Post surgical PSA thresholds with BRCA2

Posted by jaflag @jaflag, Jan 13 11:33am

Hi folks,

I’m wondering if the intervention thresholds for PSA are different for those of us with the BRCA2 mutation. Post surgical pathology showed T3b and Gleason 9. I’ve had undetectable PSA for 3 years. Then PSA of .02 and 8 months later .03. I know those are very low levels but want to stay ahead of it because of possible rapid acceleration due to BRCA2. Anyone starting salvage early due to BRCA status?

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I’ve had prostate cancer for 16 years. I’ve had surgery followed by salvage radiation 3 1/2 years later. I’ve had three more reoccurrences and have been undetectable for the last 26 months. I was a Gleason 4+3. I’ve had to have a metastasis on my spine zapped three years ago. I found out I was BRCA2 about five years ago, That explains why it keeps coming back. I was a pT2c So my cancer wasn’t as aggressive as yours.

At 3 1/2 years, my PSA hit .2. My doctors gave me a 6 Month Lupron shot And two months later, I had 8+ weeks of salvage radiation.

I started ADT full time after a reoccurrence 2.5 years after salvage radiation. 2 1/2 years after that, I became castrate resistant. I was then put on Biclutamide followed by Zytiga, which I was on for 2 1/2 years, but was only undetectable one month in that time.

As an example of how BRCA2 acts. I stopped taking one of the four Zytiga pills To see if it would help with brain fog. In 19 days, my PSA went from .2 to 1. Stopping the ARPI drug was not going to be possible with BRCA2.

After 2 1/2 years of Zytiga, I switched to Nubeqa And also switched from Lupron to Orgovyx. Nubeqa Has worked really well and that’s why I have been undetectable for 26 months. I know I can’t stop that drug or my PSA will rise quickly. I did stop Orgovyx For eight months while I was on Nubeqa. My testosterone went up to 50 but my PSA stayed undetectable. Because of the BRCA2, my oncologist had me go right back on Orgovyx.

When Nubeqa Stops working I will go on a PARP inhibitor. My oncologist has held off my going on a PARP inhibitor because they are so hard on the body. I got paid to review one of the PARP drugs documentation, and there were warnings in there about what to do when white blood cell, red blood cell, and platelets counts started going down dramatically. Many people end up with anemia as a result of it, and have to get blood transfusions.

Hopefully, you can get a feel for the risks of BRCA2 from what I have said.

You asked about whether you should get adjunct radiation and not wait for salvage radiation. Here is the opinion of a renown doctor as to when you should have adjunct radiation. She says you should have at least two of these risks and you already are a Gleason nine and pT3b so you would qualify. I’ve included the article so you can read about it that more specifically.

Dr. Efstathiou concluded as follows:
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur

Here is a link to the article supplied by @surftohealth88 originally
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html

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Good question and @jeffmarc gave you loads of info to digest.

@jaflag, did you ask your doctor the same question? What did you learn? How are you doing?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Good question and @jeffmarc gave you loads of info to digest.

@jaflag, did you ask your doctor the same question? What did you learn? How are you doing?

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@colleenyoung, I actually had my follow up appointment today. I go to Mayo Phoenix. I have to say I'm disappointed in my provider. I just feel that they don't seem to be concerned about my high risk (pT3b, Gleason 9) pathology or my status with BRCA2. They want to apply the same standards to my situation (no action until two consecutive PSAs of 0.2. I let the provider know that I wasn't waiting until then. I asked for a referral to a medical oncologist with some genetic knowledge and was told they really didn't have anyone. I'm already searching for another opinion but will likely have to travel out of state, unfortunately.

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Profile picture for jaflag @jaflag

@colleenyoung, I actually had my follow up appointment today. I go to Mayo Phoenix. I have to say I'm disappointed in my provider. I just feel that they don't seem to be concerned about my high risk (pT3b, Gleason 9) pathology or my status with BRCA2. They want to apply the same standards to my situation (no action until two consecutive PSAs of 0.2. I let the provider know that I wasn't waiting until then. I asked for a referral to a medical oncologist with some genetic knowledge and was told they really didn't have anyone. I'm already searching for another opinion but will likely have to travel out of state, unfortunately.

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@jaflag Totally get your concern and understand your need to be proactive with BRCA2.
However, I posted an article today (NEW BLOOD TEST) and in it you can find links to other Duke studies; one of them had a short blurb about BRCA2 and how it relates to PCa.
New to me was the fact that not all men with BRCA2 go on to have the most aggressive cancers - many do not.
So perhaps that new blood test at Duke which tests for future castrate resistance/poor prognosis is the one you need to see how aggressive you need to be with your treatment. Hope that helps,
Phil

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Profile picture for jaflag @jaflag

@colleenyoung, I actually had my follow up appointment today. I go to Mayo Phoenix. I have to say I'm disappointed in my provider. I just feel that they don't seem to be concerned about my high risk (pT3b, Gleason 9) pathology or my status with BRCA2. They want to apply the same standards to my situation (no action until two consecutive PSAs of 0.2. I let the provider know that I wasn't waiting until then. I asked for a referral to a medical oncologist with some genetic knowledge and was told they really didn't have anyone. I'm already searching for another opinion but will likely have to travel out of state, unfortunately.

Jump to this post

@jaflag
I also have BRCA2. Found out about it about six years ago. First diagnosed 16 years ago. Had surgery and when it came back 3 1/2 years later, had salvage radiation. Had two more reoccurrences And been on Zytiga. Became castrate resistant while on Lupron. Have been on Nubeqa For almost 3 years and I’ve had 26 months undetectable.

When what I’m on right now fails I will take a PARP inhibitor. Those drugs are really hard on the body and causing an email in a lot of people so they are the last resort for some people.

UCSF has a BRCA education workshop on February 17th. Here is a link if you want to attend. Just sign up with this link.
https://ucsf.co1.qualtrics.com/jfe/form/SV_9M3KLAIroZrEVGS
Ancan.Org Has a meeting every quarter for people with genetic problems like BRCA. You can go to that site and sign up. They have a lot of meetings for people that have prostate cancer all different levels.

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Profile picture for heavyphil @heavyphil

@jaflag Totally get your concern and understand your need to be proactive with BRCA2.
However, I posted an article today (NEW BLOOD TEST) and in it you can find links to other Duke studies; one of them had a short blurb about BRCA2 and how it relates to PCa.
New to me was the fact that not all men with BRCA2 go on to have the most aggressive cancers - many do not.
So perhaps that new blood test at Duke which tests for future castrate resistance/poor prognosis is the one you need to see how aggressive you need to be with your treatment. Hope that helps,
Phil

Jump to this post

@heavyphil I’ll check that out. Thanks.

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Profile picture for jeff Marchi @jeffmarc

@jaflag
I also have BRCA2. Found out about it about six years ago. First diagnosed 16 years ago. Had surgery and when it came back 3 1/2 years later, had salvage radiation. Had two more reoccurrences And been on Zytiga. Became castrate resistant while on Lupron. Have been on Nubeqa For almost 3 years and I’ve had 26 months undetectable.

When what I’m on right now fails I will take a PARP inhibitor. Those drugs are really hard on the body and causing an email in a lot of people so they are the last resort for some people.

UCSF has a BRCA education workshop on February 17th. Here is a link if you want to attend. Just sign up with this link.
https://ucsf.co1.qualtrics.com/jfe/form/SV_9M3KLAIroZrEVGS
Ancan.Org Has a meeting every quarter for people with genetic problems like BRCA. You can go to that site and sign up. They have a lot of meetings for people that have prostate cancer all different levels.

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@jeffmarc I think we’ve met in one of those AnCan groups. Thanks!

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Profile picture for jeff Marchi @jeffmarc

@jaflag
I also have BRCA2. Found out about it about six years ago. First diagnosed 16 years ago. Had surgery and when it came back 3 1/2 years later, had salvage radiation. Had two more reoccurrences And been on Zytiga. Became castrate resistant while on Lupron. Have been on Nubeqa For almost 3 years and I’ve had 26 months undetectable.

When what I’m on right now fails I will take a PARP inhibitor. Those drugs are really hard on the body and causing an email in a lot of people so they are the last resort for some people.

UCSF has a BRCA education workshop on February 17th. Here is a link if you want to attend. Just sign up with this link.
https://ucsf.co1.qualtrics.com/jfe/form/SV_9M3KLAIroZrEVGS
Ancan.Org Has a meeting every quarter for people with genetic problems like BRCA. You can go to that site and sign up. They have a lot of meetings for people that have prostate cancer all different levels.

Jump to this post

@jeffmarc
My voice recognition really screwed up and I unfortunately didn’t have time to reread,

This should have read
“ When what I’m on right now fails I will take a PARP inhibitor. Those drugs are really hard on the body and causing an email in a lot of people so they are the last resort for some people.”

When what I’m on right now fails I will take a PARP inhibitor. Those drugs are really hard on the body and cause anemia and a lot of people, So they are the last resort for some people.

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