My husband Rick and I just got back from a trip to UCLA for a PSMA Scan tonight. We flew there from Denver on Monday, scan on Tuesday and appointment with one of the MOs out there this morning. I wanted to share that the MD who helped my husband said that PSMA Scan was going to get approved by FDA in December, but that it would probably take 6 months for insurance to cover. I don't know if this is true, but I do hope it is and the scan will get approval. For us it was well worth the trip. Axumin showed nothing in May with rising PSA of 1.3. PSMA shows Local tumor involvement (T) T0 - No local tumor. Regional nodes (N) N2(CIR,OP) - Common iliacal right, other pelvic lymph node regions are involved. Distant metastases (M) M0 - No distant metastases. We now have a better idea of what's going on and this is going to help with deciding what to do next. Getting this scan was well worth the cost and the hassle to travel for us.
PSMA to possibly be FDA approved in D... - Advanced Prostate...
PSMA to possibly be FDA approved in Dec., according to doc at UCLA
This is post-prostatectomy? Men are cured by whole pelvic radiation and 2-3 years of ADT.
RP was 8/30/2018 and 35 IMRT finished in May of 2019. When I get a chance I'll put the numbers in the profile.
Were his pelvic lymph nodes treated along with the prostate bed? If not, they could possibly still be salvaged.
That's a good question and we will have to talk to the RO on that. Thanks TA.
You mentioned updating your husbands profile, so please tell us his Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!
All info is voluntary, but it helps us help him and helps us too. If you do respond copy and paste it in his home page for his use and for other members’ reference.
Keep fighting Rick!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 10/30/2020 7:19 PM DST
Hi j-o-h-n, is the best way to update profile by just writing a description in the "my story" space? I do want to share some more info. This group has been very helpful and the decisions we have made this past month have been influenced by some of the great guys here. The choices we make next on treatment are going to be very important and I know there are so many here who can help us.
Just type (add) the data following your "Hi! I’m mrssnappy" in your home page. pssst (secret between us..... let Rick do it). You both are in the right place for up to date info and camaraderie (some laughs too). Good guys and gals here..........
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 10/30/2020 7:57 PM DST
(secret between us..... let Rick do it).... I wish, but that's not going to happen. You and anyone who cares to respond will be stuck with me. I did get him to join and I'm pretty sure he's getting the email updates. Maybe down the road he will chime in.
That's men for you.... we're big babies.... Men go to see a doctor (rare occasion) doctor tells him all okay man can't get out of the office soon enough... Doctor tells a woman she's okay... woman asks "Doctor, what do you mean by okay?" I know I'm a guy.....
Good thing he's got you "ask him for a raise in salary"👀
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 10/30/2020 10:50 PM DST
J-o-h-n, my husband and I are a team, we always have been. He is amazing at what he does and I do what I do. I've always been the person who takes care of the paperwork, the details, the research. He would have never found this group on his own. Because of this group we have seen some amazing doctors and got a PSMA Scan at UCLA this week. So, again...it's going to me on this blog for the most part. I always liked hanging out with the guys better than the gals....seriously. My husband...he is pheasant hunting in Nebraska right now and will be elk hunting next week. That's what makes him happy.
Good morning from Las Vegas Tall Allen. I am always eager to read your responses. It gives me hope and it keeps many of us(I believe !!!) in check. Thank you. I have a PSMA coming Nov 3. My PSA stayed twice at <0.1 after my first Lupron shot in September and it remained at <0.1 at the end of October. After my prostatectomy in July 2019 I did not have any radiation and that’s the reason I want to have the PSMA. I admit I am worried about radiation of my entire pelvis as suggested by my RO because of the damage of other organs within the proximity and increase in incontinence. Nevertheless reading your response in this post it makes me hopeful. Is there anything I should know or ask prior or during my PSMA SCAN ? Thanks again for all your great contribution to this community.
I think it is pointless and a waste of a lot of money to get a PSMA PET scan at your PSA. It will show nothing. I frankly don't understand what you can possibly learn that might change your treatment decision.
The decision as to whether you need salvage radiation cannot be made on the basis of a PET scan. It should be made on the basis of the fact that your PSA reached 0.6 after prostatectomy and your enlarged lymph node.
Thank you so much. Very thoughtful of you to reply. Your advice is logical. Unfortunately my reaction was driven by fear of unknown and yes I feel stupid I did the scan yesterday and waisted $3,000. What led me to do it”s this desperation that No doctor could tell me why do I have this persistent pain in the Rectal scrotum area. I have had this pain for years. I figured since this is a more sensitive scan it could pick up some abnormality that other scans did not. I don’t know ! I am seeing my MO AND RO tomorrow. With the chance of being redundant thanks once again for your great contribution to this incredible community.
I was in the same situation. Flew out of Denver into LA in May because my Axumin only showed localized return. PSMA showed mets to 4 distant bones. I hope the approval does come soon, as I expect that I'll be needing another scan in the next year and it would be nice to have it done locally.
I hope the approval is soon too. This scan is so much better than what we can get here in the Denver area right now. It will be good to have these baseline scans for you and my husband so down the road when it is approved we can hopefully get follow-up scans that compare apples to apples.
Please let me know what they do for him as I am at .031 and had a ct scan which my mo will give me results Monday. Mine went from <.014 to .031. So I am concerned I went from undetectable to detectable. After my prostate was removed they found one of my lymph nodes in pelvic area was large so we did hormone therapy for two years and then been off since August 2018 so it reared it’s head I guess . I will retest psa again in 3 months and hopefully lab error . Thx Mike
Mike 21, sorry you are stressing about detectable PSA, but those numbers are still pretty low. If you think there may be a lab error on the PSA, why couldn't just get another PSA blood test on your own? I think most folks can order a PSA test via questdiagnostics.com/home/ For my husband we are looking at a fast doubling and rising PSA currently at 4.7 after surgery and radiation, so not in a good place right now. Don't wait 3 months to get a PSA if it is stressing you.
Just missed you by a day! Had my scan on Wednesday...everyone was super nice. Piper and Carlos especially. Best wishes to you!
Hopefully your scan will help you come up with a good treatment plan moving forward. We went to see Dr. Eshaghian in LA on Wednesday morning before flying home. We are now waiting to see RO after an appointment with MO here in Denver to see if we have a possible radiation option. So many things to consider in choosing the next step for my hubby. Best wishes to you too!
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