PSMA PET scans : I am currently... - Advanced Prostate...

Advanced Prostate Cancer

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PSMA PET scans

Ian996 profile image
14 Replies

I am currently undergoing SBRT to three mets in my upper right lung as part of the comet 3 clinical trial.

I would like to know how long I should wait before getting a PSMA PET scan

I stopped taking Xtandi 2 weeks before treatment and will not start taking it again until 2 weeks after treatment Treatment consists of radiation to the mets for 5 consecutive days.

I should also note that my PSA has been rising steadily for the past 6 months. My latese test was 0.8 last week, 0.6 5 weeks ago and 0.4 10 weeks ago

thanks for any info

ride fast and take chances

Ian

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Ian996 profile image
Ian996
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14 Replies
Tall_Allen profile image
Tall_Allen

What do you need the PSMA PET scan for?

Ian996 profile image
Ian996 in reply to Tall_Allen

I want to know if there are more mets. PSMA PET scan is not a standard of Care in BC The oncologists here rely solely on bonescans and CT scans In early 2021 a bone scan didnt show anything and a follow up CT scan showed 1 met on my L1 vertabre. I went to UCLA and got a ga68 PSMA PET scan which showed mets on L1 T9 and T10. I had these treated at UCLA with SBRT. I guess it is a confidence thing . I want to know what is going on Are you suggesting ignoring the possibility that more mets exist and if they do no worries dude this shit is going to kill you anyway so kick back and enjoy the ride

BTW you didn't answer the question

Tall_Allen profile image
Tall_Allen in reply to Ian996

SBRT to oligometastases maybe has a benefit when used with ADT if there are 3 or fewer metastases. But you've had metastases more than that in your bones and lungs, so it if there is any benefit at all, it is probably minuscule. There is known benefit to systemic therapy with 2nd line hormonals, chemo, Xofigo, and Pluvicto.

StePeteMN profile image
StePeteMN in reply to Tall_Allen

But lungs are important for breathing...

j-o-h-n profile image
j-o-h-n

When I hear the word lung(s) I perk up with my overused post. "Keytruda worked on my Melanoma Lung Metastasis"

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/07/2023 1:34 PM PST

Drandma profile image
Drandma

We met with the radiation oncologist yesterday to discuss radiating the L2, a lymph node in the peritoneal and a lymph node in the right hilar. My husband just completed SBRT to the C2. Of course, the RO has to give us all the worst case scenarios of side effects and now my husband doesn’t know what to do. In particular, his concern is to the right hilar lymph node. How are you feeling since your radiation? Was your RO concerned about that particular area? Ours referred to it as the “no fly zone” but feels confident they can radiate

StePeteMN profile image
StePeteMN

I'm interested in your case as I have lung nodules too. Rad Onc says too many to radiate. If yours can be successfully diminished with radiation, I think that would help you a lot as it's important that we have clear lungs so we can breathe, regardless about the systemic benefit of eliminating those tumors. As for your psma pet scan, an interesting note, psma pet scan does not light up for my lung nodules, but they do show up on the choline pet scan. It's important to remember that psma pet scans are great, but they're not perfect. Different cancers are avid with different PET scanning Technologies. With all the talk about psma PET scans and their benefits, it's important to remember that they only show cancer that is psma avid. Did your lung metastases show up on a previous psma scan?

Ian996 profile image
Ian996 in reply to StePeteMN

The mets in my lungs did show up on the PSMA Pet scan and on the CT scan. I have completed 2 of 5 rounds of SBRT to the lung mets # 3 is today and so far so good. Worth noting the Oncs tell me the lung mets are small and the bone mets dont show any changes since 2021

RMontana profile image
RMontana

Definitely get a PSMA PET...find out what is there and use this as a 'baseline' if nothing else...it would be great to know there is nothing at this point...get these scans as often as you can and when PSA is moving in the wrong direction...

PSMA PET has two aspects; Sensitivity and Specificity...the first is finding a tumor and the second is knowing its PCa...Sensitivity starts to be very good at 0.5 even if you are on ADT! So you are well within the ball park where PSMA PET will help you get a better handle on what is going on...sure if you wait for PSA to rise to 2.0 Sensitivity will be near 100%, but so will your PCa have had time to spread...once its out then the ball game changes dramatically...here are some links to look at...

healthunlocked.com/active-s...

healthunlocked.com/active-s...

I got PSMA PET with PSA of less than 0.10 and I did not care one bit about sensitivity. Dr Calaise at UCLA Med Center told me that if I had tumors of any size, regardless of PSA levels, that the antigen (or surface area) of the tumor would still allow binding of the litigant and allow detection...so before I did my IMRT sRT (salvage) I did a PSMA PET to establish that I had no cancer outside my prostate fossa area of any significant size...it would not have picked up tiny tumors or cells of course...Rick

PS listen to this entire podcast but at MIN 30:32 the panel of experts clearly state that PSMA PET is re defining PCa treatment and changing the SOC...its changing what we even know about PCa...why on earth any man with PCa would not get a scan, if safe and affordable, as often as possible to CATCH this disease before its untreatable is beyond me...my opinion...Rick

healthunlocked.com/active-s...

Ian996 profile image
Ian996 in reply to RMontana

I spoke with my oncologist this morning He says by all means get a PSMA PET scan but wait for 4 to 6 months otherwise we might see false positives

RMontana profile image
RMontana in reply to Ian996

…that does not make sense to me. I would definitely get a second opinion on that. The whole aspect of the PSMA PET is the fact that it has a very low false positive profile. Specificity is nearly 100% correct ONCE it finds a tumor. Sensitivity is another issue. If your PSA is lower than 0.5 then its percentage is less than 50% that it will find something (check me out by reviewing the studies that I post on ). But once PSMA PET finds a tumor its over 90% positive that it is prostate cancer. I don’t believe that you have received the correct recommendation. Double check it.

MateoBeach profile image
MateoBeach

Yes it will take some time for the lung Mets to diminish on PSMA scan even when the SBRT is effective. Be patient. Follow the usually slow decline in PSA as a positive indicator and get the PSMA scan in about 6 months to see how it is progressing. In the meantime: Live!

Ian996 profile image
Ian996

here is my latest update PSA is rising June 0.79, July 1.1 , Aug 2.5, Sept 2.0 Oct 2.3 Nov 2.4 Dec 2.9 BC Cancer offered an F18 PSMA PET scan in late nov and a CT Scan CT shows nothing PET scan was very vague but some new activity on T6 T11 and T12 no new activity in my lung. I am still on Xtandi and Zoladex. So is chemo my next option? BTW I was 1st diagnosed with PC 5 years ago on my 65th birthday I have been metastatic since may 2021

MoonRocket profile image
MoonRocket in reply to Ian996

Maybe Provenge could be an option while you investigate other options....or another clinical trial using a PARP with ADT + Abiraterone or Xtandi. Lot's of possibilities I believe.

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