MDA has some ‘splainin to do!

We received the pathology report from JH this morning which was our third opinion.
Great news! They concur with the original diagnosis of G6. In fact, they downgraded one core to atypical cells suspicious of carcinoma.
we are breathing a huge sigh of relief.

BUT, I want an explanation from MDA.
How did they see G8 4+4?
Im going to upload this report from JH to the MDA portal and demand a response.

Next up is a 3t MRI followed by an Artemis fusion guided biopsy next month at MDA. Hopefully it will confirm G6 and we can go back to our original plan of AS!

Well, that was a scenic side trip -- to Hell ! By all means follow this up with MDA. I was under the impression that path findings were reviewed by at least one other person before a report goes out.

Please let us know what you hear back, star! I wonder if MDA will stick to their guns or not (we're not talking about a 4+3 vs a 4+3). You may get a quicker response if you add something along the lines of "I'd just like to know what you'd like me to post the to many interested folks on the Prostate Forums where I'm active."

That is very, very good news! Congrats

Djin

Post Edited (DjinTonic) : 2/4/2020 7:42:10 AM (GMT-7)

I'm hoping this has been a very unusual experience with a poor pathology report. MDA is a world class facility, and it is alarming to see it, rather than one doctor, painted so negatively.

IMHO, people shouldn't be discouraged from going there.

Congrats on the G 3+3 confirmation.

Great example of getting second (or third) opinions - regardless of how well regarded the doctor or institution.

Congratulations!

I guess Epstein is never wrong

I may be able to shed some light on this situation, although my information relates back to the 2008 era when I had my prostate removed at MDA. By the way, in 2008 AS was practically non-existent; the issue was simply surgery vs. radiation:

1. Epstein read my biopsy slides in 2008 as Gleason 3 + 3. When I switched my treatment to MDA, their pathology department read the same slides as Gleason 4 + 3. When I asked my MDA urologist about the difference, he said (according to my notes), "My pathologist grades papers very tough. Don't worry about it."

2. In 2007 an MDA pathologist described the MDA Gleason scoring protocol as follows: "The assigned histologic grade for the specimen was that of the dominant tumor focus, except for dominant transition zone tumors of lower histologic grade than peripheral zone foci; in those specimens, the assigned grade was that of the peripheral zone focus with the highest Gleason score." Nakanishi et al., "A Nomogram for Predicting Low volume/Low grade Prostate Cancer," 110 CANCER 2441, 2442-3 (American Cancer Society 2007). I have no idea whether this protocol is still used by MDA in 2020.

Best,

Zen9

When two things do not agree it means either:

1) The first guy was wrong
2) the second guy was wrong
3) They are both wrong



People make mistakes.

If you have two people saying G6 give the MDA guys a chance to correct. There may be some process error on their part that needs to be looked at.

None of this stuff is black or white, it's all subjective. That includes PSA, biopsy result, surgical path, MRI, various scans or whatever test you've heard of.
The difference between a Geason 3 and 4 under a scope is tiny. In spite of years of training the pathologist regularly see's 3.5's. Usually he/she doesn't toss the coin in front of the patient but a decision has to be made.
He/she could say 3 and risk under treatment or say 4 resulting in unnecessary Tx with it's concomitant side effects.

Carl

justwondering said...
None of this stuff is black or white, it's all subjective. That includes PSA, biopsy result, surgical path, MRI, various scans or whatever test you've heard of.
The difference between a Geason 3 and 4 under a scope is tiny. In spite of years of training the pathologist regularly see's 3.5's. Usually he/she doesn't toss the coin in front of the patient but a decision has to be made.
He/she could say 3 and risk under treatment or say 4 resulting in unnecessary Tx with it's concomitant side effects.

Carl

THIS

No, F8, he can be wrong, just like anyone can. Someone else pointed out that with 2 G6 opinions, and with one G8, this is possibly the worst place to be. If he is a real G6, with a good chance of going AS and having a long haul of no intervention, then life is good. If he is really a G8, then treatment needs to start NOW, and it needs to be aggressive and immediate. No middle ground.

Rather than sniping about it, let's ask the question--what would "I" do in this scenario. I can't imagine the nightmare the OP is living. If this were me, I might...

Take the third report to my docs at MDA and say, ok, here we are. What now?
Get that MRI and Genomics test
Maybe another PSA to see if it is changing and how fast (this would tend to confirm the G8)
And then, I would make a decision and pray that it was the right one

To the OP--this is the toughest treatment decision I've seen in this forum for a while. All any of us can say is to try to be at peace with the uncertainty and make the best decision you can. We are all still here for you.

halbert said...

justwondering said...
None of this stuff is black or white, it's all subjective. That includes PSA, biopsy result, surgical path, MRI, various scans or whatever test you've heard of.
The difference between a Geason 3 and 4 under a scope is tiny. In spite of years of training the pathologist regularly see's 3.5's. Usually he/she doesn't toss the coin in front of the patient but a decision has to be made.
He/she could say 3 and risk under treatment or say 4 resulting in unnecessary Tx with it's concomitant side effects.

Carl

THIS

No, F8, he can be wrong, just like anyone can. Someone else pointed out that with 2 G6 opinions, and with one G8, this is possibly the worst place to be. If he is a real G6, with a good chance of going AS and having a long haul of no intervention, then life is good. If he is really a G8, then treatment needs to start NOW, and it needs to be aggressive and immediate. No middle ground.

Rather than sniping about it, let's ask the question--what would "I" do in this scenario. I can't imagine the nightmare the OP is living. If this were me, I might...

Take the third report to my docs at MDA and say, ok, here we are. What now?
Get that MRI and Genomics test
Maybe another PSA to see if it is changing and how fast (this would tend to confirm the G8)
And then, I would make a decision and pray that it was the right one

To the OP--this is the toughest treatment decision I've seen in this forum for a while. All any of us can say is to try to be at peace with the uncertainty and make the best decision you can. We are all still here for you.

We totally get that everything is subjective. It’s usually not SO subjective to have two people see nothing but 3+3 and another skip 3+4 and 4+3 and go straight to 4+4. We did receive a message from the Doctor at MDA this morning saying he has asked the pathologists to weigh in on the discrepancy and also pointed out that tumor grading is subjective. My frustration is that we were told at the appt in December that they had asked their pathologist to take another look to confirm their findings as they were all quite surprised by such a large discrepancy. We were told they had not yet heard back. We wrote messages a couple of times to a couple of different people after asking whether they had ever heard back from the pathologists and if they still stood by their diagnosis of G8. We never did receive an answer. Eventually, I gave up asking as by that point we wanted the slides sent to JH. I also understand they deal with tons of patients and a lot of heavy stuff and they have to remain clinical. This is everyday stuff to them and not that big of a deal since we have another biopsy scheduled in March. For US, however, this was a huge gut punch and has caused us a ton of stress and anxiety over the last six weeks.

I’m sure Epstein can be wrong occasionally. We looked at it like we could end up with one of two scenarios. Epstein would concur with either the G6 or the G8 and be the “tie breaker” or he could come up with something in the middle. I’m really glad the latter didn’t happen giving us a third diagnosis! Yikes, that would have made my head spin.

Halbert, thank you very much for your very kind post. I appreciate the understanding. We did have the OncoDX genomic testing. It came back with a low risk score of 23. That definitely leans more towards supporting the G6 diagnosis. I never put much stock I to that as it was only looking at 4 tiny cores of tissue that were graded at G6 so I wouldn’t have expected anything other than low risk. After the MDA diagnosis, that test became a little more meaningful.

Lastly, (because my signature doesn’t seem to be posting even though I’m checking the box to include it), they ran a PSA at MDA on 12/16. The result was 6.2. His biopsy was 9/30. His PSA’s prior to biopsy were between 4.1 and 4.8 (different labs, different days). One run by the uro, one by 4K score lab, and one by us because we wanted PSA total and free. The doctor at MDA was not concerned. I’m sending him to the lab this week for another because we are curious as to whether it’s come back to down to pre-biopsy numbers.

Hi Star. Be prepared also that the fusion biopsy may confirm the G6, but come back with data that makes hubby a less-than-ideal candidate for AS -- be it the number of lesions, max. % PCa in a core, etc. I'm thinking that the greater the number of cores, the high the probability you may run into this.

Looking at the Oncotype, low risk -- (I assume for met potential ?) results you posted elsewhere, it says "High Grade Disease 14%." That really isn't very different from the risk of high-grade in the general population.

Also, you sig. elsewhere has "Maximum % of tumor in positive cores - 60%" but 40% is the highest I see in one of the 4 individual cores. What data did Epstein have in his report?

Hoping everything works out for AS,

Djin

Good Morning Star0210, I usually don't like to comment on something that I haven't experienced but I don't like all the quibbling that's going on lately on HW that's why I haven't been on here very much anymore. I really appreciate the sensible advice that Halbert gave you. I think your decision to wait for another biospy is right on it will only be a couple of months you have made a decision that you both agree on. If it turns out that you have to follow the PCa treatment journey making a decision between yourselves and your medical team become very important! If it turns out G-8 then you will definitely know that you will be starting that journey, if it turns out G-6 well then that will require a different journey hopefully AS but maybe not. One thing you do have to remember is that PCa is a slow growing cancer. My great team at the Mayo who are some of the best in the world emphasized this when I was diagnosed G-7 after my biopsy. MDA has a great reputation and hope that you just had a one time bad experience with them. I would definitely put a lot more stock in their opinions then a bunch of amateurs on a forum! including me! Wishing you the very best and here's to a low gleason score!!

Larry

DjinTonic said...
Hi Star. Be prepared also that the fusion biopsy may confirm the G6, but come back with data that makes hubby a less-than-ideal candidate for AS -- be it the number of lesions, max. % PCa in a core, etc. I'm thinking that the greater the number of cores, the high the probability you may run into this.

Looking at the Oncotype, low risk -- (I assume for met potential ?) results you posted elsewhere, it says "High Grade Disease 14%." That really isn't very different from the risk of high-grade in the general population.

Also, you sig. elsewhere has "Maximum % of tumor in positive cores - 60%" but 40% is the highest I see in one of the 4 individual cores. What data did Epstein have in his report?

Hoping everything works out for AS,

Djin

Yes, there is definitely that possibility as well. As for those percentages above, I don’t really understand it myself although I think my hubby figured it out at one point. The summary section at the top of the GenPath has that phrase you referenced above with the 60% but the description of individual cores in the section below shows. 40% as the highest. I posted images elsewhere of all 3 reports.

Post Edited (star0210) : 2/4/2020 8:27:02 AM (GMT-7)