Bouncing (?) again :(

Hi All,

Just reaching out for some reassurance -- again! Here are my partner's PSAs after having HDR mono at UCLA. Pretreatment around the 6-7 range.

Treatment 6/2015
9/22/15 - 1.96
12/30/15 - 2.19
3/21/16 - 2.59
6/24/16 - 2.43
9/29/16 - 3.09
1/3/17 - 3.57 (getting seriously nervous here)
4/17/17 - 1.36 (happy!)
8/1/17 - 1.56
11/1/17 - 2.02 (okay, but not so happy)

I'm just not sure what to make of these numbers and the latest rise. I know it's a long way to nadir +2, but... I just wish it would go down, keep going down, and stay there!! (Like everyone else!!) In June of 18 it will have been three years.

Any thoughts? TA?

Warmly,

Mary

Annoying! What does Demanes say? There's a man in my support group following a similar pattern after SBRT. I think the problem is chronic prostatitis, which never really goes away. As long as it fluctuates, he's OK. It's when it rises and keeps rising that one suspects a problem.

If it's driving him crazy, he can always have an mpMRI read by a top radiologist who knows how to read them post-RT, and, if necessary, a biopsy (read by Epstein) of whatever looks suspicious. But everything looks suspicious after radiation, and Gleason patterns get all jumbled, so it would really have to be one of the top ones. They can often identify chronic prostatitis on a biopsy.

I have a couple of thoughts for an MRI...

(1) One would be to have an mpMRI done at Johns Hopkins. Katarzyna Macura was a co-author of PIRADS 2.0, and if she sees anything worth biopsying, Epstein could read it. I think you said you have family in that direction.

(2) I recall you have friends in San Diego, and UCSD has been experimenting with a new kind of MRI called an RSI-MRI. You can read about it here:

/pcnrv.blogspot.com/2016/08/will-restriction-spectrum-imaging-rsi.html

Unlike a mpMRI, an RSI-MRI is unaffected by prostatitis, and is better at identifying Gleason grade and stage. UCSD routinely gives RSI-MRIs to their patients on active surveillance, but I don't know if they'd give it to outsiders because it is experimental. However, they work closely with UCLA, so Demanes may be able to get Daniel Margolis (a co-author on all the RSI studies) to talk them into it. If you want to try a direct route, contact David Karow.

(3) Daniel Margolis at UCLA is a top choice for an mpMRI radiologist if you want to come to LA.

Like Gleason 6, I also had LDR and bounced all over the place (see sig). It was VERY disconcerting and no matter what people told me ("love the bounce" "we bounce" "bounce is good") I just wanted to see it go down! Hopefully, your partners is just experiencing the normal bounce until he goes down, and stays down.

Hang in there.

Mary,
Jeff bounced all over the place and for a long time, see his signature below.
Scary I know, but not uncommon. I remember just wishing it was someone else having that sort of 'not uncommon' at the time!
Sending you calming hugs.
Susan
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