prostatectomy, my insurance stopped their agreement with her practice so I moved on. I have seen Dr. Kosty...
Thanks, guys. Good to hear I might have a bit more time before deciding....
Hello fellow forum mates - I had a lumbar fusion, L5/S1 2002, and got 18 good years out of it (well a little less than that but still hanging in there). Next level up, L4/L5, has been degrading...
I figured, when I got the biopsy before surgery, "at least I'll never have to go through this again after surgery". Then before SRT, they implanted the gold seeds. "It's pretty much just like your...
Thanks, all, for this thread. I am supposed to start either Casodex or Lupron (my enviable choice), and I refuse to start Casodex without avoiding the gynecomastia somehow. My doc suggested that,...
Tom, you never knew what your doc did once you were under :) He never measured me until then (apparently). No change in urine flow. Implant is in a different region of your member....
Al, glad to hear things worked out for you. I recall encouraging you to go for it but you seemed extremely reluctant. My experience is basically identical to yours. Pat, I had the same implant you...
Argent, I don't doubt that I have PCa. The main point of my post is that there are some deliberating about a scan at 0.2 PSA or thereabouts... there is no assurance that they will be able to find the...
My case study / sample of one: Axumin scan, negative. PSA, 1.98, Ga PSMA PET scan, negative, 0% effective at finding my cancer. >$2500 out of pocket. Not planning on ever having another one. That...
mattam / george, slightly off topic but much appreciated - if I can postpone treatment I would prefer to. It sounds like general consensus here is Casodex monotherapy has less SE than Lupron - and of...
After finding nothing with a PSMA scan and a PSA reading of 2.0, and talking to a few oncologists, all agree that I should go on treatment soon or immediately. One is strongly opinionated for Lupron...
Finally got my 68Ga PET/CT scan at UCLA yesterday. Surprised that they found no tumors!! I am still undetectable despite the 1.98 PSA. I guess that is good news, but I feel like my $2600 might have...
Marv, there are quite a few different variants of PCa, and for some PSA is not a good indicator of progression. I would be asking the doc in these cases what the best gauges are for treatment...
Marv, I decided on the Ga PSMA scan at UCLA, scheduled for this month. The 18f scan was getting too hard to orchestrate across the country. I am in SD so the scan is a short train ride up the coast....
Just an update on the trial - Not sure where they manufacture the chemical for injection, but it must be in the breadbasket of the nation - plant was flooded and now the doses are unavailable for a...
Thanks, AK I may go ahead with it then....
They only radiated the prostate bed for me. I am guessing that aside from confirming cancer, they might want to analyze for type as well. That might be of benefit to me, I'm just not that crazy to go...
I have been standing in line to get into this trial, but now and considering against it. It is supposed to be more sensitive than most scans these days, I am at a point that a bone scan and Axumin is...
The pump for me felt weird, felt like a had an animal balloon between my legs, injections worked better for me. However, I talked to another guy that had ED problems after surgery, was getting...
Cajun Jeff, I know you are a ways out from surgery like me... glad to hear you are looking for a change. I decided on my implant 3 or 4 years out (I forget now exactly when), my surgery diary is on...
For an alternative perspective - I had about a 15 degree curvature midway up the shaft, and a penile implant completely addressed the problem for me. This is a surgical means to address the problem,...
I am essentially at the same juncture as you, Cary, and have deliberated for a while. My choice is to do as you described: get a more sensitive scan (Ga68 PSMA if I don't get into the trial for the...
ANB, I will be interested to see how your treatment goes and wishing you well. I have been curious about BAT in late and early cases....
Buddy, I agree with your point of view. We all have a responsibility to be a positive influence to those who would listen to us. Glad to hear Tommy is at least being responsible with himself for one...
Steve, my oncologist is on board with my plan. I plan to find whatever I can via scan and then radiate it, with the intent to avoid HT for a couple of years if the PSA drops. Yes, my doc has asked if...
Tommy Chong uses cannabis as his only prostate cancer treatment... and according to Wikipedia has stepped it up now that he has also been diagnosed with colorectal cancer....
thejam, I can only tell you what I would do if I were in your shoes. The ADT will shrink the tumor, but not completely eliminate it. Eventually, the ADT will cease to work and then the tumor will...
Sorry to hear about your experience. When my PSA rose to 0.9, I had an Axumin scan that still found nothing. I am on the waiting list for a 18F-DCFPyL PET/CT scan, which is supposed to be one of the...
I discussed this therapy with my oncologist and he would not endorse the treatment - but encouraged me to enroll in any clinical trials that are administering the BAT approach. It does seem that the...
If I were half the man my dog thinks I am - I would really be someone....
I am years out from my implant, and I still fully inflate it when I get into the shower more often than not. It is important that the tissue be accustomed to being both inflated and deflated (just as...
Jason, I am another that was diagnosed at a similar age and Gleason score. You've gotten good advice here and I don't have much to add on that - just take your time and know this isn't an urgent...
Thanks for the book referral, Normal - I just ordered it. I will read it - not to fill myself with dread of the inevitable, but to get myself into a more centered, positive attitude toward it. It...
I like this post. 10 years ago when I first discovered I had PCa, I was swimming in high-interest debt and thinking retirement was not likely for a long time. But I was determined that I wanted to...
I think it is important that your surgeon have experience with the procedure. That said, my doc did a lot but only about 1 per month, and he did an excellent job on me (San Diego). You need to be...
Yes, very happy with mine. No more worries about whether you will be able to get it up, no more needles. Have had it for several years and no problems. Jeff...
I am looking at getting it at UCLA. I believe it will cost about $2850. I am waiting until next calendar year when my health spending account is replenished. Getting an Axumin scan in the meantime -...
Just an update on these clinical trials - Allen, the one you referenced that offered a free PSMA scan if you had a recent Axumin scan at UCLA is now closed. They are offering the PSMA scan at the...
I had a similar experience to oldbeek. Similarly got an implant and it fixed my problem. Jeff...
Allen, the trial you referenced regarding the UCLA PSMA scan after an Axumin scan here: /clinicaltrials.gov/ct2/show/NCT03515577 won't work for me, since I have had SRT. I am going to try to see...
Thanks for this. My rad onc recommended that i get a psma scan at ucla. Although I would have to travel, this might save the scan cost. Jeff...
Feech, were you trying to inflate it or have you not tried that yet? Definitely get with the doc to find out his point of view on the pain. I had pain when inflating initially, and I tried sex too...
If you all are still doing this when I retire in 5-6 years, I will have to join. It sounds like a lot of fun. Jeff...
George, when you say "it didn't help much" I take it you still had the side effect of gynecomastia? That study seemed to argue pretty strongly that Tamoxifen did better than radiation. Rust, 2 mo...