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Doctor or Other Recommendations?

Jp2sea profile image
9 Replies

I'm 47. Gleason 4+3. Initial psa of 8.8. I had RP about 5 years ago. Post operation had a psa of 1.1 so I went ADT and then had radiation. My psa dropped, and now it looks like my PSA is being to rise. After a few years of being undetectable, in Nov was 0.04 and last week 0.13. I'm afraid that my PCa adventure isn't over. I have moved to RI and think it would be good to meet with an oncologist in the area, maybe at Dana Farmer. Any suggestions on doctors or other aspects I should consider are welcome. Thanks

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Jp2sea
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Tall_Allen profile image
Tall_Allen

At Dana Farber, you have Christopher Sweeney or Mary-Ellen Taplin, both leaders in their field.

Jp2sea profile image
Jp2sea in reply toTall_Allen

Thanks

Jp2sea profile image
Jp2sea in reply toTall_Allen

And Tall Allen, please let me know if you have any other recommendations for doctors in NY, CT, RI or MA or thoughts on next steps. Thanks

Tall_Allen profile image
Tall_Allen in reply toJp2sea

There's Dan Petrylak at Yale, William Oh at Mt. Sina, Michael Morris at MSKCC, Scott Tagawa at Weill Cornell, and Matthew Smith at Mass General.

When you had salvage radiation, was your entire pelvic lymph node area covered, or did they just hit your prostate bed? There may still be a curative opportunity if they only zapped the prostate bed.

If they already covered all your pelvic lymph nodes, your choices are:

1) Do nothing until something is detectable on a PET scan

2) Start intermittent ADT, perhaps with only Casodex

3) Start intermittent ADT, with Lupron, Orgovyx or similar

4) Start intermittent ADT, with also a second-line hormonal, like Zytiga, Erleada or Xtandi, as in these clinical trials:

meetinglibrary.asco.org/rec...

meetinglibrary.asco.org/rec...

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

clinicaltrials.gov/ct2/show...

Jp2sea profile image
Jp2sea in reply toTall_Allen

Thanks. I need to check back on my radiation treatment. I recall wanting to go big (area and energy), and I think that's what we did. Given that my psa is still only 0.13, I think docs might want to wait until I've have at least one, maybe 2 above 0.2 or higher before starting ADT, but this is new territory for me. My concern is that my T was only 28 last July, and I had been off treatment for over a year I believe. I'm not sure what it is now but it might already be low. I need to better understand the various ADT treatments. Again, Thanks!

Tall_Allen profile image
Tall_Allen in reply toJp2sea

Radiation often temporarily depresses testosterone, even without ADT. It happened to me for about a year.

I agree that it makes sense to see what your PSADT is when your T recovers.

Hey jp! It hits me in the gut seeing such a young man get hit with this so early in life. Keep rolling amigo!

Jp2sea profile image
Jp2sea in reply to

Gracias. C'est la vie.

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Papillon2

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