3rd dance with Prostate Cancer

[RTSON1]

I know this is wordy, forgive me.

I got a PSMA-PET scan in January. Showed potential lesion in bilateral ribs. Went to Winship Cancer Center Emory in Atlanta area. Started ADT Lupron and NUBEQA. I wanted to be real aggressive and asked for a Radiology referral. The radiologist sent scan for reevaluation as it was from another site. Had planned to get what looked like only 2 spots radiated yesterday.

Radiologist called me last week, the reevaluation of the scan determined rib lesions most likely NOT Prostate related. But the evaluation which I thought was great news, now seems not so much. Now source of PSA likely in Prostate Bed, which they will not irradiate since it has already been irradiated. They wont do Chemo because its low volume. Looking for some guidance as to future moves, to possibly keep me off of ADT and an enhanced QOL for the rest of my life.

[Tall_Allen]

So you've had salvage radiation to the prostate bed? What is the SUVMax of the prostate bed lesion? Is it possibly just urinary excretion of the radioindicator? What is your PSA ? If it is undetectable, there is no cause for additional therapy.

[RTSON1 in reply to Tall_Allen]

My PSA went from 0.34 to 0.40 in last couple of months. Unfortunately they do not state the SUVMAX. “Within these limitations, there is a small focus of intense tracer activity just to the left of midline in the prostate bed. Given that this finding abuts the inferiormost aspect of physiologic urinary activity, an additional adjacent site of physiologic urinary activity cannot be excluded, but given the focality, location, and slight separation from the bladder activity, this finding is suspicious for a possible site of tracer avid recurrent disease in the prostate bed. If clinically indicated, consider obtaining a POSLUMA PSMA PET/CT with Lasix (which often improves evaluation of the prostate bed given the lower physiologic urinary activity in comparison to other PSMA radiotracers) and/or a MRI of the pelvis for further evaluation.”

But the PSA has to be coming from somewhere.

[Tall_Allen in reply to RTSON1]

There are micromets too small to show up on imaging, although Posluma would have given you assurance. It's immaterial now since you are already taking ADT+Nubeqa.

[RTSON1 in reply to Tall_Allen]

T_A: I was still hoping to be able to kill the beast. And possibly doing Intermittent ADT for my QOL in the future . If the only source of PSA had been outside of the prostate bed, I was hoping radiation could exterminate it. But since it seems to be in the Prostate Bed, is there any other way to knock it out.

[Tall_Allen in reply to RTSON1]

Without Posluma, and it's too late for that, it's impossible to know if the prostate bed uptake is cancer or a false positive. You are doing all you reasonably can to tame the beast, even if you can't kill it.

[RTSON1 in reply to Tall_Allen]

Thanks. Tall_Allen

[street-air]

I was just reading a study that said lone rib suv signs on psma scan were found, in people without any other mets, almost never to be actual cancer. They verified this by doing prostectomy then noting that post rp psa remained non detectable for years and the rib scan did not change for years either.

[sandystarfish in reply to street-air]

My husbands was found post RP now post srt & adt psa remains undetectable. I hope to god the study is right .

[street-air in reply to sandystarfish]

here is the study though the site isnt loading for me atm pubmed.ncbi.nlm.nih.gov/325... maybe JFK JR deleted it to save money

[sandystarfish in reply to street-air]

Thank you

[RTSON1 in reply to street-air]

Thanks got the study to load. He must’ve put it back on the shelf. Interesting I had somewhere between three and five of the depending on the interpretation.

[NanoMRI]

Moves to keep me off of ADT for as long as possible is also my focus. For me, my moves include frequent PSA testing (ultrasensitive as I am post RP) to keep close watch on trend. I also do liquid blood biopsy testing and comparative imaging methods plus mpMRI. My cancer spread to the para-aortic nodes at PSA 0.1 - further than multiple docs thought. All the best!

[wilcoxsaw]

Consider a posluma PET CT, you can read about it on line.

[RTSON1 in reply to wilcoxsaw]

Thanks will do. Head is spinning with so much to unpack

[RMontana]

Sorry to hear this. If you can update your BIO I am interested to see details of your past diagnosis and treatments...it helps me look at my case and map it against the experience of others. Where there is commonality I can then focus on your experience, where it went sideways and better manage my care. That is why I always look at BIO's to see where each of us came from and how we got to the current state of affairs. Regardless, good luck and hope to hear positive things going forward. TNX Rick

PS consider trying lifestyle changes that may slow down the growth of the cancer. I have posted significantly on the use of Sulforaphane and its ability to slow down PSA growth, thereby slowing down PCa growth. I can send links of just check out my site and look at my Posts...drill down to find the ones on Sulforaphane. I have treated myself with supplements and broccoli sprouts for the last 3 years...wont stop until the Big Guy calls me home. TNX2

[RTSON1 in reply to RMontana]

RMontana; I thought I had updated my BIO on Health Unlocked yesterday, it’s very possible I took a wrong turn somewhere along the way. I find the format a little clumsy, so I tried manually putting in as much of the details as I could. I believe you are referring to Broccoli sprouts, I’ve seen some references to that. Since the threat to my existence has gone up a notch, it’s time to re-evaluate. I do lo-carb diet usually less than 20 gm/day. Check my glucose levels daily as I was pre-diabetic fifteen years ago. I take supplements focused on strengthening my immune systems. Am doing resistance training and cardio with stationary bike, trying to ward off muscle loss and weight gain. Thanks for the input. I found this site because my wife was diagnosed with Parkinson’s three years ago, It has been a great resource for us for that, and just learning as much as I can from fellow travelers.

[ron_bucher]

"They wont do Chemo because its low volume." sounds odd to me. I thought chemo works better when volume is low.

No two cases are the same, but I had chemo (docetaxel) at PSA 0.06.

[RTSON1 in reply to ron_bucher]

ron_bucer: they were referring to the size of the lesions in the ribs, not PSA level. But you are correct no two cases are the same.

[ron_bucher in reply to RTSON1]

I still don't understand why "low volume" precludes chemo.

[RTSON1 in reply to ron_bucher]

Me either, I asked for Chemo, they specifically said they don’t do it on small metastases, seems to me it would be easier to kill a little one 😲. I’m going to keep pushing even if I have to switch doctors

[ron_bucher in reply to RTSON1]

Never hurts to add more oncologists to your team and get more opinions on your situation!

[SillyUserName2]

Hi RTSON. You might want to check out Fenbendazole.org and use fenben as a prophylactic.

[RTSON1 in reply to SillyUserName2]

Thanks SUN2

[Teacherdude76]

Please post the osna scan results.

[RTSON1 in reply to Teacherdude76]

Are you refering to PSMA PET scan? Unfortunately I do not have a digital version available.

[Teacherdude76 in reply to RTSON1]

No just wondering what the written results are. In my case NED in my prostate or near by. But a small spot on L2. Was treated with radiation successfully.