Restaging

[warrior22]

MO tells us that there is no value in PSMA PET now. Her plan is to reimage CT chest, pelvis, abdomen, and repeat bone scan and compare to initial in May. All were negative then. MRI showed IV PCa and 2 inguinal nodes: started 30 days Casodex, now on second Eligard. Local pelvis and LN Rad to start in November. We have reached out to RO to see if he agrees. She says now that PSA is 2, down from 100, no current benefit to PSMA.

[fireandice123]

I certainly don’t have the medical knowledge to address this with any authority. However, I can relate my experience. When I had my PSMA scan my PSA was 0.9, maybe a bit higher by the time the scan was done. It found 4 small spots that were not previously shown by either the CT or bone scans. I had CT and bone scans right before the PSMA and they showed nothing. As a result I’m back on ADT. If I hadn’t had the scan I would have never known that I needed additional treatment yet. For you, without the scan it seems to me that there’s the possibility that there are areas that might not be known to radiate.

[Seasid in reply to fireandice123]

did you SBRT your active mets?

[fireandice123 in reply to Seasid]

No, not the new mets. I had RT on the original mets. I discussed additional RT for the new mets with my RO and MO. My post ‘Starting Lupron … again’ deals with that. The upshot was that the current research does not support RT as a curative treatment for more than 4 mets. With the original mets I have a total of six, all close together. That view may change in the future as, according to my RO, there are ongoing studies dealing with the efficacy of RT on up to 10 (I think) mets.

[Seasid in reply to fireandice123]

i would ask them to SBRT my new mets if it is feasible without damaging vital organs etc. Especially if they are small.

What do you think? SBRT can initiate positive immune system reaction? Am I correct?

[fireandice123 in reply to Seasid]

I’m not aware of the immune response. It may well be so. I just don’t know if it.

I personally wouldn’t have a problem with SBRT. If I could have talked my MO into it I would have gone ahead. And he said it’s possible that I might have helped in my situation. But in the absence of research he felt he couldn’t do it. If I was castrate resistant or was in pain he would have gone ahead and zapped me. But since I was still castrate sensitive and asymptomatic he felt that ADT was the way to go right now. And even if I was zapped I most likely still would have been required to be on ADT for a period time afterwards anyway.

Also, there is the factor of insurance. Don’t know how it works in Australia but in the US it’s difficult to get insurance approval for procedures not supported by research.

[Seasid in reply to fireandice123]

is it very expensive to zap with SBRT 4 small mets?

[Seasid in reply to fireandice123]

you can Google it:

SBRT for antigen exposure

[ImaSurvivor1 in reply to fireandice123]

A medical oncologist might not be the best person to be talking with about SBRT -- at least not without also talking with a radiation expert.

[fireandice123 in reply to ImaSurvivor1]

I meant above that I talked my RO. Typo on my part. I corrected the post.

[ImaSurvivor1 in reply to fireandice123]

👍

[Seasid in reply to fireandice123]

we understand.

[Seasid in reply to fireandice123]

It was also agreed between my MO and RO to see the RO after my PSA started to rise. And it is now. My last PSA is 1.25 and I will see what the RO will say. My idea is that if they see something on the PSMA PET scan than we could consider SBRT the met if it is possible to do safely without too much damage to the surrounding organs and tissue etc

[chickgreen]

I had a talk with MO about the same subject, and a few additional doctors as I'm a nervous nellie and need my hand held sometimes. In my case (I'm on Lupron + abiraterone PSA < 0.02) they managed to convince me that the PSMA scan needs to have some PSA tobind to and 'light up'. With no PSA present in my system, the PSMA scan becomes valueless.

Your case is somewhat different, in that PSA remains at 2 - I would be asking the MO (or the second and third opinion doctors) why a PSMA scan would not be worthwhile, considering that PSA is present.

[Tall_Allen]

Any test, including a PSMA PET, only has value if it can potentially make a difference in a treatment decision. The trial showing that irradiation of the prostate in oligometastatic patients was based on bone scan/CT, so it is important to stick with that.

[warrior22 in reply to Tall_Allen]

ok ty

Prostate and 2 proximal LNs only. Gleason 9 .

[Tall_Allen in reply to warrior22]

Let me change my opinion then (please fill out profile to avoid confusion). I thought you were oligometastatic, but you are regionally advanced. If there are no distant metastases, you can still be cured by whole pelvic radiation. A PSMA PET scan could have been useful in determining those lymph nodes (other than the two) that may have benefited from a boost dose. But it is probably too late for the PET scan now. The Eligard shrinks the lymph nodes (which were obviously too small to be detected on a CT scan) so they can no longer be detected. But the LN micromets will still get the area radiation dose.

However, it is important that you also get 2 years of ADT+abiraterone in addition to the radiation. Let your oncologist know that the latest NCCN update (last week) revises this as the new standard of care. "Abiraterone with ADT should be considered for a total of 2 years for those patients with N1 disease who are treated with radiation to the prostate and pelvic nodes. "

[warrior22 in reply to Tall_Allen]

MRI shows only 2 LNs ( is considered oligo from my research at less than 5 was the latest I read )

I did complete a profile several months ago.

Ty 🌺

[Tall_Allen in reply to warrior22]

If you click on your butterfly icon and the word "More" in the upper right corner, and select "update profile" it will allow you to post a profile that anyone can see just by clicking on your name.

The term "oligometastatic" is reserved for 5 or fewer distant metastases. If all the metastases are in the pelvic lymph nodes, it is called "regionally advanced." The difference is important. Regionally advanced is potentially curable, while oligometastatic is not (based on our best current data, which could change).

[cesces in reply to Tall_Allen]

"Regionally advanced is potentially curable, while oligometastatic is not (based on our best current data, which could change)."

So very interesting that this would be the case.

[Seasid in reply to cesces]

i think (i am not sure) because maybe regionally advanced for some strange reason is not concidered as metastasis. (Can you check this?)

[Tasha51 in reply to Tall_Allen]

Hi Tall Allen, The NCCN document is 204 pages long. Would you be able to tell me on what page ADT should be considered for a total of two years? Also I understand the dose of radiation for salvage has changed. Do you know what page that is on? Is there a link to JUST the updates for the NCCN document? Thank you Tasha

[Tall_Allen in reply to Tasha51]

I gave the exact quote. I'm sure you can find it.

[Hidden]

First, I wish your husband the best in killing the little bastards. I am not current on 2nd & 3rd line ADT; nor am I current on the “new” scans. However, I will state that since 2003, I have had 26 nuclear bone scans paired with soft tissue CT scans. This type of scan is trued and true; yet it is dependent on a person who knows how to read....... I started with a baseline set of scans when first DX’d with PCA. Things hot real serious for me when I developed two metastatic lesions in my spine. I actually stood with my MO after each set of scans marking the difference overtime with treatment. To me, once one weeds out arthritis spots, it’s quite easy to see.

The point that I am making is to follow the lead of your MO. She is using diagnostic tools that have served the cancer populace for years. One thing that I would offer is to research and then enter into a discussion of micro-metastases and what treatment can be brought to bear on metastatic lesions before that are “detectable”.

It’s a long fight, but antidotally, at 75, I am still winning after 18 years of advanced prostate cancer. BTW, I stayed on Lupron/Eligard for 6 1/2 years. My last set of scans was in 2016.

GD

[Peace-to-you]

My 2 cents…get a 2nd and even a 3rd opinion; one of them should definitely be a radiation oncologist because they’re the only ones who can offer a true cure…it won’t hurt to get other opinions and it’s definitely worth it.

[slpdvmmd]

I agree with fireandice123 as his experience is similar to mine. IMO I think now is absolutely the time for PSMA/Pet and if only a few nodes get out of dodge and go overseas to get LU177 +/-Ac225. Radioligand therapy is probably much more effective early and in lymph node disease. You will not get early intervention in USA. It is my understanding Turkey right now has ample "drug" and is affordable (I went to Germany but more problematic now). Would definitely explore options.