Advice on PSAM-PET/MR 3+4=7

Posted by mauk @mauk, 4 days ago

Hello,
New to group. HoLEP on 3/27, biopsy indicates 3+4+7, ref to Oncologist who wants to perform a PSMA PET/MR with and without agent of the Pelvic followed by PSA. My PSA before surgery was 2.03. I am also going to get Decipher testng. Any advice would be greatly appreciated if this is the right course of direction.

Thanks in advance

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

As others have indicated, PSMA PET is the next step to finding out where any recurrence is.
> You indicated that your PSA before surgery was 2.03; what was your PSA after the procedure that prompted you to get a biopsy? What is your PSA now?
> The PSMA PET scan should at least show the 3+4=7 lesion in your prostate. However, if the PSMA PET shows no uptake at all anywhere, remember that up to 15% of prostate cancers don't express PSMA or don't express enough to be detected. If that happens you may have to resort to an older PET. (But, cross that bridge if/when you come to it.)
> Always get a 2nd opinion on a biopsy (or any other test requiring an interpretation of results). A Gleason score is a pathologist's expert opinion on what is seen under a microscope. However, that interpretation is as much an art as it is a science, and two (or more) pathologists can have different expert opinions on a Gleason score. See if a 2nd opinion confirms. If it can be an independent 2nd opinion that would be better. (We had mine sent to Johns Hopkins.)
> Also, have you had a genetic (germline) test to gain more information about the nature of your disease.

Good luck!

REPLY
@mauk

Thanks Jeff-Really appreciate your assistance, Any trustworthy contacts Solan-Kettering?

Jump to this post

I’m sorry I can’t help you with that. If you wanted to come to one of the advanced prostate cancer weekly meetings with Ancan.org I’m pretty sure you could get that answer. Their meetings are held four times a month and next week is a fifth week so they will not have a meeting until April 5 at 9pm eastern.

REPLY
@rice

I had a 3+4 I sent it to Epstein and it cam back 3+3. I transferred to the Nebraska med center they said it was 3+4 then I had a second biopsy and that one came back 3+ 4 so I really don’t know who too believe

Jump to this post

Did you contact the Epstein office to pursue this difference of opinion? There’s probably a very fine line between 3+3 and 3+4 with some slides. Contact their office to find out how they came up with a 3+3 when other places say 3+4. Was there a fine line in some of the slides they saw that they interpreted as 3+3.

REPLY
@rice

I had a 3+4 I sent it to Epstein and it cam back 3+3. I transferred to the Nebraska med center they said it was 3+4 then I had a second biopsy and that one came back 3+ 4 so I really don’t know who too believe

Jump to this post

Had HoLEP (so far so good), biopsy was 3+4=7, oncologist recommended Decipher-PSAMA-PET/MR Pelvic also both with and without regents and then decide course of action..totally confsued!! Age 67

REPLY
@surftohealth88

"Anyone know how the urology staff is at UCSF?"

UCSF - so far SLOW, unresponsive and ambiguous. Had to call about 20 times and still no "second opinion" on pathology or PSMA !!! It has been about 5 weeks since we sent slides for second opinion *eye roll
We called Stanford yesterday just to "ask" about TULSA (probably we are not good candidates but just had enough of being sitting duck ), lady that answered immediately accessed all results and told us that she will present those to comity of 4 or 5 doctors ( I forgot number) and that they will do evaluation and CALL US !?! I was floored ! Like day and night .
Anyhow, maybe you will have more luck. If we were not soooo focused on RP and success rate there for that procedure , we would probably pick up and fold out tent long time ago.

I am especially upset since our slides are now "stuck there" and we wanted to hear third opinion - but we have consultations soon so we will endure *sigh They promised to "digitalize them" and nothing happened in that regard either.

Jump to this post

Go elsewhere. My UC experience was at a sister medical center, UC Sacramento. I thought that the best care would be with a university medical center. I was wrong. 8 months following initial presentation without a diagnosis and not having once seen a urologist. “He is pretty booked up”. Seen by a NP of questionable competency. Went elsewhere, diagnosed within a week with 4+5 and initiated chemo the following week. My read is that the California medical centers are overloaded and understaffed.

REPLY

Definitely go with any diagnostics offered, and if not offered be your own advocate. My PSA never exceeded 4.0. When diagnosed I was 4+5 with metastasis. Chemo and follow up testosterone reduction have been successful to date but do not delay and always consider a second opinion.

REPLY
@rice

I had a 3+4 I sent it to Epstein and it cam back 3+3. I transferred to the Nebraska med center they said it was 3+4 then I had a second biopsy and that one came back 3+ 4 so I really don’t know who too believe

Jump to this post

This is a tough one - Epstein is doyen in his field but 3 other reports place it in 3+4 group ! Everybody can make a mistake so can Epstein. How about you send it to another big center like Hopkins or Mayo ?

REPLY
@mauk

Had HoLEP (so far so good), biopsy was 3+4=7, oncologist recommended Decipher-PSAMA-PET/MR Pelvic also both with and without regents and then decide course of action..totally confsued!! Age 67

Jump to this post

I am sorry, please help me understand why are you confused so we can give some input. You had localized treatment and perhaps they want to make sure that nothing is left behind. I agree, all of those tests should have been done BEFORE any procedure but better late than never. Did you ever ask them for explanation ?

REPLY
@surftohealth88

This is a tough one - Epstein is doyen in his field but 3 other reports place it in 3+4 group ! Everybody can make a mistake so can Epstein. How about you send it to another big center like Hopkins or Mayo ?

Jump to this post

Epstein did d the second option when he was at Hopkins

REPLY
@rice

Epstein did d the second option when he was at Hopkins

Jump to this post

Oh, I see, than maybe some other big center like MD Anderson or Sloan or similar.

REPLY
Please sign in or register to post a reply.