PSMA Avid

[Spaceman210]

I just had a PSMA Ga-68 scan at UCLA after a number of late-stage systemic symptoms that were evaluated in depth for other things like digestive diseases. My PSA has only been in the 0.1 range so had no prior treatments post-RP almost 10 years ago (G 3+3 or 3+4 depending, and declared "cured". Prominent surgeon had not removed any nodes because he thought not necessary. Well UCLA gave me a CD at the time of exam yesterday, so with no report yet, am seeing my PSMA scans lit up like a bonfire in color all over. Seeing Dr. Dorff at City of Hope on Thurs for only the 2nd time. I wonder what she will propose. Scared to death out & of my mind, so please only positive comments, suggestions or questions if any.

I guess the point of this post is it may be worth the considerable expense to pay for such scans below the research study PSA limit and should do if other things don't seem right.

Jeff

[NPfisherman]

Try and relax....let the Radiologist read the scan...when I saw my Axumin scan I thought more was involved than 1 met lesion... looked like some pooling in my arm vein, but the radiologist said that happened when they inject it in that arm... my MO and RO both said same... Your PSA's have been around .1 or a little higher...

Most likely, you may have localized disease... see the RO and get help... I think I saw you changed your diet... in the meantime, breathe.... do what I do.... Take it a day at a time...

Besides, will driving yourself crazy change the outcome of your visit with the RO...??

Gonna be ok... you are a G6 or G7.... there is a bright side here... You had a long term remission from 2009 or 2010 till now... Be thankful...

All the best

Don Pescado

[Spaceman210 in reply to NPfisherman]

Yes I was wrong indeed. Unremarkable findings.

[MichaelDD]

I did the same thing did mine at UCSF. My lungs just lit up on my CD! After looking at my scan I then called in my wife who is an operating room RN. She said yep it looks like the lungs to me! Had mine on a Thursday that evening I looked that scan over and over again. Next morning my MO called first thing. Yes its more then 10 nodules both lungs. Biggest 10mm. Scary stuff when you can self-diagnose! Scary when you're right. My positive is that lung metastasis ONLY with prostate cancer is rare. With conventional method they probably wouldn't have seen even the first nodules until a year from now. So I'm in the fight now. Where most of the time lungs or visceral have a short life expectancy I'm in the game for hopefully some years according to the UCSF MO that I'm also seeing now also. Look at this scan as hopefully something for our brothers to have in the future. I feel it was a gift that my MO got together with a colleague from UCSF to get me this. Good luck. I know you're worried but at least you understand the fight and you're not punching in the dark anymore.

[j-o-h-n in reply to MichaelDD]

Here I go again.... I'm fighting my Pca and stage IV "melanoma" lung cancer with Keytruda. And it's working. I do know that Keytruda is successful in fighting lung cancer.

Good Luck, Good health and Good Humor.

j-o-h-n Monday 03/11/2019 2:05 PM EDT

[Spaceman210 in reply to MichaelDD]

Thanks I was completely wrong, findings in preliminary report say it was unremarkable.

[Hidden]

Welcome Spaceman210 , I’m no expert but I feel your pain ....10 yrs clear was hopefully nice for you. ..What is your Psa now? Can you read the scans yourself .? I wouldn’t jump yet to negative conclusions . Wait for the Dr. Whatever the talk is let us know .. Our members in the know shall give you more med knowledge than I. I’ve also been undetectable 3yrs now myself . I’m sure that I too will feel as you do if or when things light up or my Psa jumps. The anxiety associated with APC can level us if we give in to it. Maybe and hopefully it’s not as bad as you think. Be careful not to elevate your bp and stress out now . Can you work out? I had a not too nice prognosis originally and so have many of us here . If you need new treatments you will deal with them . Don’t give up on hope .... whatever you believe in - strengthen those beliefs now . You must try to stop APC in its tracks in this upcoming round ..Some have been through 23 yrs of fighting APC and still live with a smile on their face. That’s tenacity ...Anything is possible .. this ain’t no party , this ain’t no disco , this ain’t no fooling around , but welcome to the fight club. Rule number#1 . There are no rules..you’re fighting for your life and happiness . Both equally important in my book . Be well and do something each day to forget about this weight on your mind . I believe it’s good that you found this cite. A lot of compassion and wisdom with experience.. Take it easy dear Sir , you can do as well as any of us ... we’re all aboard the same loving vessel of APC ... Peace

[Spaceman210 in reply to Hidden]

Has been less than 0.2. No but there is yellow-white in spine, nodes in head, many others. I have had profound weight loss and recently anemia (not iron deficient) plus heterogeneous marrow signals on recent MRIs. Had lots of digestive workups prior. Osteopenia in pelvis probably from not eating dairy while still drinking coffee. Yes still work out somewhat. Almost did not have the PSMA after being told nearly no chance of detection. Thanks Lulu

[Hidden in reply to Spaceman210]

I’m sorry . Animia I had that in RT. I went from 233 muscles to 165 skin and bones. I’m at 195 now . Much better . Osteopenia for me also is a fear . My muscles were eaten up my first two years with not lifting over ten lbs . Plus double adt & RT. It’s a fearful disease but my only choice is to survive no matter what comes in the future. Take advantage of anything that makes you smile. Life is now under the microscope for us. Medical practictioners are just that. Practicing..Medicine , human , some with great egos . Hope you get good drs. Keep trucking...

[Spaceman210 in reply to Hidden]

Actually preliminary report said findings were unremarkable. I was completely wrong.

[Hidden in reply to Spaceman210]

Hallelujah , this is one time that unremarkable is gift. Thanks for telling us .. keep moving .... being completely wrong can be good . Ask me I’ve done it much...

[Tall_Allen]

I've met Dr Dorff and think she is very good. You really have to wait for the report. Some of the things you see "glowing" are just background. The report will tell you which, if any, areas have an SUVmax appreciably above the background. I think it was a mistake letting you have the CD with no report and no explanation.

[Hidden in reply to Tall_Allen]

I agree

[Spaceman210 in reply to Tall_Allen]

You guys were right, the report said findings were unremarkable

[Hidden in reply to Spaceman210]

That’s remarkable news..

[Spaceman210 in reply to Tall_Allen]

In a dilemma since with the negative PSMA findings I still have mild anemia, high MCV, MCH, heterogeneous marrow signal on 2 MRIs, but normal B12 folate, thyroid. She keeps saying the abnormalities & large weight loss are not from PCa because of low volume disease.

Also was not the least bit concerned about supplements that could lower PSA as it would still go up with cancer growth. Their GI dietician and a full GI workup with scans at UCLA by Dr. Lin found no causal issues.

Dr. Choi, R.O. consulted at MDA, preferred those issues be traced down before any SRT, which she still wants me to have around 0.2. My usual lab, Qwest, is still below that, while CoH draw with a different method showed only 0.063 the other day. She said nothing else would be diagnostic for my systemic concerns and said just keep checking PSA at 2-3 months, but I just e-mailed her asking how about getting a marrow aspiration/biopsy. Appreciate any other ideas.

[Tall_Allen in reply to Spaceman210]

Do not wait until your PSA rises to 0.2. Why would you do that?

[Spaceman210 in reply to Tall_Allen]

Both Dr. King and Dr. Choi plus three M.O's said to.

[Tall_Allen in reply to Spaceman210]

Did you have adverse pathology and a pattern of rising PSAs?

[Spaceman210 in reply to Tall_Allen]

T2c with PNI and negative margins. Reached 0.1 two yrs ago after 2009 surgery, so yes slowly. CoH regraded slides as 3+4.

[GP24]

It takes a specialized RO to analyse a PSMA scan. I do not attempt to take a look at the CD before I got the report. Even then it is difficult to locate the mets mentioned in the report on the CD. It helps if you make an appointment with the RO and he gives you printouts of the mets he found. This is important when discussing the findings with the doctors you want to treat these mets. These cannot analyse the CD as well or do not take the time for that.

I had five PSMA scans now and the next one is scheduled.

[AdamFaithful]

Jeff,

I am also being seen at UCLA and have gotten 3 PSMA scans with the Gallium Arsenide. My disease had spread to a number of pelvic lymph nodes. I had the same reaction to my first PSMA scan because my scan lit up in a lot of other areas as well. They said that the PSMA uptake occurs in other areas as well but that doesn't mean there is cancer present at those locations. Your report should explain in detail. I wish you the best and stay positive.

Bob