My husband has Gleason score 3 + 4 = 7 (Grade Group 2 Perineural Inva?

Posted by bettycesar46 @bettycesar46, Jul 28 12:42pm

Hi Everyone,
My husband had biopsy done and the results came back that he has a Gleason score 3 + 4 = 7 (Grade Group 2 Perineural Invasive.

We are waiting for the doctor to call us with the official results and the next step. Does anyone know the course of treatment might be? I am so freaked out and was wondering if anybody had any thoughts to share.
Thank you

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Profile picture for bens1 @bens1

Your husband might want to use his biopsy material for a Decipher test which will give you all a feel for its aggressiveness. The results are used by doctors to decide treatment. As @jeffmarc said, getting another opinion is important, and you can do a telehealth with a center of excellence.

I too had a 3+4 with an 11.2 psa and chose specifically, a radiation machine with a built in MRI, vs fused images with other radiation machines. What the doctors can see, they can treat. I also felt the treatment parameters with that type of machine exposed less healthy tissue and therefore less side effects. So far so good. I was treated in February of 2023 and had spaceoar inserted.

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Thank you for posting your update.

I wondered a couple of things as you considered your options;
was removal ruled out?
what your urologists recommendation was?
was cribriform detected?

I am in the same boat with (3+4), 63, and have pni and cribriform. No health issues. I am weighing treatments and meet with my urology oncologists in mid-August.
Thanks.
Jon

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Profile picture for surftohealth88 @surftohealth88

Your husband unfortunately has IDC( intraductal carcinoma ) which is very aggressive feature according to papers and doctors. If you are not in a center of excellence you should find one and go there for second opinion on biopsy findings and proper treatment. Although perineural invasion is not of extreme concern it IS a concern and as you said yourself shows cancer trying to escape the gland. Ask for Decipher BUT be very proactive (as you are already), I would not personally wait for treatment. My husband unfortunately has IDC and cribriform gland formation and I understand your concern and worry < 3.

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Luckily, we live in Massachusetts. And he is being seen in Boston and one of the best hospitals. I am definitely gonna be getting a second opinion. We are waiting for the doctor phone call, and we’ll take it from there. Thank you so much! And good luck to you as well.

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Profile picture for jpbossert209 @jpbossert209

Perineural invasion is not uncommon and does not preclude successful surgery, nor does it necessarily indicate local spread. Surgery might be a bit more extensive, but still very good outcomes.

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Thank you!

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Profile picture for bettycesar46 @bettycesar46

Thank you so much for your detailed information and kind words. What really concerns me is at the bottom of the results. This is what was written:

Note: Perineural invasion and intraductal carcinoma are identified in this case.

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IDC, like so many things associated with prostate cancer, can vary considerably, so I would defer to conversations with your urologist. The main thing with prostate cancer is finding and treating it while it is still localized.

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Profile picture for handera @handera

In October 2023, I was diagnosed with Gleason 3+4, after having a prebiopsy PSA of 7.8 and a mpMRI revealed PIRADS 3, 4 and 5 lesions (see my profile for full details).

I agree with all the previous comments regarding getting a Decipher score.

IMHO, with a Gleason 3+4 diagnosis, knowing your Decipher score is essential, especially if you want to consider active surveillance (AS).

My Decipher score was 0.22 (low risk) and the accompanying Decipher GRID report (and my urologist) recommended active surveillance.

You will have to ask specifically for your Decipher GRID report…. I called Veracyte to obtain mine….an example of a part of my GRID report is attached, including the AS recommendation based on a “clinical-genomic” model of my particular situation.

If my Decipher score had come back “high risk” (>0.60) I would have most likely moved in some sort of conventional treatment direction.

I may still have to move in that direction someday, but 21 months after diagnosis my situation is demonstrably stabilized, based on follow up PSA levels and a follow up mpMRI. Monitoring is key to good AS practice.

Another word of encouragement, with a Gleason 3+4 diagnosis you have time to do your own research to become completely confident and a layperson “expert” regarding your particular diagnosis and treatment options.

In other words, don’t let anyone push you into a decision for which you are not fully comfortable.

It’s you and your husband’s life and quality of life that hang in the balance and the good news is that you have as much time as you need to make an informed decision, after being diagnosed with Gleason 3+4.

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How hard is it to get the GRID report from Veracyte. Hubby’s urologist doesn’t provide copies of the decipher or Artera.ai results. He just wrote an email and said the report came back as intermediate risk. We would love to see the actual results in print. Do you have to get permission or referral from the doctor in order for Veracyte to provide the info?

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Profile picture for bettycesar46 @bettycesar46

Thank you so much for your detailed information and kind words. What really concerns me is at the bottom of the results. This is what was written:

Note: Perineural invasion and intraductal carcinoma are identified in this case.

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You definitely need to follow up with your physician(s) to discuss the specifics of the Intraductal carcinoma (IDC-P) found in your husband’s pathology report.

IDC-P is often associated with more aggressive prostate cancer.

Although some Gleason 3+4 can allow for active surveillance, the presence of IDC-P could shift the recommendation toward definitive treatments like surgery (prostatectomy) or radiation.

Here’s a few questions I’d be asking my urologist or oncologist, regarding the IDC-P finding:

• How extensive is the IDC-P, based on the current pathology report?

• Does the IDC-P observed in this report change the risk assessment in my particular diagnosis?

• Can you help me get a 2nd opinion on my biopsy pathology, especially focused on the severity of the IDC-P?

• Can additional tests (e.g., especially the Decipher genomic testing) help to assess the overall aggressiveness of the PCa, for my specific case?

• How does the current IDC-P finding, in my particular case, affect my treatment options or monitoring plans?

I wish you and your husband all the best, as you chart your path forward!

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Profile picture for lizziew @lizziew

How hard is it to get the GRID report from Veracyte. Hubby’s urologist doesn’t provide copies of the decipher or Artera.ai results. He just wrote an email and said the report came back as intermediate risk. We would love to see the actual results in print. Do you have to get permission or referral from the doctor in order for Veracyte to provide the info?

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I have the same question about the GRID and even whether I need that given that the Veracyte report the treatment center shared with me seems complete and shows high risk. So I don't know what more the GRID would tell me, if anything?

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Profile picture for Setters and Birds @jonathanack

Thank you for posting your update.

I wondered a couple of things as you considered your options;
was removal ruled out?
what your urologists recommendation was?
was cribriform detected?

I am in the same boat with (3+4), 63, and have pni and cribriform. No health issues. I am weighing treatments and meet with my urology oncologists in mid-August.
Thanks.
Jon

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Jon: I am 66 and was 4+3 with cribriform and PNI. I did Tulsa Pro at Mayo Rochester last July. 1 year out and no sign of cancer. Very easy treatment for me and zero side effects.

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Profile picture for lizziew @lizziew

How hard is it to get the GRID report from Veracyte. Hubby’s urologist doesn’t provide copies of the decipher or Artera.ai results. He just wrote an email and said the report came back as intermediate risk. We would love to see the actual results in print. Do you have to get permission or referral from the doctor in order for Veracyte to provide the info?

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My urologist provided a copy of what is called the “Patient Report”. It goes over the basics.

Here’s the contact info of the person who helped me get a copy of my GRID report:

Michele Abolafia , Manager Customer Experience, michele.abolafia@veracyte.com, 858.322.6129.

That was 18 months ago, so if Michele is not available I’m sure someone else can help you.

You will have to call to speak to Michele (or someone), during normal business hours, since they must send a release form, to your email address, for you to return via electronic signature.

In addition you will have to send a scanned copy of your driver's license.

That said, Michele told me she would be looking for my completed form while I was still speaking with her, which I was able to turn around in ~10 minutes.

I sent my scanned drivers license directly to her email address, along with an email address they specified....privacy is (obviously) a key concern....

Of course (hopefully), the doctor who ordered your original 3 page Decipher Report could also obtain a copy of your GRID report.

However, I would be surprised if your doctor is going to be willing to take the time to review the intricacies of your GRID report with you...again...it's research use only and contains a boatload of data.

The GRID report is a detailed 7 page report and every page has the heading "Research USE Only"...this is important to keep in mind.

Veracyte has been collecting data since 2015 and they now have >200,000 whole transcriptome tumor profiles.

Apparently the latest Decipher GRID (for Research Use Only) database uses a proprietary AI platform to compile and generate a report that is personalized and based on the genomic test results obtained from the cancer cells removed during your biopsy, as compared to all the others in their database.

In a 23 minute video (Dr. Ashley Ross, MD PhD) explains the info supplied in the Decipher GRID report (found here:


Among the boatload of info in this report, I found some intriguing stuff regarding Gene Signatures related to "Tumor Metabolism" (i.e. scoring based on Androgen Signaling, Cholesterol Pathway, Estrogen Signaling, Fatty Acids, Glycolysis).

I'm still trying to understand what exactly this all may suggest...

In any case, it is undoubtably much more information than most will want to know and I'm sure most doctors will roll their eyes if you ask specific questions about the intricacies of your GRID info...but for us "data nerds" its where all this is heading regarding individualized treatment plans....for better or worse.....

All the best!!!

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Profile picture for TommyG @tdgillett

my Gleason score was 3+4 in on biopsy sample and 3+3 in another; no cribriform and the other 10 biopsy samples were OK. Decipher score: ..45, I'm 79. For me, Active Surveillance seems right. All the previous responses are on the money. Get the Dr Walsh book--it's a great resource. Take time to get more and more information (other opinions, too). Based on the results you describe, there's no rush.

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It definitely sounds like you are a case for active surveillance. Did you see the videos that were posted from the doctors that discuss if active surveillance is right?

Have you had an MRI of your prostate? An MRI guided biopsy assures that the spots that showed up as possibly cancerous are the spots that the samples are taken from. They only get one percent of the prostate when they do a biopsy so they can miss a lot.

Would you consider getting an expert to review your biopsy samples?. It might cost $500.

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