treatment options for paratracheal lymph nodes with BRCA2

I found out I was BRCA2 positive about five years ago. I’ve had prostate cancer for 16 years and I’ve had surgery and radiation and multiple different drugs And four reoccurrences. I had to have a metastasis on my spine zapped a couple of years ago Even though I had been on ADT and an ARPI, But Zytiga didn’t work well for me. It does work well for many other people I know Who have stayed undetectable for many years on it.

Getting off ADT when you have BRCA2 is a real gamble. I’ve been on it for eight years now. I became castrate resistant 2 1/2 years after I started it, but I’m six years past that. I’ve been undetectable for the last 26 months, but that’s because I take Orgovyx and Nubeqa. Nubeqa Has been incredibly helpful. I was on Zytiga For 2 1/2 years and was only undetectable for one month in all that time.

Just to show how aggressive BRCA2 is. When I was on Zytiga, I tried taking only three pills instead of four to see if it would help with the brain fog. After 19 days, my PSA went up from .2 to 1. A 500% increase in 19 days. That’s BRCA2 for you.

You really should get yourself on both ADT and an ARPI drug. A lot of doctors like to start with Zytiga, That could keep your PSA down and your cancer from spreading for a long time. Nubeqa Has almost no side effects and doesn’t pass the blood brain barrier so it doesn’t cause brain fog like all of the other ARPI drugs.

The normal treatment path for a a metastasis is SBRT radiation to zap it. The thing is, we cannot tell you if the metastasis you have can be zapped with that, or if they are too close to areas that could be damaged. You could look into photon radiation, which has a narrower beam and might be able to get to all of your metastasis.

None of your SUV numbers are very high. They would be considered moderately elevated. It could be that just getting on ADT and an ARPI could shrink them down to negligibly noticeable. This is something you really needed to discuss with a doctor.

Whatever you decide, you should be back on the drugs. With BRCA2 you are really taking a chance.

Getting only on ADT will increase your chance of becoming castrate resistant significantly. Recent studies have shown that adding an ARPI greatly extend extends the amount of time it takes to become castrate resistant with ADT. Make sure you discuss this with your doctor.

For your treatment path, first they’ll compare those lymph node SUVmax scores to the SUVmax scores of your blood, liver, and parotid glands to determine the aggressiveness of those lesions.

Then, they’ll figure out next steps.

In your PSMA PET scan report, what were the SUVmax scores of your blood, liver, and parotid gland?

Once again, I applaud Jeff's wisdom!

I read that Zytiga has been replaced by Erleada.

Nubeca has special advantages if the cancer is caused by mutations. My doctor said that after Erleada, Nubeca will be the next step.

In other words, Nubeca is more effective than Erleada against mutation-induced cancer. I'm not a doctor; I read this information online and think I should ask my doctors if this is true.

And of course, the question arises, "For those with high Gleason scores and mutations, should they be prescribed Nubeca right away?" I'm taking Erleada, and I have Gleason score 9 and an ATM gene mutation.

Nubeca has been approved in our country since 2025. Do I really need to knock down my doctor's office door and force him to prescribe Nubeca?

Is there any real evidence that Nubeca works better against cancers with mutations? Thank you!

@denis76
Actually, Dennis Zytiga has not been replaced by Erleada. It is recommended that people go on Zytiga first, Because I can give them a longer time before they have to go on one of the lutamides. I know people that have successfully stayed on Zytiga for five years.

I got 2 1/2 years out of Zytiga, And almost 3 years out of Nubeqa. The extra 2 1/2 years was well worth it for a drug that has more side effects.

There is no mutation advantage to Nubeqa. I know dozens of people that have gone to Nubeqa Because it has fewer side effects than the other two lutamide drugs And doesn’t pass the blood brain barrier, So it doesn’t cause brain fog. Now ADT can cause brain fog, but the ARSI drugs cause even more.

Switching to Nubeqa Only gives you fewer side effects for a drug that pretty much acts the same as both apalutamide and Enzalutamide. That is the reason I know so many people that I’ve switched to it. It has nothing to do with mutations, It’s because it has fewer side effects.

@jeffmarc Thank you. This "ADT holiday" is just that, and I am planning on getting back on ADT*. Last time around I did Eligard and Zytiga and it worked out just fine, the drugs knocked back 25+ lymph nodes with a PSA of 19 to less than 0.1 within 4 months. What isn't clear to me is the rationale of why I would even consider radiation. These new lymph nodes are different from the previous ones, so to your point, with BRCA2, I think it is a losing proposition to take a whack a mole approach, I think I just need to do long term ADT. My team has expressed interest in a PARP, we are meeting on Wednesday. Will report back

@brianjarvis Thank you. The report itself doesn't show the SUVmax scores for the blood, liver or parotid gland, but will surely ask the team on Wednesday.

@edmond1971
The problem with depending on the drugs to handle actual Metastasis is not a long-term solution. The drugs will not last for the long-term and your PSA will start to rise, even though you are on them, and the metastasis will start to grow. Your SUVs were very low so you may not want to even do anything at all about them.

I can’t imagine getting off ADT and having my PSA rise to 19. That just is not careful planning. I know people who have BRCA2 and have gone on vacations and other people who do not have it but are Gleeson, nine who have gone on vacations, and in all these cases, their metastasis have increased dramatically after a second or third vacation. Sounds like a great idea, but it has not worked out well for people I know. I attend nine advanced prostate cancer online meetings every month so I hear from a lot of people.

As for the PARP inhibitor. My oncologist has discouraged my getting on a PARP inhibitor Until the other ADT and ARPI drugs stop working. There’s good reasoning behind this. I didn’t disagree with her because I was paid to review Akeega documentation. That drug includes a PARP inhibitor with Zytiga. The warnings In the documentation, Which my oncologist referred to, We’re pretty eye-opening. The PARP inhibitor causes serious problems with your blood. RBC, WBC and platelets tests can be dramatically reduced resulting in people needing blood transfusions because they are so anemic. It also can cause high blood pressure.

These are things to discuss with your doctors before going on a PARP. I’m staying on ADT and Nubeqa Until it stops working. Then I will take a PARP.

@edmond1971 Dr. Johnson (of Mayo Clinic) talks about all this in his presentation, starting with the scans we’ve all heard about (MRI, bone, & CT scans), and then goes into detail about PSMA PET scans and how the comparisons to blood, liver, and parotid SUVmax scores work: https://youtu.be/JoJomACA5UM

@jeffmarc

\\ I attend nine advanced prostate cancer online meetings every month so I hear from a lot of people

Jeff, why do you think, in the same situations (age, Gleason score, stage) and with roughly the same treatment, metastases grow in some people, while in others they simply remain dormant? What influencing factors would you identify? For example: place of residence, physical activity, diet, obesity, immune system characteristics, certain body factors (for example, prolactinin and insulin compete with testosterone), anything that interferes with testosterone synthesis, and other factors. Which of these are significant for creating a map of recommendations on what should be done and what, conversely, should not be done?

This information needs to be somehow classified, processed, and analyzed, and I think that if conclusions were drawn from this analysis, it would be valuable for those who are sick. There are no universal methods, but there are general patterns.

In my life, I've met people who had recovered from late-stage cancer, and when I asked (I've been very curious since childhood) what they did, they said that first of all, they stopped being nervous, let go of resentments, and started moving frequently, because blood is the river of life, and it is it that brings possible salvation.

I lived life to the fullest, but now I'm so crushed and sad that I've become very withdrawn and gloomy. This suddenly befell me due to a doctor's mistake, who missed important tests. I used to be obsessed with revenge, but lately I've taken the blame. It's hard to understand when nothing indicates a problem and then suddenly it appears with frequent trips to the bathroom.

@denis76
Interesting you should ask this right now. I just found an article about how cancer becomes dormant and what Medical people are doing to try to investigate it. You can read most of the article without signing in. Somebody just passed this information in email to me today.

This is the most comprehensive information I’ve seen about how cancer becomes dormant, and what happens to it when it does become dormant.
https://www.nature.com/articles/d41586-025-04149-3