Troubled state of mind....: It's been... - Prostate Cancer A...

Prostate Cancer And Gay Men

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Troubled state of mind....

cajun1949 profile image
9 Replies

It's been 15 years post op for me. Back in '08 my PSA on 02/07/08 was 0.04.... Six months later 08/11/08 was 0.10, and so forth to ... My present PSA on 11/08/16 is 0.41.... I go back on 03/08/17 for another PSA and will find out results week later on the 15th.. I'm not looking forward to this visit. I've been having lower back pain and feeling tired for some months now. My Doctor did mention salvage radiation few years ago. I'm not sure if I'm going to have it or just watch and wait. My kids have been pushing for me to have the treatments. I am very hesitant to have them done. I lost my younger brother year and half ago from brain cancer. He also had prostate cancer and was doing so well.

Being retired, I would go stay with him and his wife in Atlanta for 2 to 3 weeks at a time, come home for a week to take care of business then go right back. It was a beautiful bonding time. I also watched as he took the radiation and how he suffered through all the pain, just to die in 6 months. Verdict is still out on me taking radiation.

The pump {AUS800) and pee keeping me dry, my kids, and grandchildren and family are the only things keeping me happy these days.

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cajun1949
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Tall_Allen profile image
Tall_Allen

Salvage radiation this long after surgery isn't likely to pile on the side effects. At this point, the bigger question is whether you've already waited too long for it to be useful. While your PSA is still too low for metastases to show up on a bone scan, there are some experimental PET scans that may be able to detect any. The best PET scan is DCFPyL and is free in a national trial that has started to recruit. The next best is Ga-68-PSMA-11. It is available at UCLA for $2,650, and also a few other places (I don't know where you are.) If you can rule out futility of salvage radiation, you may still be curable. Here's an article about current PET scans:

pcnrv.blogspot.com/2016/12/...

cajun1949 profile image
cajun1949 in reply to Tall_Allen

Thanks Allen, It is appreciated... I'll certainly check into those test. It would be so great if we could just sit relax and have a cup of coffee and talk. I just wish there was a group here in my home city to talk with someone face to face.

Tall_Allen profile image
Tall_Allen in reply to cajun1949

What is your home city? I'm in L.A.

cajun1949 profile image
cajun1949 in reply to Tall_Allen

I'm in Lafayette, Louisiana. 135 miles west of New Orleans. Born and raised pure cajun.

Mixture of Mothers side: Bourque and Smith.. Fathers side: Fruge and Guidry.

Tall_Allen profile image
Tall_Allen in reply to cajun1949

I was hoping I knew of a support group near you. One of the top prostate medical oncologists is Oliver Sartor at Tulane. You might want to consult with him. I guess the closest location for the DCFPyL PET scan would be Washington University in St Louis. (contact Barry Siegel)

nacinla profile image
nacinla in reply to Tall_Allen

Hey Allen: What about MD Anderson for those tests? He's only a few hours from Houston.

Tall_Allen profile image
Tall_Allen in reply to nacinla

Not offered at MD Anderson, as far as I know

nacinla profile image
nacinla in reply to cajun1949

Had a great time working two weeks in Lafayette and eating too much boudin and the duck-andouille gumbo at Prejeans a few years back. Reds was ... fun. Hope you find some answers. Nick (in LA, friend of Allen's)

billd9946 profile image
billd9946

I think the new PSMA scan might be a good option for you, and there are trials being offered. I live near Hopkins and consulted with a medical oncologist about this new test. I didn't meet the criteria to participate in the trial, because my PSA is .05 and to participate one must have a PSA of .2 or higher. This test allows detection of cancer much smaller than is identifiable with other scans. The benefit is that any cells/tumors identified can be targeted with radiation, which is much better than the broad brush approach of salvage radiation. Check online for any trials that might be available. Good luck.

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