Bouncing (?) again :(

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pjr64
Regular Member


Date Joined Feb 2015
Total Posts : 69
   Posted 11/5/2017 9:10 AM (GMT -7)   
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

pjr64
Regular Member


Date Joined Feb 2015
Total Posts : 69
   Posted 11/5/2017 9:11 AM (GMT -7)   
Sorry -- to add -- he was 3+4 in two cores, total of 8/20 cores positive. The rest were 3+3.
-8/20 cores positive; 6 of 8 3+3; 2 3+4 involvement from 5%-90%

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8785
   Posted 11/5/2017 10:00 AM (GMT -7)   
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.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

pjr64
Regular Member


Date Joined Feb 2015
Total Posts : 69
   Posted 11/6/2017 8:06 AM (GMT -7)   
Hi TA,

Thanks for your response! I would love to go forth with something like this just for peace of mind. John hasn't yet talked with Demanes. He's rather difficult to reach sometimes.

Any suggestions on an top radiologist?

Again, thanks!!

Mary
-8/20 cores positive; 6 of 8 3+3; 2 3+4 involvement from 5%-90%

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8785
   Posted 11/6/2017 10:56 AM (GMT -7)   
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.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 874
   Posted 11/7/2017 11:16 AM (GMT -7)   
Although I had LDR, I had a lot of bounces too. Take a look at my signature. You can also read my running commentary, although it became rather long. Keep the faith.
Click here for My Journey from diagnosis to decision to have seeds
Age 61
PSA 4.3 9/10
PSA 6.73 5/18/11
Biopsy G6(3+3)
Stage T1Cn
8/5/11 87 I-125 seeds.
PSA 6 mo 3.9 2/12
9 mo- 3.2 5/12
11 mo 3.0 6/12
13 mo 2.9 8/12
20 mo- 2.1 3/13
22 mo 2.7 5/13
2.6 9/13
2.8 4/14
2.5 7/14
1.1 11/14
4 yrs 1.0 7/15
0.5 10/15
0.3 9/16

Buddy Blank
Veteran Member


Date Joined Jan 2013
Total Posts : 1394
   Posted 11/7/2017 1:01 PM (GMT -7)   
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.
Biopsy right prostate: Benign tissue
Biopsy left prostate: Prostatic adencarcinoma, Gleason score 7 (4+3), 2 of 10 cores, 5% of total tissue sampled, Stage T1c, positive for PNI
66 Pd-103 seeds implanted 3/13
PSAs: 4.76 5/12 - 4.23 8/12 - 3.98 10/12 - 4.9 2/13 - 2.9 6/13 - 2.7 11/13 - 1.31 3/14 - 1.07 7/14 - 0.69 10/14 - 1.6 3/15 - 2.0 6/15 - 0.64 8/15 - 0.68 4/16 - 0.16 11/16 - 0.12 6/17

pjr64
Regular Member


Date Joined Feb 2015
Total Posts : 69
   Posted 11/10/2017 8:35 AM (GMT -7)   
Thanks so much for these encouraging responses. I really do appreciate it so much. I'm keeping the faith! He has a phone conversation scheduled with UCLA on Monday. I'll post what we learn in case it is of interest to everyone.

Love this forum -- <3

Mary
-8/20 cores positive; 6 of 8 3+3; 2 3+4 involvement from 5%-90%

overthepond
Veteran Member


Date Joined Apr 2011
Total Posts : 645
   Posted 11/15/2017 10:26 AM (GMT -7)   
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
x
Husband's age 68 (62 at diagnosis), excellent health
First PSA test 7. Two months later 11
Gleason 3+3 in two cores (right medial 30% and right apex 90%).
Feb 2011 – Brachytherapy – Iodine 125
3 mth 3.83 - 6 mth 3.18 - 9 mth 1.78 - 12 mth 2.77 - 17 mth 2.31 - 24 mth 3.73 - 27 mth 2.2 - 30 mth 1.1 - 3 years 2.16 - 3¼ yr 1.23 - 3½ yr 2.34 - 4 yr 1.06 - 4¼ yr 0.98 - 5 yr 0.84 - 6 yr 0.24!!

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8785
   Posted 11/15/2017 1:07 PM (GMT -7)   
Mary-

What did Demanes say?
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog
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