I have Advanced Metastatic Prostate Cancer and am being scheduled for my 4th Bone Scan and CT Scan in the past 1-1/2 years. Considering the PSMA-Pet Scan is now available at my treatment center, I think the Bone and CT scans are a waste of time. My doctor is reluctant and says the PSMA-PET will not help since we already know my cancer is metastatic.
Since my PSA is now on the rise again, it seems to me that the Bone & CT scans are not sensitive to find the smallest potential tumors. PSA is now 12 and climbing.
Does anyone have the same situation?
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bglendi53
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If CT/bone scan show metatases, the question is what will change if you see more metastases with the PSMA PET/CT? You can just continue with systemic therapy. However, if you want to get a Pluvicto or Lu177 therapy you will need a PSMA PET/CT first.
A PSMA PET/CT is an excellent diagnostic tool. If you want to have one, you can get it done. If it turns out that there are no more then three or four mets, you can find a doctor who will radiate these mets. If you have more, you could try to get a Pluvicto therapy.
I agree with your doctor. He is using the bone scan/CT to monitor progression on your current therapy. If you switch to a different kind of scan now, you will not know if any increase in metastases is because the therapy is failing, or if it's only because the new scan is more sensitive.
I don't watch such videos, sorry. Especially not ones in which doctors are talking to patients and not his peers.
But Dr.Scholz is wrong if he thinks bone scans/CTs are history. All of our current SOC is based on trials where metastases were detected by bone scan/CT. The findings are not valid for PET scans. It will be many years before those trials can be re-done with PET scans. And by then, there will be more sensitive detection methods, or imaging might be scrapped altogether in favor of molecular biology.
Answer this - why do you care where one large enough to detect on that PET scan is? (Keep in mind that diagnostic tests only have value if they can potentially change a treatment decision)
I care because my PSA is climbing rapidly and the current imaging is not finding anything new. The PSA has to be rising for a reason I would think. Since myb PSA got up to 165 before I moved on to oncology I want to stay on top of it before it gets out of hand.
The only valid reason is to change your therapy. What will you do differently if it finds something? What will you do differently if it doesn't find anything? That's an expensive test to take if it has no other purpose than to satisfy your curiosity. Let's assume it finds more metastases - what then?
If the only possible change is to change from your current therapy, than you have to get the same test you've had all along. If you get a more sensitive test, you can't know if those metastases were there all along or if they are new.
I had a PSMA scan and as far as I understand it, the PSMA scan is specific to a protein within the prostate cancer cell. So it only lights up a percentage of all cancer. In my situation the pMSA scan came back negative for that protein yet my body is littered with cancer. The scan was conducted to determine if I was a candidate for the LU177 treatment, which I’m not.
Thanks for sharing. That's an important point I hope caught attention here.This likely accounts for TA often reminding to get a FDG-Pet scan to compare to PSMA scan as its possible LU-177 wont be effective with some.
Now into my 13th year, and after PSD increased from 1.2, 3.65 to 14.23 in two months, my oncologist ordered a PSMA from the Hollings Cancer Center at MUSC. My oncologist recommended I be interviewed for clinical trials in Charleston SC. Dr. Michael Lilly, chief investigator, recommended a trial; remaining on Zytiga/pragdasone with Opaganib. Tuesday I has bone scan with contrast, labs, Cat scan with contrast, psychological screen and EKG. Felt like a pin cushion!
Establishing a base line for qualifying candidates requires a data base. So far the preliminary results indicate a stable and low tumor load. I hope this is of some interest to the Boy-of the-bonny blue Ribbon; and those who care for us.
God bless,
PeteG
I concur with your Doctor. I have had 25 nuclear bone scans paired with abominable CT scans starting in 2003; the last in 2016. Tried and true method to establish base lines, then mark progress. I admit the new scans were not available when I entered this arena, though in comparison, my treatment would not have changed with any other type of scan.
Another thing I don't understand is that once I had the Lupron and Erleada, not only did the PSA drop like a bomb at first, but I had numerous met's on a scan in August of 2020, and subsequent scans showed improvement in most areas with terms like " near complete resolved uptake". I asked my Dr. if Erleada was a chemo drug and he said no, yet it gets delivered in a bag marked Chemotherapy. But maybe they were starved by lack of testoterone, which is now 19.
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Darned it GD! 25 nukes must be some kind of record amigo! Dam . I’ve had 7 yearly now . Woah! U da man!
In Fall 2018, just as I was beginning Lupron, I had a number of bone scans, CT scans, MRIs, and finally a full body PET Bone Scan. The PET showed up to 10 or so "things" that might be problematic. Over the next three years, I had more MRIs of pelvic/prostate area, and 3 Axumin PET scans. Now about 3 Mets are still showing (actually one of those disappeared on last MRI, and the MRI didn't cover the spine, where the other two are). So I suspect we'll stick with PETs and MRIs going forward.
A good question is: can a bone scan, CT, or MRI pick up anything that doesn't appear on a PET (leave aside PSMA PET for the moment)? I'm not sure I've seen a clear-cut answer to that one.
Would you please be kind enough to tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
ALL INFO IS VOLUNTARY, but it helps us help you and helps us too.
When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.
I was diagnosed in Feb, 2020, had robot assisted radical protetechtomy on April 28, 2020. A week later I get a call that they did not get it all and they would follow in 12 weeks with a PSA test. Before surgery, the was no metastatis detected. Age then was 66, 68 now.
My cancer was Geason 9, grade 5. In early August of 2020 my first PSA came back at 52, a week later, 67, and two weeks after that 165. Immediately moved from Urology to Oncology.
Began hormone therapy of Lupron and Erleada ( apaludamide ). PSA dropped to .20 by March 2021. But has slowly been climbing with every test since, latest was 6 weeks ago at around 12.
Being treated at the Cleveland Clinic, not willing to name doctor at this time, not sure why that matters.
On March 1, I started a Xofigo treatment every 30 days for 6 months. Just had second injection this week. No PSA was checked.
Side note, my local Dr. Never checked my PSA for three years, but when I was diagnosed I only had 8.4, so not sure if it even mattered.
Do you know your PSA at the day before your RALP? Labs on admission is standard practice here in Europe. From the, post procedure, unbelievable PSA values that you quoted I am not any longer sure regarding the practices followed there. I can see 3 variants:
a) No labs before procedure.
b) Labs reporting a PSA value compatible with that of diagnosis 2-3 months before, i.e somewhere around 10.
c) Labs reporting a PSA value compatible with your post procedure ones, i.e. 20 or so.
In all 3 of the above I sense negligence or mal practice and fully understand your reasons for devulging not the name of your urologist.
Thank you for your quick and detailed reply. Only reason for Doctor's name is in case someone else uses him/her and you wish to exchange war stories. You had a hell of two years and hopefully you're in the groove now. It's a good idea to copy and paste your details as your bio in your home page. It will come in handy for you and other members in the future. Stay well and keep posting.....(try to laugh every day)....
Yea, I'd just as soon keep the Dr's name out of it for now. I'm going to a world class hospital and the Dr. has very good reviews. I may be over thinking it, but I come from and engineering background and "logic" was everything. So I put logic into all my questions.
Now thats joke is a great one for us chemo fogged troubadors.....i read the joke...went back thru the post....wtf is j.o.h.n. talking about.....i got it......2 days later.....peace to ukraine f🇺🇦k putin.....bw
Logic is good! Much of what we do is a combo of Science and Art. Logic does not always apply. We are just one huge science experiment as far as I can see. Mike
Hi Bglendi53,Enjoyed this back and fourth. We are all learning with the new Scans vs old CT/MRI/Bone. It seems, in summary if your base was with old scans, then today, only the old scans work to compare progress/regression. Still….if insurance will pay (approx $3,500.-Medicare will pay for 1 per year), for FDG Scan or PSMA Pet, in addition to old scans, you may learn more.
Also, simply copy/paste your response to John, above for your Bio page. This is where many go to learn your history before responding. Your Bio appears empty.
Thanks Mike, I'm still learning this site, so I'll get that done. I'm almost 69 but I'm still on my wife's insurance plan as she is still working for another year or so. I haven't signed up for Medicare Part B because her insurance has been really good so far, but I'm thinking I better do it by the first of next year because I might be better at covering certain procedures, then use her plan as my supplement. Still a lot to figure out.
I copied the info I gave John into my profile, but I don't see it showing up there. I did have a few words in there before, not sure what I'm doing wrong.
Sounds like your MO is stuck following some SOC “script “ and not incorporating the now established roles of PSMA PET scan to determine if Pluvicto might be beneficial or not. I would consider changing to a more progressive and well informed MO, one who keeps up with current literature and practice trends. Get the PSMA PET and also an FDG PET for concordance.
I'm sure there is some truth to that, but I quite sure that the Cleveland Clinic is a progressive thinking place when it comes to treatments. I'm working on getting the PSMA-PET once I find out what my insurance covers.
My doctor explained that my insurance company required CT and bone scans before they would spring for the Axumin scan we both wanted. Just seemed like an added expense to me. Those coarse scans turned up nothing. Neither did the Axumin scan for my slowly rising PSA reading of 1.8 5 1/2 years after full gland HIFU.
My doctor says it won't make a difference because we already know my cancer is metastatic. However, my PSA is constantly riding, even though the bone and CT scans look stable. That's where my concern is.
Thanks you so much for the feedback. My MO seems to be reluctant, but from what you are saying we both share the same feeling about PSMA imaging vs traditional bone and CT scans. He is putting me through a bone and CT Scan on June 2nd, but after that I'm going to become more aggressive in my demand for PSMA.
I have the same problem as you and my PSA is now at 85 and after a lot of insisting from me they are at last next week I am going to have PET scann done . Text me on FB Sal yakubov if you like .
I want one(PMSA PET) just to truly know where I am at on this journey none of us wish to be on. You can not fight what you can not see. I fight to win...can't plan if you haven't identified every available target! We fight, we fight...for victory and if not possible then for extra quality time before tshtf.
For years my PSA is going up . It came back five years after they took my prostate out and since than it has not stopped going up . The doctors keep on telling me not to worry but I am ! Now my PSA is at 85 and finally they are sending me for a PET SCANN next week . I have had bone and CT scanns done every year the last 10 years and nothing .
Reading your bio I see your PCP failed you by not checking your PSA for three years. You should not be seeing this doctor in my opinion. What your PSA was before the 8.4 is important and the rate of rise is important, if you were to seek litigation. If you wish to be able to radiate your metastasis you need a doctor on board with that plan. You're at Cleveland clinic, are there no such doctors supportive of that approach?
Dr Kwon at Mayo Clinic is such a doctor, and has been doing so for a decade. Most hospitals have just begun to learn and offer what MAYO clinic again has done for a decade.
PSMA scans can effectively be used to locate PC for radiation or other treatments.
I live in a small town and at the time of being diagnosed, I was only seeing a PA. She has since left a couple years ago and the practice itself has been sold. So my options are limited if any.
The PSA before it got to 8.4 was only 5.3 when the PC sent me to the local urologist. But he waited another 3 to 4 months before doing a biopsy. Even so, those numbers aren't horrible.
Hi. I had my prostate removed 2002 in Toronto and my PSA fell to -0 than five years later it came back . I had bone scanns and CT scanns done every year and nothing . Now my PSA is at 85 and the doctors keep on telling me not worry since 21 years have gone by . The fanny thing is that the PSA is still going up and I am very worried !!! Since I live in Bulgaria from a few years ago my hospital care is very limited because I live way up in the mountain and far from all big cities where all the scanners are . Just last week my doctor at last said that I should have PET SCANN done . Well at last next week I am going to have one done thank God . Here is my my FB profile Sal Yakubov . Feel free to write ( TEXT ) me please and good luck to you .
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