1. < Prostate Cancer

PET results

Posted by albcan @albcan, Nov 26 8:03am

I am scheduled for RARP at the end of Dec in about a month. Just did the PET scan and and found out it has spread to the left pelvic sidewall external iliac lymph node as well as the bilateral distal external iliac lymph nodes on the left and right.

We are waiting to go over the results with the Dr but was wondering if anyone has any knowledge on this and if it changes the surgery options or will add radiation or if those lymph nodes are taken out at the time of surgery anyways and it doesn't really change the situation very much. I appreciate this is a support and information group not doctors but was checking to see if anyone had similar situations or information about these results to share.

Thanks Very Much

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heavyphil | @heavyphil | 6 days ago

Welcome to the Club! Did not have your situation but in all probability you will be placed on ADT (androgen deprivation therapy) after surgery and then have salvage radiation after healing to the prostate bed, pelvic nodes and anywhere else your RO recommends.
I know it sounds ominous and overwhelming right now but just know that your situation is not unique or uncommon and treatment will probably be successful. Best of luck to you, my friend.

REPLY
1 reply
kujhawk1978 | @kujhawk1978 | 5 days ago

Familiarize yourself with terms like the staging system and systemic and micro-metastatic disease advanced prostate cancer.... Those help shape treatment decisions. The PET scan sees some, not all though, of the cancerous sites.

Discuss with your medical team - an oncologist, radiologist and urologist, but there are options.

It is possible for the urologist to remove the prostate, and those lymph nodes identified in the PET scan, your urologist can discuss that with you.

Systemic generally requires ADT for some defined period, some "forever" though those with lymph node only, not bone or organ involvement may be able to do intermittent, discuss with your oncologist (and urologist).

Micro-metastatic generally is associated with imaging, indicating too small to be seen by PSMA PET imaging, doesn't mean prostate cancer isn't there. Let's not get started on things like SUV Max, PSMA Avid...

Discuss with your radiologist whether or not they can treat say the prostate bed after surgery and the whole pelvic lymph node region.

An oncologist should also be consulted as you discuss doublet and triplet therapy which may include ADT, an ARI, Chemotherapy

https://connect.mayoclinic.org/member/00-153c33197d8a889a373320/ is saying the same thing as I am. Yours is advanced PCa, making treatment decisions more complex, required an integration of care between your medical team.

Start with understanding the staging system, here's one link - https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/prostate-cancer-stages

Then, familiarize yourself with guidelines such as the NCCN - https://www.nccn.org/patients/guidelines/content/pdf/prostate-advanced-patient.pdf

I say this so you can be an active participant in your treatment decisions and have sound discussions with your medical team. I have developed rules for myself and my medical team over these last 10+ years that have served me well. This is the one you may want to consider:

"I walk in the door ready to start the conversation at level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what. I already know. I can have an intelligent discussion about the merits of a particular treatment for my cancer, my likelihood of, and risk of side effects."

Kevin
REPLY
1 reply
albcan | @albcan | 5 days ago
In reply to @heavyphil "Welcome to the Club! Did not have your situation but in all probability you will be..." + (show)
@heavyphil

Welcome to the Club! Did not have your situation but in all probability you will be placed on ADT (androgen deprivation therapy) after surgery and then have salvage radiation after healing to the prostate bed, pelvic nodes and anywhere else your RO recommends.
I know it sounds ominous and overwhelming right now but just know that your situation is not unique or uncommon and treatment will probably be successful. Best of luck to you, my friend.

Jump to this post

Thank You So Much,

This is all new to me as I guess it is to everyone at first and a little overwhelming. I appreciate this forum and being able to learn from others and get pointed in different directions to learn more and get educated, it seems easier to deal with knowing what some of the next steps or path is going to like like.

Anyways Thanks Again

Happy Thanksgiving to you and yours!

Al

REPLY
albcan | @albcan | 5 days ago
In reply to @kujhawk1978 "Familiarize yourself with terms like the staging system and systemic and micro-metastatic disease advanced prostate cancer......." + (show)
@kujhawk1978

Familiarize yourself with terms like the staging system and systemic and micro-metastatic disease advanced prostate cancer.... Those help shape treatment decisions. The PET scan sees some, not all though, of the cancerous sites.

Discuss with your medical team - an oncologist, radiologist and urologist, but there are options.

It is possible for the urologist to remove the prostate, and those lymph nodes identified in the PET scan, your urologist can discuss that with you.

Systemic generally requires ADT for some defined period, some "forever" though those with lymph node only, not bone or organ involvement may be able to do intermittent, discuss with your oncologist (and urologist).

Micro-metastatic generally is associated with imaging, indicating too small to be seen by PSMA PET imaging, doesn't mean prostate cancer isn't there. Let's not get started on things like SUV Max, PSMA Avid...

Discuss with your radiologist whether or not they can treat say the prostate bed after surgery and the whole pelvic lymph node region.

An oncologist should also be consulted as you discuss doublet and triplet therapy which may include ADT, an ARI, Chemotherapy

https://connect.mayoclinic.org/member/00-153c33197d8a889a373320/ is saying the same thing as I am. Yours is advanced PCa, making treatment decisions more complex, required an integration of care between your medical team.

Start with understanding the staging system, here's one link - https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/prostate-cancer-stages

Then, familiarize yourself with guidelines such as the NCCN - https://www.nccn.org/patients/guidelines/content/pdf/prostate-advanced-patient.pdf

I say this so you can be an active participant in your treatment decisions and have sound discussions with your medical team. I have developed rules for myself and my medical team over these last 10+ years that have served me well. This is the one you may want to consider:

"I walk in the door ready to start the conversation at level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what. I already know. I can have an intelligent discussion about the merits of a particular treatment for my cancer, my likelihood of, and risk of side effects."

Kevin

Jump to this post

Hi Kevin, Thanks so much for all this information and a good logical systematic approach to dealing with this it’s especially helpful as we know we’ll be moving on to a longer journey then we thought originally. The resources you’ve shared are fantastic and me and anyone else you took the time to share with are lucky that a forum like this exists and that there are people like you willing to share experiences knowledge and resources. I feel much more educated and prepared after just one thoughtful and considerate post from you. Happy Thanksgiving to you and yours and Thanks Again for all the information.

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kujhawk1978 | @kujhawk1978 | 5 days ago

That's what these forums are for, share our experience and lessons learned.

The Prostate Cancer Foundation offers a wealth of information too - https://www.pcf.org/

You can do an internet search for Dr. Kwon and his series of videos, I went to him in 2017 when others on my medical team were mired in standard of care treatment and were unwilling to venture outside of it.

Both daughters are home for Thanksgiving along with one boyfriend so it will indeed be a great Thanksgiving.

Back at you!

Kevin

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