waiting but anxious

[thansen535]

had prostatectomy on 9/22. They found cancer is the biopsy’s taken of a lymph node and other tissue taken out. Took a 6 month shot of lupron. Discontinued lupron. Too many side affects. I have not had a detectable psa score since surgery. Contrary to the advice to have radiation targeted to the area of extraction, I am waiting it out. Getting psa checks every 3 months. No plans for additional treatments unless psa becomes detectable. Can’t get psa pet scan without psa score. Maybe I am just lucky?,

[Tall_Allen]

The surgical sample is just a sample. There's a lot more where that came from. Metastases have to grow to a certain size before they put out detectable PSA into the serum. Meanwhile, they spread. If you get it treated with salvage radiation while the cancer is still in the pelvic lymph nodes, it only requires 2 years of adjuvant Lupron. If it escapes the pelvic area or goes to bone, Lupron will be permanent.

[thansen535 in reply to Tall_Allen]

Thanks for your reply. Would radiation treatments eliminate the need for Lupron. Really have trouble with side effects---were making the assumption that cancer is there and perhaps spreading? Is there no way to check?

[Tall_Allen in reply to thansen535]

Whole pelvic radiation is given with 2 years of Lupron. You can try 150 mg/day bicalutamide instead. It is not as effective but you may find it more tolerable (use a tamoxifen patch with it to prevent gynecomastia). Even the most sensitive PET scans can't detect anything smaller than 4 mm. You have to treat what you can't see.

[GP24]

This study showed excellent results of Lupron after RPE. I would wait until the PSA value gets above 0.2 ng/ml and then get salvage radiation including the lymph nodes. A Gleason 3+4 is not a high risk tumor.

ncbi.nlm.nih.gov/pmc/articl...

By the way, you mean a PSMA PET scan and not a PSA PET scan. Your PSA value should be higher to make the PSMA PET scan effective.

[thansen535 in reply to GP24]

Thanks. That’s my plan. Yes, I meant PSMA PET scan. Min of .02 before one can be done. Right or wrong I am going to wait it out. Just Anxious at times.

[Prostateless2020]

I'm in my sixth week of Orgovyx with NO SIDE EFFECTS other than VERY MILD hot flushes at night, where sticking a foot outside the covers relieves it almost immediately. within the first 4 weeks, PSA went from 0.42 to undetectable.

[ChristopherH]

I had very similar case positive node, margins. Had Prosectomy, still had detectable PSA- did radiation, just finished 6 - 3 month rounds of Eligard. Yes it’s no fun but currently undetectable so this next year will my testosterone come back will be the real test. I can’t wait to get some of that T back. I hope yours stays undetectable.

[thansen535 in reply to ChristopherH]

thanks for your reply Chris. Good luck

[Hidden]

I suggest that research and learn about micro-metastasis; then discuss with your prostate cancer pro.

GD

[Moespy]

Which of the Lupron side effects are you finding intolerable?

[cancerfox]

I'm with Moespy. ADT side effects are lousy, I agree with you on that, but the alternative might be far worse. You may be playing Russian roulette by not treating the problem. 🦊

[KocoPr]

I had RP then bio-recurrence then did radiation but declined the short term ADT and now i am on Darolutamide and Orgovyx till they fail then it’s chemo and more radiation . It is playing Russian roulette, and i shot myself in the weener.