1. < Prostate Cancer

Treatment options for locally advanced prostate cancer?

Posted by tom57 @tom57, Mar 27 3:11pm

I have recently been diagnosed with locally advanced prostate cancer in December 2023. I had an MRI that diagnosed my PC with a Gleason 9 stage 4a. My decipher score came back very high with a score of one. My PSA at diagnosis was 26.87 and more than doubled over a two month period while I waited for my initial appointment. I’ve also tested positive for the BRAC1 gene. My PSMA Pet scan showed a very enlarged lymph node in my pelvic region with no other spread to other parts of my body. However my MO has told me I probably have microscopic disease that involves other lymph nodes in my pelvic region. My bone scan showed no metastasis. I’m currently taking Orgovyx + Abiraterone that I’ll have to be on for two years. I’m currently trying to weigh my treatment options. My questions to the group are:
1) What type of treatment did group members with locally advance PC pursue, particularly if a lymph node was in involved?
2)Has anyone with a Gleason score of 9 with local spread had surgery and what has the outcome/side-effects been?
3)I’m looking into Radiation options and my radiation oncologist is recommending IMRT that will include a boost to the lymph node that’s involved. If I moved forward with IMRT and it fails, will I be able to do salvage radiation afterwards? Or are my options limited with this type of therapy?
4) I’ve also been looking into Brachytherapy in conjunction with IMRT and have a virtual consult with a radiation oncologist at UCLA next week. Has anyone selected this form of therapy with a lymph node involvement and what has been the sequence of both therapies and the success rate?
5) Finally, because my cancer is so aggressive I was thinking of doing chemotherapy after I finished my selected radiation treatment for the purpose of killing off any microscopic disease. Has anyone tried this following radiation?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1 9:12pm

@tom57, I wanted to check in and see how you are doing. I hope the informative replies from members helped in your decision making. To explore more about the treatment options you're considering, be sure to use the group search function for keywords like IMRT, brachytherapy, salvage radiation, etc. You can access the search for the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/

Have you made your treatment decision? What direction are you leaning?

REPLY
1 reply
tom57 | @tom57 | Apr 3 2:22pm
In reply to @arfus "Had removal surgery @Northwestern Medicine Chicago suburb Apr 2019, 39 radiation sessions, 2 yrs aberaterone. Gleason..." + (show)
@arfus

Had removal surgery @Northwestern Medicine Chicago suburb Apr 2019, 39 radiation sessions, 2 yrs aberaterone. Gleason 9, decipher score .96. PSA was 12.5. One lymph node affected.
PSA was undetectable by July 2019 and has stayed that way ever since. T back up to 415 as of Feb 2023. I’m now 78 and feel very fortunate.
Best of luck to all!

Jump to this post

Arfus,
I’m also being treated at Northwestern in Chicago. Could you please tell me who your surgeon was. Thanks

REPLY
1 reply
tom57 | @tom57 | Apr 3 3:12pm
In reply to @colleenyoung "@tom57, I wanted to check in and see how you are doing. I hope the informative..." + (show)
@colleenyoung

@tom57, I wanted to check in and see how you are doing. I hope the informative replies from members helped in your decision making. To explore more about the treatment options you're considering, be sure to use the group search function for keywords like IMRT, brachytherapy, salvage radiation, etc. You can access the search for the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/

Have you made your treatment decision? What direction are you leaning?

Jump to this post

Colleen,
I’m having my records reviewed at Mayo and have been told I will be connected with a radiation oncologist. I requested to see Dr. Eugene Kwon but I’ve been told I would have to complete my chosen treatment and have my cancer come back before I could see him. I’ve watched many of his presentations through his affiliation with PCRI and wanted his opinion on what would be my best treatment option moving forward. Do you know any way I could get a meeting with him? I’m still considering surgery, brachytherapy/IMRT. I’m currently being treated at Northwestern in Chicago but find the care to be somewhat uneven.

REPLY
2 replies
arfus | @arfus | Apr 3 3:13pm
In reply to @tom57 "Arfus, I’m also being treated at Northwestern in Chicago. Could you please tell me who your..." + (show)
@tom57

Arfus,
I’m also being treated at Northwestern in Chicago. Could you please tell me who your surgeon was. Thanks

Jump to this post

Hi Tom,
My surgery was performed at Central DuPage Hospital in Wheaton. My surgeon, who also remains as my urologist, is Dr Jonas Benson. I can’t sing his praises enough. He’s done about 5 or 6 robotic prostatectomies per month for 10 years at least. I’m so glad I chose him.
Best of luck to you, and if you need any more info, please let me know.

REPLY
lag | @lag | Apr 4 5:18pm
In reply to @tom57 "Colleen, I’m having my records reviewed at Mayo and have been told I will be connected..." + (show)
@tom57

Colleen,
I’m having my records reviewed at Mayo and have been told I will be connected with a radiation oncologist. I requested to see Dr. Eugene Kwon but I’ve been told I would have to complete my chosen treatment and have my cancer come back before I could see him. I’ve watched many of his presentations through his affiliation with PCRI and wanted his opinion on what would be my best treatment option moving forward. Do you know any way I could get a meeting with him? I’m still considering surgery, brachytherapy/IMRT. I’m currently being treated at Northwestern in Chicago but find the care to be somewhat uneven.

Jump to this post

tom57, I am sorry if I misled you. I do remember being told that Dr. Kwon specializes in "failed prostates," an unfortunate term. I would still advocate seeing a Mayo Rochester urologist about your prostate cancer. We don't hope that you will later qualify to see Dr. Kwon, but if you do, you could transfer your case to him. Hang in there and good luck.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 6 6:20pm
In reply to @tom57 "Colleen, I’m having my records reviewed at Mayo and have been told I will be connected..." + (show)
@tom57

Colleen,
I’m having my records reviewed at Mayo and have been told I will be connected with a radiation oncologist. I requested to see Dr. Eugene Kwon but I’ve been told I would have to complete my chosen treatment and have my cancer come back before I could see him. I’ve watched many of his presentations through his affiliation with PCRI and wanted his opinion on what would be my best treatment option moving forward. Do you know any way I could get a meeting with him? I’m still considering surgery, brachytherapy/IMRT. I’m currently being treated at Northwestern in Chicago but find the care to be somewhat uneven.

Jump to this post

Hi @tom57, I agree with @lag. This may not be the right time to see Dr. Kwon. Keep in mind that Mayo Clinic care model is based on a team approach. And that's not in message only. As a teaching hospital, Dr. Kwon's expertise is shared not only with colleagues, but also new doctors in training. The patient is the center of the cancer team around him (or her). While you will have a point person/physician, your case will be discussed by a teams of experts as appropriate.

I look forward to hearing how your appointment goes.

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