Will greatly appreciate your perspectives

[tmscat]

Hi,

I've had a bizarre array of health issues over 18 mos., head to toe. All types of labs/imaging & doctors. No major urological issues were involved.

PSA in 3/22 was 2.5 (2.6 in 2020).

11/22 I repeated many labs. PSA elevated to 5. Got MRI -- PiRads 4. Biopsy GL 4+3, PNI, lesion contained, mid-gland.

Urologist and Radiation Oncologist both agreed RP was the best choice for me.

I asked for PSMA -- they both said it wasn't necessary -- that the lesion was very contained, small, and 95% certain scan would show nothing. I asked for PSMA anyway......it showed widespread lesions in the ribs + one in scapular. Surgery was cancelled and I'm now suddenly switched to terminal diagnosis.

I started researching -- this exact combination seems extremely rare: only recently elevated PSA, but I have widespread mets in ribs, but no local spread. Contained GL4+3 lesion. Asymptomatic.

I'm not getting a lot of answers from my doctors---just that's it's unusual, concerning, indeterminate--but that I need to proceed as if it's terminal. (Majority of the lesions are small with lower SUV.)

Part of my concern is that I have all of these other unexplained issues---if I list them all you'd agree it's bizarre. I want to make sure these lesions are not from another cancer or disease.

Prior to the PSMA, a neurologist told me I might have paraneoplastic syndrome -- but my urology/oncology drs. say no.

Has anyone heard of someone with this combination? Any suggestions/perspectives/advice?

Many of my other doctors have advised me to get a second opinion.

Thank you.

J

[tmscat]

should have also mentioned----doctors started me on Orgovyx and want to do EBRT.

[Tall_Allen]

Just how low are the SUVmax in the widespread metastases in your ribs? Are there CT correlates? You may want to get a second opinion of your PSMA PET.

[tmscat in reply to Tall_Allen]

SUVs as follows: PCa--13.4; Ribs--5.0, 3.7, 3.5, 2.8, 2.1, 2.1; Scapular--2.6

Re: imaging:

After PSMA, I asked/got bone scan---but report did not detail---said "several areas of uptake (that correspond to the PSMA)", and gave two "examples" -- and one of those examples wasn't even the correct rib number. (I questioned/they said that notation was a mistake)

I then recalled I got MRI of the chest last year (for a different reason). I called the radiologist for that MRI (a different organization). (I told him the circumstances)---he looked, said he didn't see anything abnormal on that MRI. He commented that would be very unusual progression and spread.

I asked for a repeat of that MRI from my Dr. -- they wanted it done at their facility, so I forwarded previous MRI. Just got it--report says they see uptake in several areas, and they are saying they see uptake on the MRI from last year too. Two concerns here: 1) areas of uptake noted on the MRI were different ribs than PSMA; 2) they are saying they see things on the previous MRI, and original radiologist says there's nothing abnormal there.

(Maybe I'm just frustrated, but I'm slightly concerned that the current radiology facility efforts seem to be focused on trying to corroborate the PSMA instead of objectively focusing on each imaging study independently.)

Another urologist wants to do biopsy; my Dr. says it's too small/can't do it. Everyone is puzzled. I reached out yesterday to the manager of a large radiology practice. They have offered to provide second opinion on all of the imaging---should I do it, or just accept my diagnosis?

Sorry for so many details, Tall. Thank you.

[Tall_Allen in reply to tmscat]

I'm not a radiologist, but those look about the size of background and may be false positives (low SUVmax on ribs are common false positives), especially since there are no MRI correlates. It matters a lot.

It is worth getting a second opinion from a leader in the field of PSMA imaging: Steven Rowe at Johns Hopkins, Thomas Hope at UCSF, Andrei Iagaru at Stanford, or Jeremie Calais at UCLA

[tmscat in reply to Tall_Allen]

got it. thank you sir.

[JWS13 in reply to tmscat]

Get a second opinion!!! You know in your gut your not getting the right information or analysys....It's your life and you dictate the information you get on your illness ...if that means another psma pet, mri, or another urologist and oncologist..even if it's third and fourth opinion...get the information that sounds informative but mostly sounds true to your 'GUT" !!!.. I wish you the best in this struggle..

[MrG68]

Wow, sorry to hear that. What a blow.

I’d have no issues getting a 2nd opinion or even a 3rd.

[tmscat in reply to MrG68]

thank you MrG.

[witantric]

Sorry about the disheartening news. I would try to get a second opinion from a MO who specializes in prostate cancer, and preferably one at a COE. My friend consulted Dr. Dorff (sp?) few years back and it was a game changer. He is doing very well with his stage 4 PC, and just beat me in tennis singles.

[tmscat in reply to witantric]

thank you!

[RMontana]

…your case exposes, why the standard of care must include a P SMA, PET, before any treatment. I see a lot of cases where doctors or oncologist want to proceed thinking that no scan is necessary. Do additional research, but from what I understand of this scan it’s specificity is very high. If it finds a tumor, it is prostate cancer. The sensitivity may be an issue, but specificity from what I understand is not. If that scan found a tumor, it is prostate cancer.

But continue to look and certainly get other opinions. If it were me, I would proceed with treatment. as you see the one bad thing with prostate cancer is if you delay too much and try to square the circle time can go by and then your treatment options are reduced. Time is of the essence.

[tmscat]

thank you RM. Agree. Takes time to get a 2nd opinion, especially from a top Dr./facility. Appreciate your perspective.

[GoBucks]

I don't have your other unknown issues but otherwise a similar diagnosis. However, my bone metastasis was found after my surgery. Probably would have been found if a PSMA scan was readily available in 2017. The surgery pathology upgraded my Gleason score to a 9. I am certainly not terminal & I doubt you are either, as least from prostate cancer anytime soon. I responded well to lupron & zytiga plus you can add docetaxel to the mix. (triplet therapy) I hope you respond as well as me.

[tmscat in reply to GoBucks]

thank you. Sounds like you are doing well, and that's great to hear. Appreciate your response!