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 brian5837 @brian5837

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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Understandable!

Beside providing where one stands according to a "Clinical-Genomic" risk model (critical information if considering active surveillance), the GRID report provides information regarding the specific tumor biology "signature" of your particular form of prostate cancer.

This "signature" information helps determine whether your particular cancer cells are more or less likely to progress or have a favorable outcome, after treatment.

Your gene expression profile is also assessed as to whether it exhibits any of the more aggressive "neuroendocrine-like" disease features.

Whether your tumor is a "luminal" or "basal" subtype (luminal having a more favorable prognosis) is also ascertained. The GRID report even breakdowns, if "luminal", whether it is "differentiated" or "proliferating"; which is a measure of how receptive it would be to androgen receptor inhibition (ADT)....and all this on page 1!

There is also much more complicated analyses. "Genomic Atlas", "Gene Expression" and where your cancer cells are located on a 'Gene Expression Matrix" heat map. Your doctor is probably hoping you don't ask what these mean... remember the "Research Only" caveat....

Finally, the report provides a list of clinical trials that are pertinent for your specific form of prostate cancer.

As I indicated in another follow-up post in this thread, this may be much more than someone is interested in knowing; but its your life we are talking about and, at the very least, you may want your trusted doctor(s) to have this information to help guide their recommendations as to what treatment(s) are likely to be the best in your specific situation.

If your doctor says this information doesn't matter regarding his treatment recommendation, then all I would say is that they probably practice a "one size fits all" kind of medicine.

If that's fine with you, then leave it at that.

IMHO the future is moving to more personalized PCa treatment options, that are based on the cancer cells that are removed from your own body....but that's just me....

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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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Your husband is the patient, he definitely has a right to his report. Your urologist’s behavior would be a red flag for me.

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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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@jonathanack
I did not want to take the chance of some of the side effects with having my prostate removed.

My Urologist gave me two choices either prostate removal or radiation. I did a lot of research on my own as he was not great on talking about the latest and greatest in Radiation or for that matter any new technologies.

I did not have cribriform.

Private message me and I will go into mote details, if you like.

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Profile picture for topf @topf

Your husband is the patient, he definitely has a right to his report. Your urologist’s behavior would be a red flag for me.

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This is why we are switching urologists. We want the actual reports, not just an email telling us what the results were. Even then, there is just a small amount of information. Reading this thread, seeing what info is included on the reports, alerts us to the fact that we are not getting the whole picture.

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Profile picture for handera @handera

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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Wow! Thank you so much! This is very helpful, and I’m very grateful in your sharing this info, and great explanations as well.

Thank you! Thank you!
Lizzie

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Profile picture for bens1 @bens1

@jonathanack
I did not want to take the chance of some of the side effects with having my prostate removed.

My Urologist gave me two choices either prostate removal or radiation. I did a lot of research on my own as he was not great on talking about the latest and greatest in Radiation or for that matter any new technologies.

I did not have cribriform.

Private message me and I will go into mote details, if you like.

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Thank you. I sincerely appreciate you taking the time to answer my question. I am concerned re: side effects. The cribriform element in my case was a surprise and raises the potential need for complete removal of all cribriform (which it turns out is not indeed a possibility with any single treatment). The side effects are not somthing I am willing to consider at this point. And that risk has me looking around a lot to alternatives and options to 'buy some time' until something better is put in place.

Thanks Again - my best wishes to a long run to the end without pc being the cause.

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Profile picture for jcf58 @jcf58

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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I appreciate your reply and am encouraged by your news. Sincerely. Best of health! Thank you. Jon

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Profile picture for handera @handera

Understandable!

Beside providing where one stands according to a "Clinical-Genomic" risk model (critical information if considering active surveillance), the GRID report provides information regarding the specific tumor biology "signature" of your particular form of prostate cancer.

This "signature" information helps determine whether your particular cancer cells are more or less likely to progress or have a favorable outcome, after treatment.

Your gene expression profile is also assessed as to whether it exhibits any of the more aggressive "neuroendocrine-like" disease features.

Whether your tumor is a "luminal" or "basal" subtype (luminal having a more favorable prognosis) is also ascertained. The GRID report even breakdowns, if "luminal", whether it is "differentiated" or "proliferating"; which is a measure of how receptive it would be to androgen receptor inhibition (ADT)....and all this on page 1!

There is also much more complicated analyses. "Genomic Atlas", "Gene Expression" and where your cancer cells are located on a 'Gene Expression Matrix" heat map. Your doctor is probably hoping you don't ask what these mean... remember the "Research Only" caveat....

Finally, the report provides a list of clinical trials that are pertinent for your specific form of prostate cancer.

As I indicated in another follow-up post in this thread, this may be much more than someone is interested in knowing; but its your life we are talking about and, at the very least, you may want your trusted doctor(s) to have this information to help guide their recommendations as to what treatment(s) are likely to be the best in your specific situation.

If your doctor says this information doesn't matter regarding his treatment recommendation, then all I would say is that they probably practice a "one size fits all" kind of medicine.

If that's fine with you, then leave it at that.

IMHO the future is moving to more personalized PCa treatment options, that are based on the cancer cells that are removed from your own body....but that's just me....

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Wow, thanks so much for this detailed information both in this reply and your earlier reply. Very kind of you to go to these lengths to answer our questions.

FWIW, I got halfway through the video explanation of the GRID report and closed out. Not sure if I will request the GRID or not at this point. Might be nice to have in my back pocket if things go south if it will help in treatment. But it may also drive me crazy in the meantime trying to play doctor and interpret this data for my health future.

Thanks again.

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Profile picture for jeff Marchi @jeffmarc

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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Had an MRI and followed with MRI-guided biopsy. I'm fortunate to be dealing with a university medical complex and NCI center of excellence, so I'm comfortable with the biopsy review.
Thanks for your response, Jeff.

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I also was 3+4 with 10 out of 14 biopsy cores mostly 3 and a few 4s. I had perineural invasion and a decifer score of 95 which is real high. They (MSK) wanted to do 6 mos Orgovyx + hdr brachytherapy followed by 5days sbrt without a spaceoar and radiating the lymph nodes. I got a second opinion from NYU Langone Dr Jonathan Haas who I immediately connected with. He is one of the most experienced with cyberknife and he recommended 6 mos Orgovyx than 3months later by 5 days cyberknife with spaceoar, no lymph nodes. I was 72 at the time researched intensely for 6 months saw 7 doctors and thankfully found the right one for me . It all went smoothly with little to no side effects. I am very happy 1.5 years out. I am glad I did not have a prostatectomy for its many side effects it has that a few doctors recommended . One reason being that many times microscopic cancer cells are left behind which than leads to having radiation anyway. Wishing you all the best with your decision.

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