Plain English for a layman please!

[Atdabeach]

Not complaining, I know the doctors need their own precise terms and acronyms, but as a patient (even a reasonably educated one), I struggle to interpret what they're telling me in terms that I understand.

The relevant parts of my PSMA PET scan report were:

1. Intense radiotracer uptake at the left greater than right peripheral zones extending from base to the apex of the enlarged and calcified prostate gland, compatible with known malignancy and correlated with lesions identified on prior MRI 6/16/2022.

2. Intense radiotracer activity at conglomerate and discrete lymph nodes located at the left common iliac chain and left pelvic sidewall, compatible with nodal metastasis. PSMA-RADS-5.

3. Prominent retroperitoneal lymph nodes without elevated radiotracer activity including at the aortocaval region. PSMA-RADS-3A. [PSMA-RADS-3A: Equivocal radiotracer uptake in soft tissue lesions such as lymph nodes in a distribution typical for PCa]

4. Note of subtle activity approximating the left seminal vesicle however without convincing involvement, please correlate with prior anatomic MRI.

And the summary of my current status is:

Stage/Diagnosis:cT3bN1M0 (stage IVA), with pre-treatment PSA of 19.5 ng/mL. He has Gleason 5 + 5 disease and regional disease by NCCN classification

I'm currently in my 4th month of ADT (3-month Eligard injections and 1000mg/d abiraterone), initially planned to last 2 years. I'm set to start proton therapy around 2/1/23.

What brought the question to mind (not for the first time) was Tall Allen's comment in another thread about whether a particular case was considered "curable" or only "treatable." I realize that I don't know the answer to that question in my own case. Of course I should and will pose that question to my doctors, but based on the above, what do you folks think?

[GP24]

I am sorry, but a Gleason 5+5 that has spread is not curable. There are patients living with this diagnosis for many years.

[maley2711 in reply to GP24]

Gleason no longer relevant if someone is metastatic. Metastatic is nevr "curable"..though still debate about treating oligometastatic for cure. and I think the exception , if any, would be for true local lymph node metastasis.

[Alturia]

I have also been stagewd as T3bN1M0 with a Gleason of 4+3. I am on Eligard, Abiraterone, and prednisone for 24 months and just started 32 sessions of IGRT. Both my MO and RO have said that the treatment is intended to be curable. Only time will tell.

[Jpl506]

N1 is still considered curable M1 would not be.

[Atdabeach]

Yes, adenocarcinoma.

[Atdabeach]

Thanks for the responses above. I've gotten the impression that curable/treatable is less of a binary distinction and more of a spectrum.

This discussion is beginning to touch on a couple of my additional questions:

- what qualifies as "advanced" PCa?

- how relevant is the distinction between "local" and "distant" metastases?

[cesces in reply to Atdabeach]

"how relevant is the distinction between "local" and "distant" metastases?"

It appears that it's sort of relevant in an imprecise way.

Much better if it's local.

[Tall_Allen]

(1. )Lots of cancer in the prostate.

(2.)Cancer in pelvic lymph nodes and (3) lower abdominal lymph nodes (all of these are potentially treatable with radiation.

(4) possibly also in seminal vesicles, although it's hard to tell for sure because the radioindicator can give a lot of false positives in that area. That's why they also have to look at the MRI.

All of the cancer is within the area treated with EBRT - they give a boost to known affected lymph nodes. And with 2 years of ADT + abiraterone, potentially curable.

[cesces]

Basically none of us are "curable" whatever that means. LoL

[Atdabeach]

Thanks, all! Definitely helps to hear others' interpretations of medical jargon to supplement my own. By the way, I neglected to add that ADT dropped my PSA to <0.1 within a couple of months, and so far I haven't found ADT to be the horrible experience that some have described. For me, it's a matter of fatigue and moderate hot flashes, along with unavoidable issues in the bedroom, but nothing I can't deal with. Next steps are fiducial implants and RT simulation in January, then start proton around 2/1/23.

[FormulaRob in reply to Atdabeach]

My father diagnosis sounds quite similar to yours so far. It sounds like a long life ahead but always will need treatment. Sort of bittersweet I guess.. My father has told me so far what he has learned is that we humans just adapt. Initial shock and a lot of emotions followed by just adapting and learning to live with whatever is thrown our way

[middlejoel]

Back to your original question.... how about less fancy medical terms and a little plain English? I am with you At the beach, which beach?

[Atdabeach in reply to middlejoel]

Rehoboth Beach, Delaware!

[KaChava]

That last part is so true! I too, went through the initial shock of being told that I had cancer, with a whole range of emotions. I too have adapted to my circumstances and gradually life has settled down to this new routine.