1st 68Ga-PSMA-11 PET/CT Interpretation please. Not last

[depotdoug]

My concern & understanding is of the para below; … specifically my “PSMA avid” lit up areas in the last sentence?

1. Where is my cancer in my upper other Lymph Node Chains? Reactive lymphadenopathy or?

Paragraph in question:

“There are PSMA avid lymph nodes along the right common iliac periaortic, and infrarenal retroperitoneal lymph node chains with the largest measuring 1.4 x 0.7cm with a maximum SUV of 8.4. Additional low level activity within the mediastinal and hilar lymph nodes are favored to represent reactive lymphadenopathy.”

Is Pelvic lymphadenopathy telling my MO I've got upper abdomen cancer avid areas or what am I looking for?

[Tall_Allen]

It means that it has traveled beyond the pelvic lymph nodes.

[depotdoug in reply to Tall_Allen]

Is there a way to find where above my Pelvic Lymph nodes? I’d really want to know or maybe I don’t. Questions are streaming in my mind.

[Tall_Allen in reply to depotdoug]

I don't understand your question. They told you which nodes: common iliac, periaortic, infrarenal, retroperitoneal, mediastinal, and hilar. And those are just the ones big enough to show up so far. You can look at an atlas, or just ask your doctor to show you the PET scan images, but I don't know what you will learn that is useful.

[depotdoug in reply to Tall_Allen]

It’s Medical Human atlas look at time.

I’m just intrigued by own body’s organs and intricate connecting system. Yes it’s like I’ve learn a lot about my cardiovascular system with my NSV-tachycardia May2011. AFIB issues 2013-2016, Cryo-ablation, Electrophysiology basics. Urology Neurogenic bladder since 2005, connection between S3 sacral nerve bladder stimulation way up my spinal column to brain, Urethral Stricture cause and surgery repair, super poly neuropathy causes and fixes maybe, acute nephritis, and 2 ICD/pacemaker s and 2 MEDTRONIC interstimulator neurostimulator devices. Time for Med Atlas lymphatic review tonight.

Thxs for your concern Talk_Allen

[ctarleton]

I'm not a doctor, but my reading of this would be a confirmation of disease in multiple lymph nodes beyond the pelvic area. Not what anybody really wants to hear, but it is what it is. About 3 years ago I had a Ga-68 PSMA PET scan that showed about 10 widely spread "hot spots" in a combination of widespread bones and lymph nodes. It only confirmed that "systemic" treatment(s) of some type were the next options for me. I didn't have any very few isolated candidates for surgical or radiation "silver bullets". It took me an emotional while to wrap my heart and head around that. I did feel better emotionally after a next treatment option began to give a good overall response.

Charles

[depotdoug in reply to ctarleton]

Systematic treatments were strong meds like Xtandi or Zytiga or chemo treatments?? Curious.

[ctarleton in reply to depotdoug]

"Systemic" treatments work all over the body as a whole, and are not directed at cutting out, radiating, or poisoning cancer cells in an isolated specific location.

(In my individual anecdotal Stage IV case dating from 2013, I had Provenge in 2016 immediately followed by Xtandi added to my Lupron androgen deprivation therapy (ADT). Had I been diagnosed more recently, I might have had early Zytiga + Prednisone or early Docetaxel chemo added to my initial Lupron ADT, based on the newer Clinical Trials results for Overall Survival at the other end from the studies with names like CHAARTED, LATITUDE, and STAMPEDE.)

(I, too, have developed some episodic Afib in recent years. Have not had to have any hospital "conversions", so far, nor any cardiac "ablation" procedure. Still managing well enough with oral heart rate/rhythm medications daily, and as needed. .... I can certainly empathize. If it's not one thing it's another, huh?)

Charles

[depotdoug]

Yes my Med Oncologist mentioned Xtandi and Zytiga treatments in there newest treatment clinical trials and research projects @ IU Health School of medicine Simon Cancer Center. 1st LUPRON Depot inject 09/10 and more blood labs for starters. My MO strongly favors an aggressive attack plan first then closely monitor track progress or progression elimination of AVID lit up spots. Hope he is right. I have no qualms about being on the greatest and newest Clinical research cutting edge trials/treatments. 68Ga-PSMA-11 was my 1st ever Clinical Research med group I’ve ever been on in my life. Now a part of IU School of Medicine Radiology and Imaging Sciences Research Studies Program.

[ronnie1943]

Hi, my husband had the Pet/scan for PSMA. He was a canadate for the Lu-177 clinicial trial. He was denied the treatment. We were so disappointment, after goi g through all the red tape,updating all test, scans etc. and traveling to get the Pet/scan. He's still on the trial but will be put on Xtandi and will be continuing the Lupron. He's been on the hormone for almost ten years. His PSA is now 500 and t is #10 after being off any treatment for a couple months getting tested for the trial. My husband has bone mets, lymph nodes and some in liver. Hoping the Xtandi will help? He took it years ago after Zitaga...he was not able to tolerate the Xtandi back then..worried!!

Sincere best wishes.

Lynn Pa.

[depotdoug in reply to ronnie1943]

W o w, 500 PSA and trying to get help. I truly appreciate your response Ronnie and wife! I’m one week out for my re-Lupron Depot start. 3rd Times The c h a r m, I hope. I’ve got 11 ?’s for my MO doctor next Tuesday. Managing ADHT “side effects “ are my main Man concerns. I’m really enlisting re-enlisting my PF trainer/coach and a health dietitian counselor behaviorist.

Xtandi or Zytiga are up next on my PCa advanced attack plan .

Will keep you all updated! -7 days.

Doug

[ronnie1943]

Hi Doug, my name is Lynn, husband Sam, last time Sam had a PSA at 500 is when this all started, he then had a huge tumor in his left arm that had wrapped around his arm from his shoulder to his elbow. Operated on it, metal plate and that was ten years ago. Been many bumps in the road since.....

Take care, never give up and never give in. Keep us all posted..

Lynn Pa.

[depotdoug in reply to ronnie1943]

Lynn thanks. I’m exercising right now. Usually get in 2X daily workouts at my Local Planet Fitness Gym. I’ve got to beat Cardiovascular health that I’ve had in 9 years. Yeh had a SCA cardiac arrest May 2011. On my 2nd ICD/pacemaker but my EF ejection fraction% is now a whopping 55%. Good news for an AFIB now AFIB Free 67 yr old guy.

I’m gonna keep Fitness Exercising in my life. I’ve got a Personal Fitness Trainer Coach + a lot whole bunch of My Church Family in Ft Wayne with me! Side effects side effects are so so much disconcerting; but my mind is strong. Let’s keep it that way.

The best of good luck and medical help for your husband Ronnie. Prayers for success comfort and health. Doug

[ronnie1943]

Hi Doug,.... We are going this week down to Jefferson to see Sam's oncologist... He's my husband! Lol!! When I first signed up for This forum, don't ask me why I put Ronnie1943 ? that's my sons name.. Ha! I'd like to change it, but I not to good with all this technology.. I am 75, received an iPad from my daughter in law a few years back and trying to teach myself.

Sam's and myself are still trying to wrap our brains around the fact we were denied the Lu-177... Still part of the trial, but Sam will start Xtandi this week coming, if the pills ever get here??

Prayers for you too Doug.🙏🏻. Never give up and never give in.

Keep all us posted..

Sincere best wishes. Lynn