10th year

[Jvaughan0]

Ten years ago I had my Gleason 9 prostate removed. PSA was .1 for a while. It crept up over .2, and I began taking lupron. The drug brought PSA back down to >.01 for a year or so. As the level started going up again, I received whole pelvis bed radiation, moving PSA to undetectable. After a year or so, PSA started climbing. PSMA scans lit up more lymph nodes. I had a second series of radiation treatments. After a few months, PSA returned, doubling that summer and fall from .2 to .6. My Duke oncologist refused to add a second line of treatment drugs and suggested a third session of radiation to the arotic nodes. Scans showed three slightly glowing avid nodes. After that radiation, frankly I decided Duke's wait-and-see approach might kill me. My PSA was .7 last year. My new oncologist started me on darolutamide and relugolix. This January, my PSA dropped to .2. Today my PSA was >.01 again after more than two years. It has been a journey. Today was the first day in a long time, I left the doctor's office with a smile.

[street-air]

congrats. Here is to more years NED for you.

read with interest as I am gleason 9 (and svi). rp a year ago with 13 lymph nodes removed and checked. undetectable psa so far. Nobody here is telling me I should do anything but am obviously fearful of recurrence which is frankly still likely. with the benefit of hindsight, when psa starts to trend what would you push for? In my situation would you push for adjuvant therapy already?

would you try to get decipher done, somehow. (it isnt available in Australia). I feel like a sitting duck.

[Jvaughan0 in reply to street-air]

So far, you have nothing to treat except your anxiety, and that anxiety is normal. I'm not in a position to advise you on the disease, but you are living in its shadow. Eat healthy, exercise and find the head space to enjoy the day; otherwise, the fear of cancer will mentally destroy you. You do not have detectable disease today. Continue your research on future steps should the disease return, but don't look for clarity in a cloudy crystal ball. I will share my personal journey with you anytime you reach out.

[street-air in reply to Jvaughan0]

thanks I guess am curious to explore - for future reference - the wiggle room in post recurrent treatment as you pointed out Duke was in your opinion being insufficiently pro active. It seems like there is some spectrum available to patients, between cautious and aggressive, even without entering trials? is that your experience?

[Jvaughan0]

My Duke doctor was a very noted oncologist I learned not to trust. He keep his treatment plan to himself and felt no need to share his rationale with me. There are dozens of treatment options today. You can only decide which one might be right for you forbid your cancer return. Jumping the gun is like putting the gun to your head.

[Fiddler2004]

Congratulations 🙏

[jfoesq]

Congratulations! If one is not comfortable with their doc, they should move on- as you did.

[Jvaughan0 in reply to jfoesq]

It was a difficult decision. I selected the doctor based on a good deal of research and felt for a long time I wasn't being fair-minded, or I was second guessing a professional who knew way more than I do. In the end, my decision to change was a good one, aligned with my own thoughts on treatment and has given me so much more peace of mind. As of last week, my PSA has dropped to undetectable again, so I am thankful.