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MDA has some ‘splainin to do!

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Posted 2/4/2020 3:30 PM (GMT 0)

star0210 said...
Can we post images on this site?


sadly, no, but you can post a link to the image.
Posted 2/4/2020 3:39 PM (GMT 0)

InTheShop said...

star0210 said...
Can we post images on this site?


sadly, no, but you can post a link to the image.

Thank you. 🙂
Posted 2/4/2020 4:20 PM (GMT 0)

Skypilot56 said...
... 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.


Larry, there is now another option. Just search for prostate cancer forums and you'll find us.
Posted 2/5/2020 1:10 PM (GMT 0)
An update...

Sigh. We just received another message from MDA.

"We are requesting the slides from the outside institution and will review the case again.

Unfortunately, the slides were returned and the accessioning question has not been scanned.

Therefore, you can expect that it may take a couple of weeks until we can address the grading discrepancy."

This annoys me on so many levels. I STRESSED this to them in correspondence and on the phone numerous times while they still had possession of the slides.
I explained to them that the doc had asked their pathologist to take another look and that we didn’t want them to return the slides to GenPath until we were sure that review had been done. After a few days and multiple back and forths we finally gave up as we were getting nowhere and finally said to go ahead and send them back.

The frustrating part is we didn’t even request this. We were told in the same sentence we were told about their dx that THEY had already made the request but just hadn’t heard back yet. It was completely reasonable then to expect a response and an answer at some point. Now it’s nearly two months later, the slides have been sent here and there and everywhere and by the time all of this gets accomplished now, we will likely already have had the next biopsy.

ok, rant over.
The MRI and biopsy next month are what matter at this point anyway.
Posted 2/27/2020 6:43 PM (GMT 0)
So what the heck does this mean?

“ This report has been amended by Dr.Troncoso on 02/25/2020 to change the diagnosis from part A. In the original report a
Gleason score of 8 (4+4) was assigned. The specimen was re-reviewed and due to the perineural location of the tumor , a
Gleason score is not assigned..”
Posted 2/27/2020 6:47 PM (GMT 0)
"what does this mean?"

you need a new medical team who knows what they're doing ...
Posted 2/27/2020 6:48 PM (GMT 0)

InTheShop said...
"what does this mean?"

you need a new medical team who knows what they're doing ...

I can say I have zero confidence in the pathologists at MDA.
Hubby has MRI and biopsy there in a few weeks and before they even do it, I will have the wheels in motion for the slides to be sent to KH.

Post Edited (star0210) : 2/27/2020 12:02:40 PM (GMT-7)

Posted 2/27/2020 8:46 PM (GMT 0)

star0210 said...
So what the heck does this mean?

“ This report has been amended by Dr.Troncoso on 02/25/2020 to change the diagnosis from part A. In the original report a
Gleason score of 8 (4+4) was assigned. The specimen was re-reviewed and due to the perineural location of the tumor , a
Gleason score is not assigned..”

I'm semi-guessing, but this sounds like a CYA semi-retraction wrapped in a non-retraction.

Djin
Posted 2/27/2020 9:47 PM (GMT 0)

DjinTonic said...

star0210 said...
So what the heck does this mean?

“ This report has been amended by Dr.Troncoso on 02/25/2020 to change the diagnosis from part A. In the original report a
Gleason score of 8 (4+4) was assigned. The specimen was re-reviewed and due to the perineural location of the tumor , a
Gleason score is not assigned..”

I'm semi-guessing, but this sounds like a CYA semi-retraction wrapped in a non-retraction.

Djin

Know what I call it...BS!
Posted 2/27/2020 9:59 PM (GMT 0)

Djin said...
I'm semi-guessing, but this sounds like a CYA semi-retraction wrapped in a non-retraction.

I also believe it is a CYA
Posted 2/28/2020 12:26 AM (GMT 0)
I had two 4+3's and one 3+4 post-op. (Shrugs shoulders). Not going to change how I proceed anyway.
Posted 2/28/2020 12:47 AM (GMT 0)
So here’s the breakdown in chronological order.

Original pathology by GenPath
Slide A 3+3 with perineural invasion
Slide F 3+3
Slide J 3+3
Slide K 3+3

Slides sent to MD Anderson ahead of our consult. Their pathologist said
Slide A 4+4 G8 with perineural invasion
Slide F 3+3
Slide J atypical cells suspicious for carcinoma
Slide K 3+3

Slides then sent to JH. They said
Slide A 3+3 with perineural invasion
Slide F 3+3
Slide J atypical cells suspicious for carcinoma
Slide K 3+3

Slides sent back to MDA at their request
Slide A due to the perineural location of the tumor , a Gleason score is not assigned
Slide F 3+3
Slide J atypical cells suspicious for carcinoma
Slide K 3+3
Posted 2/28/2020 1:10 AM (GMT 0)
Just a thought, email the latest MDA info to Jonathan Epstein referencing their review and case number and see if he can offer some insight to description and what it means. Only another pathologist could understand that description.
Posted 2/28/2020 1:12 AM (GMT 0)
OK. Thanks for putting all the opinions out there....

You have general agreement on F, J, and K.

Slide A, they all agree there is PNI, and the question is whether it is 3+3 or 4+4. With the PNI, regardless of gleason score, AS is not a good plan.

What it comes down to is the debate about whether that core is a G3 or G4. IMO, based on two opinions that give it a G3+3-with one being JH, I'd probably go with the G6--and plan a treatment. I'd be leaning for a radiation program--SBRT maybe--and go for the cure.
Posted 2/28/2020 1:38 AM (GMT 0)
Star, he has an upcoming scan correct? Will that be his first? At another Forum, I'm seeing age 51 and Oncotype low risk, correct? Did you have a tentative treatment besides AS if the verdict was G6? As you know, even G6 can sometimes grow out of the prostate with EPE or BNI.

If it's an MRI, a treatment decision can wait for any targets, another biopsy, and more evidence as to confinement status.

Djin
Posted 2/28/2020 3:15 AM (GMT 0)

DjinTonic said...
Star, he has an upcoming scan correct? Will that be his first? At another Forum, I'm seeing age 51 and Oncotype low risk, correct? Did you have a tentative treatment besides AS if the verdict was G6? As you know, even G6 can sometimes grow out of the prostate with EPE or BNI.

If it's an MRI, a treatment decision can wait for any targets, another biopsy, and more evidence as to confinement status.

Djin

Yes, he has a 3t MRI followed by a fusion guided biopsy in a few weeks at MDA. It will be his first scan. And yes his OncoDX score was 23 - low risk.

At this point, the controversy over the slides is just a matter of curiosity. Their comment just doesn’t make sense to me. Not assigning a Gleason score due to tumor location?

Hubby is planning on AS if G6 and leaning heavily towards proton therapy if he needs treatment.
Posted 2/28/2020 3:19 AM (GMT 0)

halbert said...
OK. Thanks for putting all the opinions out there....

You have general agreement on F, J, and K.

Slide A, they all agree there is PNI, and the question is whether it is 3+3 or 4+4. With the PNI, regardless of gleason score, AS is not a good plan.

What it comes down to is the debate about whether that core is a G3 or G4. IMO, based on two opinions that give it a G3+3-with one being JH, I'd probably go with the G6--and plan a treatment. I'd be leaning for a radiation program--SBRT maybe--and go for the cure.

Like I just said to Djin...he has a MRI and another biopsy coming up in a few weeks. We are totally over these slides.
It’s just a matter of curiosity at this point.
I’m just trying to understand MDA saying that due to the location of the tumor, they are not assigning a Gleason score to it. Have you ever seen or heard of that?
They had no issue initially giving it a Gleason score of 4+4 G8.
Posted 2/28/2020 10:40 AM (GMT 0)
Never heard that comment on a path report.
Posted 2/28/2020 12:30 PM (GMT 0)

star0210 said...
[
Hubby is planning on AS if G6 and leaning heavily towards proton therapy if he needs treatment.

Star, proton therapy is a long expensive process with no proof that it is any better than other radiation protocols. Have you guys considered LDR Brachy, HDR Brachy or SBRT? Please make sure you educate yourselves on all of the options before pulling the trigger.

Jim
Posted 2/28/2020 1:25 PM (GMT 0)
What a roller coaster, Star. I've been following your whole scenario and would likely do what you're planning to do, i.e. get a more detailed biopsy. Since MDA already got in touch with you, then you won't need to go rogue. That will help you avoid the awkwardness of still being a patient there. I hope they greet you with a red carpet and bottle of champagne when you visit there again. My guy had an analogous situation at a major cancer center supervising his treatment--a couple big mistakes made and a couple way too brusque visits. But we need their expertise all the same. We can't be running around looking for another major cancer center for treatment again, though at the next crossroads we'll get a second opinion without transferring our whole shebang to a new place. Been there, done that. I wish you the very best outcome: a clear confirmation that your guy is Gleason 6 and can follow active surveillance protocols forever.
Posted 2/28/2020 2:13 PM (GMT 0)

Tudpock18 said...


Star, proton therapy is a long expensive process with no proof that it is any better than other radiation protocols. Have you guys considered LDR Brachy, HDR Brachy or SBRT? Please make sure you educate yourselves on all of the options before pulling the trigger.

Jim

That’s what the RO at MDA told us. That proton is no better than photon from a treatment outcome perspective. He told us he’d do it if we just wanted that extra bit of “flare” and if our insurance would cover it. But everything we’ve read says it IS better from a SE perspective.

The day we met with them, their recommendations were all based on their pathologist saying he was G8. But all of that was predicated on IF he was actually a G8. We don’t think he is and I don’t think they think that either.

So we are waiting now for MRI and another biopsy in a few weeks and then will likely be starting over on our thought process unless they verify that it’s just G6. Then we do AS.

Post Edited (star0210) : 2/28/2020 7:21:43 AM (GMT-7)

Posted 2/28/2020 2:21 PM (GMT 0)

spouse21 said...
What a roller coaster, Star. I've been following your whole scenario and would likely do what you're planning to do, i.e. get a more detailed biopsy. Since MDA already got in touch with you, then you won't need to go rogue. That will help you avoid the awkwardness of still being a patient there. I hope they greet you with a red carpet and bottle of champagne when you visit there again. My guy had an analogous situation at a major cancer center supervising his treatment--a couple big mistakes made and a couple way too brusque visits. But we need their expertise all the same. We can't be running around looking for another major cancer center for treatment again, though at the next crossroads we'll get a second opinion without transferring our whole shebang to a new place. Been there, done that. I wish you the very best outcome: a clear confirmation that your guy is Gleason 6 and can follow active surveillance protocols forever.

Yes, we need the expertise and the skill of the docs, therefore I’m behaving myself to the best of my ability.
My frustration level with MDA is pretty high. I logged into his MyChart account the other night to find the time of his MRI and while poking around I noticed a new charge dated 2/11 for pathology. So I wrote to them and said, I’m assuming this means you have received the slides back and have re-reviewed them and if that is correct, please share the findings with us. Had I not noticed the charge and asked, I doubt they would have even let us know. After I read the response, I chose to just let it go and simply responded with a Thank you very much. At some point in the future, I will find a way to let them know of their shortcomings.
Posted 2/28/2020 4:16 PM (GMT 0)
Just exactly what is that extra “flare” of proton? Specifically what does he mean.

Actually, there is no extra “flare” from a treatment perspective. Photons and protons do exactly the same thing to cancer. Even ASTRO, the radiation oncology society says not to use it except in trials as it has never been proven to be more effective that any of the photon methods for external beam radiation (EBRT) or brachytherapy and only adds cost to the patient and healthcare system for PCa. With the greater cost to you and your insurance company, the doctor will no doubt be paid more than say SBRT as Hal has suggested you consider. Why go 40-45 times for Proton when you can go 5 times for SBRT or even one or two times for brachytherapy and have the same cancer control results? Treatment convenience and quality of life and cost would definitely steer me away from Proton or traditional fraction EBRT and toward SBRT or brachytherapy if I were in your shoes.

The only extra “flare” for Proton with PCa is the extra cost. You should already know whether you insurance will cover it. Just ask them.
Posted 2/28/2020 4:38 PM (GMT 0)
...and other than "Brother of the Balloon" anecdotal evidence I have not seen any rigid studies that show PBT yielding fewer SE's than LDR Brachy, SBRT or HDR Brachy. If you do have such studies I hope you will share them as they will undoubtedly be helpful to others considering treatment.

Jim
Posted 2/28/2020 4:54 PM (GMT 0)

JNF said...
Just exactly what is that extra “flare” of proton? Specifically what does he mean.

Actually, there is no extra “flare” from a treatment perspective. Photons and protons do exactly the same thing to cancer. Even ASTRO, the radiation oncology society says not to use it except in trials as it has never been proven to be more effective that any of the photon methods for external beam radiation (EBRT) or brachytherapy and only adds cost to the patient and healthcare system for PCa. With the greater cost to you and your insurance company, the doctor will no doubt be paid more than say SBRT as Hal has suggested you consider. Why go 40-45 times for Proton when you can go 5 times for SBRT or even one or two times for brachytherapy and have the same cancer control results? Treatment convenience and quality of life and cost would definitely steer me away from Proton or traditional fraction EBRT and toward SBRT or brachytherapy if I were in your shoes.

The only extra “flare” for Proton with PCa is the extra cost. You should already know whether you insurance will cover it. Just ask them.

I can’t answer what he meant by that. I didn’t ask. Just stating what he said. But I would assume he was, in part, referring to cost.
Again, this was sort of a “what if” meeting. When we got there and they told us about their pathologist upgrading him to G8 they wanted to cancel our consult with the RO and postpone it until after this next biopsy. We asked to keep it as we had driven 6 hours and wanted to know his thoughts either way. We figured we could hear his thoughts and opinions and it would give us something to research while we waited for the mri and biopsy in March.
Both uro and RO were on board with AS if he’s G6. RO suggested EBRT with a brachy boost and 2 yrs of hormone therapy if the G8 were true. Those were the only two scenarios we discussed. I disk him about SBRT and he said not a candidate if he is G8.
We haven’t even looked into whether insurance will cover it because we’re just not there yet. We are still banking on G6 and AS. Hubby’s employer has a deal with MDA and ins co that if we are treated at MDA, there is zero out of pocket cost to us. We haven’t looked into whether there are any exclusions.
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