New To This: My Gleason 9 prostate... - Advanced Prostate...

Advanced Prostate Cancer

22,075 members27,703 posts

New To This

Pelican8020 profile image
10 Replies

My Gleason 9 prostate cancer was discovered last month by a CT scan checking on the size of my abdominal aneurysm. Some nearby nodes seemed to also be present. My urologist took 12 biopsies, and now wants to do a PSMA HEP scan. Waiting for my insurance to do a pre-approval. Frustrated by a full week of waiting for a response. I have hurried it along from my doctor's office to my insurance, and my insurance to their subcontractor.

Any similar experience or suggestion?

Written by
Pelican8020 profile image
Pelican8020
To view profiles and participate in discussions please or .
Read more about...
10 Replies
Tall_Allen profile image
Tall_Allen

Get a bone scan/CT while you're waiting. If it is negative, it may make little difference what your PSMA PET scan says. Where exactly were the enlarged lymph nodes? Recent evidence is that even lymph nodes as high up as the para-aortics may be curable:

redjournal.org/article/S036...

redjournal.org/article/S036...

Consider this clinical trial:

clinicaltrials.gov/ct2/show...

Scout4answers profile image
Scout4answers

Very similar to my situation... Slow down and take a deep breath , learn as much as you can about what you are dealing with. You have weeks/ months to make your decisions about how to proceed and with whom. PCa is generally a slow moving beast compared to most cancers.You have found a great source of info on the topic. Ask Questions!

Start a weight lifting/ exercise program tomorrow or asap, as your results will be much better over all.

tango65 profile image
tango65

If you are worried about a progression of the cancer meanwhile you wait for the PSMA PET/CT, you could request treatment with Lupron or similar which could put the cancer to sleep for a while.

I would wait for the PSMA PET/CT since it could identify if the cancer is extended outside the pelvis and it is a valuable test to plan the treatment of the primary cancer.

ncbi.nlm.nih.gov/pmc/articl...

Pelican8020 profile image
Pelican8020 in reply to tango65

Thank you. PSMA PETtest was approved today .

Don_1213 profile image
Don_1213 in reply to tango65

Isn't ADT (aka Lupron suggested) contraindicated before a PSMA PET scan?

tango65 profile image
tango65 in reply to Don_1213

Short term ADT may enhance PSMA expression and make lesion easier to detect.

Don_1213 profile image
Don_1213 in reply to tango65

Any published info on this? TIA!

Don_1213 profile image
Don_1213 in reply to Don_1213

Never mind - found some:

pubmed.ncbi.nlm.nih.gov/318...

link.springer.com/article/1...

tango65 profile image
tango65 in reply to Don_1213

There are many articles. It was also my personal experience in 2016. After 4 months of ADT my PSA went down 90 % but a new Ga 68 PSMA PET/CT done at that time showed all the mets and with higher SUVs than the previous Ga 68 PSMA PET/CT done 4 months before. Long term ADT could reduce PSMA expression.

The pharmacy provider associated with my insurance dragged their feet on approving an Eligard ADT injection. I had to get on the phone for more than an hour to break through this impasse after the urology practice had no luck. They had held up this approval for more than a month. No reason at all. I had no trouble getting CT and bone scans approved and taken.

Not what you're looking for?

You may also like...

New here, glad to find this group

Well, here's my story. 66 years old, I was diagnosed back in June after a second biopsy, PSA 330,...

PSMA to possibly be FDA approved in Dec., according to doc at UCLA

My husband Rick and I just got back from a trip to UCLA for a PSMA Scan tonight. We flew there...

Is this a rare event?

Diagnosed in 2006, Gleason 7, failed surgery, failed salvage radiation by beginning of 2007. Saw...

New to this…just saw my PSMA

Howdy all. Let me give you a little back ground. I was having some “back” and stomach issues in...

New to Lupron

Hi, just got my advanced prostate cancer with bone(pelvic) and some lymph involvement a few months...