I had a radical prostatectomy in July 2015. My PSA has been rising since that time and my oncologist recommended I wait until it reached .5 and get a PSMA scan. This was after I had started hormone therapy to prepare for salvage radiation, but the side effects were unbearable.
My PSA is now .41 and I contacted my oncologist to see whether I might be able to get the scan now, and not wait any longer. To my surprise, the scan is no longer available in Maryland.
Does anyone know where I might be able to get a PSMA scan near Maryland? I understand that it is self pay, and I’m willing to pay out of pocket. Otherwise, my only choice is an Axumin scan and depending on whether anything shows, I’m likely looking at salvage radiation with hormone therapy.
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Hi Allen, I just received an email from NIH and they advise that they are in fact still enrolling patients, but only those referred to the scan by NIH-clinicians. Thanks for your help and please let me know if you have any other ideas.
I would have thought so, but I mentioned Hopkins and my oncologist by name in the email I sent to them that got this response. I just sent another asking if perhaps I could see one of their clinicians and subsequently be referred. I think I’ll also email my Hopkins oncologist to see if he can help. He is a researching and I can’t imagine they wouldn’t be familiar with him given how close these two facilities are, and given the fact that he was a affiliated with the Hopkins trial. I’m going to keep trying and appreciate your help!
Will do, Allen. I’ve already emailed Dr. Pienta at Hopkins to see if he might be able to help as well. Thank you again for this advice. I’ve been so down and out since learning the scan was no longer available... this provides a ray of hope, and I can sure use all rays that are available to me! I’ll do anything to try and avoid hormone therapy for as long as possible. My reaction was almost unbearable back in 2016 when I took it to begin radiation therapy. If that’s all that’s available to me after this long wait, it’s a double punch given I could have already been through it all. Anyway, thanks again.
Call Axumin or search their physician finder tool (axumin.com/patient) and put in your zip code. I always like to talk to a person so look for a phone number as well. They may even offer a way to help pay for it so do some digging.
Thanks for your feedback. I am able to get the Axumin scan, but looking for someone who is offering the PSMA scan that is nearby. In July 2019 I had the Axumin scan and nothing showed. I understand that the PSMA scan is way more successful in identifying where the cancer is growing.
I am not very familiar with non-branded tests. I worked for a doctor for 10 years and got a lot of approvals for Botox for people's migraines. The company who makes the Botox offered the doctor's office tools to help get the approvals and coverage. If you do your homework, dig and appeal and make phone calls it can help if the company who makes the test offers it. Check the company's website who makes the scanner for the test. Many pharmacies offer prescription assistance, so you never know what you find if you are a persistent digger. I can't offer you 100%, but if you hit a stumbling block I may be able to offer up what I know to apply to your own case. Feel free to message me, and I will try to help if I can.
Thank you, I really appreciate your help. The PSMA scan was in trial and still is in some locations, just not near me. I understand that it is now being reviewed by the FDA to determine whether it should be offered as a mainstream diagnostic tool. I’ll keep digging and if you have any additional ideas based on these facts, please let me know.
No sense waiting for something that may or may not be approved. And you know what they say, never be the first to adopt the new technology. Wait for some other asshole to go first. Go with what is proven. I did that 4K score and some other thing, BMX or whatever, they both conflicted with each. I stick with the PSA, MRI and biopsy. Don't sit around for the PSMA - seriously. You are just taking a chance. Go with what is approved now.
I hear ya! If all else fails, I’m hopping a plane to CA and paying out of pocket for the PSMA scan. I started hormone therapy back in 2016 and had to stop... my reaction was extremely bad. I’ll do it and radiation if all else fails, but I want to explore all avenues, while still realizing I have no time to waste. Thanks again.
I thought you were just trying to rule out distant metastases, in which case salvage radiation would be pointless. How does a scan help you avoid hormone therapy? Adjuvant hormone therapy markedly improves outcomes for PSA over 0.6. What helps you avoid adjuvant hormone therapy is not waiting.
I have had two inconclusive auxumin scans.My PSA after brachy and IMRT is now about 100 and the doubling rate is a little over 3 months. I just has a CT scan to determine the size of my hylar and paratracheal lymph nodes which showed tracer uptake on the Auxumin scans. The largest is now 3.6 by 2 cm However the interpretations were that the remote site is not typical of PC metastasis and the recent CT scan interpretation says there is no conclusive evidence of metastasis in the area. But my psa is 100. Should I try to get a PSMA scan. A few years ago there was not agreement as to whether it was more sensitive and accurate or whether it produced false positives because the studies did not follow up with biopsies. Now it seems that the agreement is that PSMA is superior. I am hoping to wait until January when I hope I can get Relugolix so I am interested in accurate information as to the progress and location of any metastasis.
I am very confused by the ambiguity that still exists after tens of thousands of dollars (probably $85K) "worth" of testing. What is contributing to a PSA of 100?
Should I try to get a PSMA scan? Where? I am in CA but will be in WA in October. Is it covered by any insurance? If not what does it cost? Auxumin PET scans I had were $25000 and more although Medical and my supplemental payed much less. Does a private payer need to pay the full cost?
the reference is to UCLA but they mention trials in UCLA and UCSF. UCSF is a drive away, UCLA is a flight and I am far from an airport. Do you have contact information for the UCSF trials or should I ask my oncologist if I should get it and have him figure out how?
Hi Allen. It’s true that I am trying to rule out distant metastases. My impression was that if the scan identified cancer only in the prostate bed or nearby lymph node(s), target radiation would be possible. Are you saying that in either salvage or target radiation, hormone therapy would be added to improve the odds of success? Hadn’t thought it through, but I guess that makes sense. My primary objective really is to live.
You may be overestimating the sensitivity of the scan. Tumors have to have at least 10,000,000 cells to be detectable on the best PSMA scan. For maximum effectiveness, you'll want to irradiate smaller tumors than that. I'm not sure what you mean by "target radiation," but you have to target the entire prostate bed, not just what lights up in a scan (although you can get a boost dose to the bigger tumors). Similarly, if the cancer is probably in the pelvic lymph nodes based on a nomogram, it may be desireable to irradiate the entire pelvic LN field, even in the absense of positive PSMA there. But that is a judgment call between you and your RO.
Whether you use adjuvant ADT with it is based on your PSA at the time of treatment, but also your pathology report.
If there are distant metastases, it is reasonable to forgo salvage radiation. If you want to zap the metastases, and there are few and it is safe to do, that would be reasonable.
Allen, you raise so many questions in my mind. I was given my first ADT shot when my PSA was less than .07. It was at that time that my oncologist suggested that perhaps I was moving too quickly and it might be prudent, all things considered, to stop ADT, hold off on salvage radiation, and wait till my PSA hit .5 and get the PSMA scan. I was told that at that time, maybe the scan would show more precisely where the cancer is growing and those spots could be targeted with radiation. I was never told that these spots could be targeted ALONG with getting the the customary salvage radiation. What you’re saying makes sense, but it was never presented to me that way. If I had ever thought I would need to go through salvage radiation anyway, no matter what a PSMA scan showed, I would have done it long ago, I thought this was a way to possibly escape the harmful effects of salvage radiation, as well as any of the complications that could occur. Given what you’ve said, it seems to make sense to just go have the radiation therapy now, scan or no scan. As for adding ADT, I was advised at a much lower level that I should do that with the salvage radiation. Now that my PSA is much higher, it only makes sense that they’d want me to do it again, right? Another question... is .DCFPyL likely to show better what’s growing than Ga-68-PSMA-11? DCFPyL Is what NIH is offering and if I can get an appt quickly with someone in the GU oncology group, I might have a shot at being involved in the trial. I believe that UCLA is offering the Ga-68-PSMA-11 scan, which would cost me ~$3k. What do you think about me getting the Axumin scan and if distant metastases doesn’t show, just move forward with salvage radiation and ADT? Another thing I don’t understand... why would it not pay to have salvage radiation if there is distant metastases? Isn’t it best to kill the cancer wherever it is, if possible?
"Another thing I don’t understand... why would it not pay to have salvage radiation if there is distant metastases? Isn’t it best to kill the cancer wherever it is, if possible?"
That isn't at all clear. Remember, once there are distant metastases, there are millions of cancer cells floating around in your body and hiding in various reservoirs. I think of metastases as morels popping up under an oak tree. The mycelium is throughout the soil, down to the roots of the tree. Picking morels won't reduce the fungus at all. The STAMPEDE trial found that there is a survival advantage to treating the prostate when a newly diagnosed man is metastatic with only a few metastases, but not when there are lots of metastases. That's because the prostate is the big met factory. Treating the fewer cancer cells in the prostate bed and pelvic lymph nodes when there are already distant metastases is quite another thing. I can't say (one way or another) that there is any advantage, and the toxicity of treatment is high.
To sum it up, what’s your opinion? Is it useful to seek the PSMA scan, or just do salvage radiation With ADT and hope for the best. The scan may show nothing, when in fact cancer is everyone but not yet visible. At PSA .41 after prostatectomy, what are my odds?
Allen, I really appreciate all your feedback... you are obviously very knowledgeable. I research lots online, but often don’t fully understand how to apply the knowledge I gather to my personal situation. Based on your feedback, it doesn’t seem to make much sense for me to fly out to CA for the PSMA scan, if the odds are I will need salvage radiation anyway. My surgery went really well, although I did have one of seven lymph nodes involved. But my PSA has been rising at a fairly slow rate... .41 in five years doesn’t seem too bad. It seems logical there is cancer still near the prostate, I just hope it hasn’t metastasized elsewhere. Does what I’m saying make sense? Also, it seems maybe I have the choice to do salvage radiation without ADT if I start therapy before my PSA exceeds the .5 threshold, right? I know you’re not a medical doctor, but will you share what you would do if you were me? I’m curious to know.
"although I did have one of seven lymph nodes involved."
You didn't mention that. That changes everything. In that case you absolutely will need 2-3 years of adjuvant ADT with whole pelvic radiation. I can't see why you didn't have adjuvant radiation as soon as you knew this. You may still be able to cure it, as in the study discussed here:
It’s simple, Allen. I was following the advice of a medical expert that I trusted, and was attempting to weigh quality vs quantity of life. I’m fairly young and still don’t know the right answer after four years of waiting. Had your state of mind been like mine was during the eight months I was testosterone free after just one Firmagon shot, you might understand. Thank you for the link, but your response seemed a little harsh. Do you understand what it is to be so depressed you don’t see the use in living?
I'm not blaming you, I'm saying your doctor should have noticed this red flag and suggested you have immediate whole pelvic radiation with 2-3 years of ADT. From the casual way you mentioned this, it seems you were led to believe it's of little importance, when in fact it's of overriding importance. It's not me that's harsh, it's your disease. It's no one's fault, it just is the hand you were dealt, and like it or not, it's up to you to play it. The cancer took away many of your options.
I still don't understand why you'd ask "Is it reasonable to believe the cancer is still confined to the prostate bed 4years out?" when you knew it was already in your lymph nodes from your path report immediately after your surgery.
The first thing I did when I was diagnosed was to make an appointment with a psychotherapist. It helped me a lot to deal with what I had to at the present moment and not to spend too much time with what might be and what might have been (I learned to practice Mindfulness as well). My mother was hospitalized for depression so I am familiar with that black dog. She finally found the right antidepressant for her, but it took a while.
I got mixed signals from the very beginning. Directly after surgery, I was told there was nothing more to do except do quarterly PSA testing. Hopkins started me off with regular PSA testing, not even ultra-sensitive. After lots of research on my own and realizing there was even such a thing as ultra-sensitive testing, I was afforded the test, albeit reluctantly. Then when my PSA reached .05 I was told I should have radiation therapy with ADT. This confused me because it was only my push that got me the ultra-sensitive test in the first place. I wondered why all of a sudden I was told to take action, when if I hadn’t pushed for more than regular PSA testing, the slight rise in PSA would never have been detected, at least until it hit .2 (or maybe .1?) Then I started with ADT and my reaction was so bad, I decided to see an oncologist to compare a second opinion with the radiation oncologist’s recommendation. It was then that I was told maybe I was doing too much, too soon. That’s all I needed to hear, given my emotional state of mind, and I immediately stopped going down that path. I was led to believe that at .5 I could get the PSMA scan and if cancer were found it could be “targeted” with radiation, rather than the full salvage radiation. A week ago I discussed with that same oncologist who gave me the second opinion and recommended I wait, the possibility of getting the scan now, at PSA .41, given the whole Covid situation and possibility that when I hit the .5 threshold, things might be shutdown again and I might not be able to get the scan. This is when I learned the scan was no longer available. I asked if the recommendation to stop in my tracks four years ago was because it was already likely the cancer had spread, given the initial lymph node involvement. The response was to do salvage radiation with ADT immediately, and there still existed a good possibility that the cancer is limited to the pelvic region (I guess I misspoke when I said prostate bed) given how slowly my PSA has been rising (5 years to get to .41) and that still, salvage plus ADT could cure me. It still seemed reasonable to me, given it was only one node out of seven that had cancer, and it was microscopic at that. I guess maybe I deluded myself into thinking only one node and microscopic... perhaps no other nodes were effected... AND, I’m still being told there is that hope that it’s still confined. Anyway, that brings me to today and the decision to or not to treat. If there is still a possibility there is no distant metastases, I suppose taking the risk of being permanently incontinent or worse is worth taking. However, if it’s unlikely that it’s still confined to the pelvic area, including lymph nodes (I really don’t know where specifically these nodes are) then it seems crazy to put myself through salvage radiation (risk of incontinence, almost certain impotence, and possible bowel issues) and ADT (major depression and physical side effects.) it’s a difficult decision to make all these things considered, especially given I feel physically fine with none of these issues at present. So, I’m really frustrated that I’ve been so proactive with researching on my own, and asking questions of multiple experts in the field, and I still don’t know what to do. Make sense?
And I realize that there is no crystal ball with all the answers. I just want to make an informed decision, but feel like maybe the experts I’m depending on are not considering all of the important facts of my case.
Hi, your PSA is low took some time to double, what did they put you on which medication?
Sloan Kettering in nyc has the PSMA is a research program , I’m not sure they will take you as you already started Hormone therapy
They may offer something else
Did you have clean margins? And what was Biopsy determination has spread anywhere for example did they remove a lymph node
I guess the other thing to ask is how old are you?
If you’re in Maryland I would assume you’re going to Jon Hopkins and they’re going to offer you radiation in combination with hormone on therapy
Your PSA has been safe for a long time so I’m sure they’re watching it very carefully hormone therapy is nothing but stress but it does work for some people
If you can bear the hormone therapy and it reduces the PSA down to undetectable you’d be a very good candidate for radiation therapy
What types of problems are you having of course we know the problems which part is bothering you the most on the Hormore therapy
I hope the PSMA test becomes a standard soon so everyone has less stress
Hello Frankie. I’m 65 and having no issues at all. I’m being followed by getting my PSA tested every 2 months, and anticipated I’d get the PSA scan through Hopkins once I hit PSA of .5, which I was told would give greater possibility the cancer would show on the scan. Problem is the trial through Hopkins is over. At time of prostatectomy I had Gleason 7, clear margins, no seminal vesicle involvement, but one of seven lymph nodes had microscopic growth. I started hormone therapy in preparation for salvage radiation 15 months after surgery, but went for second opinion at Hopkins and decided, based on availability of the PSMA scan, to wait. I had one hormone shot, which depleted my testosterone for 8 long months. Depression was my biggest issue, but PSA was reduced to zero for that entire period in time.
Wish I had a local location for you to get your pet scan however I needed one in 2018 and I will end up going to Sheba Hospital in Israel Had an excellent experience and results
PSMA is available at UCLA, about $2,700 out of pocket expense plus a nights stay prior if you are traveling from out of area. Minor wait time.
UCSF is done with their trial but continues to provide the scan. No clear answer on cost but they will bill your insurance. They have a long waiting line.
I had my PSMA once my PSA was over 2.0 as results at that level are very accurate. Two sites were found: one submillimeter in my right pelvic bed (I did have left and right prostate base positive margins on RP), the second one millimeter lesion in my illiac bone. Both have been treated with targeted proton radiation in San Diego.
I too have felt that targeted radiation treatment (protons) makes more sense than having the collateral damage to the bowel and bladder that can be expected from standard radiation. Studies show a benefit to going after the cancer sites that the newer scans can find.
I am no fan of ADT due to the miserable side effects (stopped it and Xtadi at 2 years) but will go to the estrogen patch if my PSA does not continue to drop. For now watching the PSA on a monthly basis. I am not deluded that I wont need some form of ADT but I finally feel good again after ADT, lymph node chain and single bone lesion proton treatment, 4 rounds of chemo (stopped because of progressive side effect), along with Xtandi plus Xgiva over the past 3 years. This holiday has been welcomed.
Auxium ... may be covered but not as sensitive at low PSA levels. If this is your option, I would seek out an optimal PSA level.
Hi Chazem... I appreciate your feedback. I had negative margins, Gleason 7, no seminal vesicle involvement, but microscopic cancer found in one of seven lymph nodes. UCLA seems my best option after much research I’ve done on availability, but my PSA is still fairly low at .41 and I don’t know if anything would be detected this soon. I had the Axumin scan in July 2019 when my PSA hit .2, but it showed nothing. Anyway, it’s mind boggling to figure next steps given the possible adverse effects of salvage radiation. One day I think yes for sure, and the next day I’m thinking the opposite. It seems you are doing well all things considered, and I hope you continue doing well. That ADT is really awful, so hopefully you won’t need that again for some time to come. Can you explain to me more about the estrogen patch? I’ve never read anything on it and wonder what it is specifically used for and what the side effects might be. Thanks again... take care.
Call and talk to a doctor in the radiology department. They will give you optimal PSA levels. You should also get on their schedule now so that you can get the PSMA rise to coincide with the scan date.
Estrogen patch has been written about. Check other peoples past posts. In general it will drop your T more gently and is reported to be more tolerable than the shots.
I wasn’t suitable for pelvic wide radiotherapy as I have a particularly bad bowel and had a PSMA scan in Heidelberg University Hospital cost me €1800 plus travel. That was followed by stereotactic radiotherapy May 2019 to the lymph node that showed cancer in the scan. PSA dropped to 0.013 and is increasing again. Currently 0.035. Current plan is to wait until it increases to 0.5 and have another. I’m being told hormone treatment will definitely be part of the plan at that stage plus more radiotherapy & possibly chemotherapy. Like you I have a fear of hormone therapy because of the depression possibly involved & this has bought me some time before having to go on it. If there will be a cost down the line time will tell. Unfortunately I’m incontinent from the treatments anyway and suffering from fatigue and brain fog. Best of luck to you.
Hi Bcgkelly. I already know about the depression caused by ADT for myself and it was brutal. What was your PSA when you went for your first PSMA scan? I’m not sure if my PSA is high enough for the scan to even detect anything this early. Was your incontinence caused by the lymph node radiotherapy? How about the fatigue and brain fog? Sorry for all the questions, but still weighing my options here. I hope your situation improves and for all in our situation, I hope some sort of treatment breakthrough is soon made. Take care.
Hi billd9946--I did a double take on your 'billd' ID. I have used that when the site dictates the form of the ID. Normally I am 'bdy942.' And then your story is much like mine. The issue around PSMA is new to me. The history -- you can skip down to the question if you like.
RP 11/2008; Gleason 7; 8/12+ on the biopsy. PSA relatively low, but went from 0 to over 2 in less than a year, prompting my primary to order the biopsy.
PSA headed back up around 2013. There was a spell when my insurance provider changed and the next PSA was in 2017: >3. Kept track for a couple 6 mo periods and when it got to over 7 I had a PET scan and the oncologist suggested I talk to a cyber-surgeon. The cancer was very contained--in a seminal vesicle. ( I got the radiologist to give me copy of the scan and studied it before the post scan consult. The big red area around the liver shook me until i figured ot what it was. There was one small, bright, well defined spot.)
I had cyber surgery --stereotactic radiosurgery-- May/June 2019. 30-45 min tx for 5 days and it was over. PSA dropped slowly until July/2020 when it went from 0.8 to 2.2 in 4 months and 2.7 2 weeks later--Like the president, I called for a re-count.
So back to the beginning. A second CT/PET scan showed pretty much the same as the first and the cyber-guy feels he can repeat the tx. This time with ADT. So I get a do-over. I'm on the 3rd day of bicalutamide (Casodex) to prevent a testosterone spike when I get the first leuprolide (Eligard) injection.
QUESTION
I had not heard of PSMA. Reading up on it, it seems that it's used for tx of advanced or metastatic cancer. Not my situation, as far as the screening I've had. Cyber-guy says that the cybersurgery tx is complete 90% of the time. I'm in the 10%. Possibly some bowel shift during tx, though the fiducials should handle that. Another possibility is that there are cancer cells that are not picked up in the PET scan, though why would the PSA begin to drop if there were active cells elsewhere?. Is that what would more likely be picked up by PSMA scan?
I asked if the DaVinci surgeon had missed the seminal vesicle--he had been very thorough. 5 hrs, and I read his report. The margins were close, but clear and he took several lymph nodes that were all clear. The cyber guy says it's possible to have been cells in the vesicle bed.
This 2nd round has me nervous--will the ADT change the size of the target area? The oncologist wondered this, but the cyber-guy say it's not an issue. If it does, is the beam likely to miss and hit the colon or some other thing and I end up with a colostomy bag? The alternative is ADT tx for ... life? as long as I can stand it? I get the shot on 12/22 then another 1 or 2 fiducial beads on 12/29. The preliminary CT/MRI and the 5 days of super-zap and a 3 mo f/u and 2nd shot in mid-March. If this doesn't handle it completely I guess it will be ADT.
It's "The Season" and the cyberknife tx won't be until mid January. Guess I'll know how the ADT affects me.
Thanks,
bill
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Interesting story from the oncologist, and also my experience with Trimix.
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