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Treatment options for locally advanced prostate cancer?
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?
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@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?
Arfus,
I’m also being treated at Northwestern in Chicago. Could you please tell me who your surgeon was. Thanks
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.
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.
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1 Reactiontom57, 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.
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1 ReactionHi @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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1 Reaction@hbp How are you doing now? God bless you.
Seasiren. Thanks for asking. I am doing very good and my PSA is still undetectable, 44 months post surgery and 50 months since entering the Erleada/ Lupron clinical trial. Manageable side effects of joint pain and loss of muscle but no complaints here. My UCLA doctor advised that the clinical trial treatment probably gave me 2-3 years for this Gleason 9 guy. After my surgery in June 2022 my prognosis was 4-5 years and the evidence is that I will have a few more years. I am presently 79 and I have gotten my financial affairs in order and adjusted to the fact that I can’t take it with me but enjoying my family my friends and my stuff as long as possible.
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5 ReactionsAll the options you discuss in your post are viable courses of action.
Given the high risk clinical data you describe, doublet therapy may be "under" treating your PCa. I say "under" because it's not wrong and with the SOC guidelines. It may not be aggressive enough.
The addition of chemotherapy is generally used in high volume cases though the high risk nature of your PCa may warrant doing it. I did it in 2017 in conjunction with ADT and WPLN radiation. While I'm high risk albeit low volume, you are "higher" than me!
It was not SOC at the time though two CTs, STAMPEDE and CHAARTED at the time supported it. One urologist said he would not do it, instead he would put me on ADT mono therapy...needless to say, I fired him.
Triplet therapy brought a roughly five year "vacation." Was it the chemotherapy that made that possible, we'll never know but I'm going to say yes...
After my WPLN radiation in July 17 my radiologist was able to do SBRT to a lymph node identified in a PSMA scan in April 2024.
The surgery option seems possible, the theory I guess being to take out the "Mother Ship..!" The side effects are well documented, you just don't know which ones you will get or not. I had no incontinence nor ED, mine was nerve sparing. Many others on this and other forums did not have my experience...
So, my experience is not yours as I started with surgery and when that failed, moved on to other treatments. It's been 12 years since that fateful day and phone call from my urologist with the biopsy results.
My first two treatments were SOC, both failed. Decisions since have been what I call "hybrid," mixing the SOC with treatments emerging from CTs, aggressive but also moderating such as in April 2024 when I did SBRT + 12 months Orgovyx vice SBRT only or SBRT + six months systemic therapy when my oncologist recommended 24 months ADT + ARI.
You are the majority shareholder in making a decision, your medical team is to advise based on their training, education and experience and support.
Kevin
@seasiren, I hope you saw @hbp's reply to you and update here https://connect.mayoclinic.org/comment/1513547/
@seasiren, are you also living with advanced prostate cancer? How are you doing?