Prostate cancer, pathology report after RPR & Lymph nodes removed.
Hi. It's been awhile. My fiance had his surgery, RPR & Lymphendectomy.
The pathology results are so confusing.
We scheduled a PSA for 6 & 12weeks after surgery, per surgeons instructions.
We see the surgeons NP to discuss results but I think a medical oncologist would be very helpful.
The cancer included Cribriform-inside & outside of the prostate, IDC-P, no spread to lymph nodes, spread to bladder neck and other confusing pathology results.
I don't understand most of the acronyms or the doctor speak but we are trying to interpret each part of the report on Pubmed, Mayo, Prostate Cancer.org, etc..
1). I know that genomic testing is very important?
Can anyone explain this to me, in simple terms?
2). What is IDC-P, and what additional questions and tests should be asked for?
3). The surgeon started clear margins but I struggle with this due to the Cribriform outside the prostate, IDC-P and bladder neck spread.
4). PSA before surgery was only around 5.7. Highest Gleason was(3+4=7)-the Cribriform areas.
It's only been about 3 weeks since the surgery. I'm overwhelmed with fear for my boyfriend and lack of information, a very busy care "team", and I need to be equipped with the right information to help him during this life long journey..
I'm sure that I sound scattered but I'm really scared and the surgeon is very confident that, things went well and he should just have his PSA checked in 6 & 12weeks & every 6 months going forward.
This seems a bit simple for such a complex pathology report and from everything I have researched.
Any advice would be greatly appreciated. Please note that I'm just learning the terminology...
And don't get the acronyms very well...
Thanks in advance..
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You ask some complex questions
1. By genomic testing They’re referring to test like the decipher score, Prolaris, OncotypeDx. Those tests can tell you your chance of reoccurrence in the future. You definitely want this as soon as possible. I would ask the doctor to get a decipher test.
It differs from genetic testing, which you should also get, Hereditary genetic testing, tells whether or not there are genes that can make cancer worse. These are genes that are inherited from a Mother or father or both. I have one of them, BRCA2, It makes the cancer much more aggressive. Were there cancers in his family? That can be a factor in genetic problems.
2. IDC-P Is also called intraductal. It is an aggressive type of prostate cancer that can be very hard to treat. It appears as malignant cells grow by filling and expanding the existing, pre-existing prostatic ducts and acini. It appears as distinct, crowded, and heavily mutated cellular formations while preserving the outer basal cell layer of the duct.
Here’s an article about it
https://pubmed.ncbi.nlm.nih.gov/40186732/
3. It does show clear margins, and IDC-P And Cribriform Are not outside the prostate. Clear margins means they were able to get all of it out that was on the outside edge of the prostate
4. You want to ask the doctor if it was large cribriform, That is much more aggressive than Small and is more of a concern. A Gleason score of 3+4 is not real aggressive, but having both Cribriform and IDC-P Make it quite aggressive. If just a small cribrform that it is better.
If you can afford it, I would recommend you get a second opinion on the biopsy. That can give you a lot of information about whether what they found is really true and as diagnosed. Was the person that did the biopsy of specialist in prostate cancer?, That can be very important. One of the best places to get a second opinion is from Dr. Epstein at this website. You can call him and discuss this before you make arrangements. It does cost $500 but he will spend as much time on the phone with you as you need..
https://advanceduropathology.com/
3+4 doesn’t grow quickly so you do have time. Seeing what the PSA is after surgery is very important. As long as it is undetectable (less thann .1) That is a good thing. If it is not undetectable, then he may need radiation soon.
I would definitely not wait for six months for a PSA test. If he just had a 3+4 that would be fine, But with cribriform and IDC-P and Extraprostatic extensions You have to be very careful. Get at least test every three months you need to talk to the doctor about this. There is no known satisfactory long-term treatment for cribriform and IDC-P So you need to be very protective and keep close watch on what’s happening with the PSA.
Even though there was a 3+4 with all the other issues ADT would sure make a lot of sense. I am pretty sure a doctor at a center of excellence would want that. You need to get a second opinion if you are not at a really good place now.
I’m wondering if this doctor is at a center of excellence? He has What could be a very aggressive case of prostate cancer. Do you want the best people working with him?
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10 ReactionsI agree with all that Jeff said. I would strongly suggest doing uPSA (ultra sensitive PSA ) every month to check for biochemical recurrence (return of the cancer) since your husband (as mine) has very aggressive features such as cribriform and IDC and cancer obviously is showing aggressiveness since it spread to bladder neck already. There is also EPE and neural bundle invasion etc.
You need Decipher test done ASAP.
We were advised to do uPSA tests every 3 mos (6 mos is out of question) and if we followed that protocol my husband would have missed very important window for successful salvage treatment (it has to start before uPSA is 0.25 ).
Wishing you all the best and yes, if you are not being treated in a big cancer center of excellence please take your case there as soon as possible.
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3 Reactions@jeffmarc
Hi Jeff,
Thank you for responding to my many concerns.
I appreciate it..
This is all very overwhelming..
I will ask for the Decipher test & Genetic testing. The surgeon is aware that prostate cancer is in the family. He dismissed our concerns before the surgery.
And the genomic testing seems like something that would have been done. But again, this was ignored.
I will hopefully have a meeting with him soon.
My fiance is scheduled for a PSA soon. I'm hoping we can change this to the Ultrasensitve PSA.
If the care doesn't improve, we will have to go elsewhere.
We are at a Cancer Center of excellence. But maybe they are not all equal.
I appreciate your support and hope you are doing well..
Melinda
Ps: I've contacted Dr. Epstein.
Thank you.
@myboo2u
If you could mention where you live, state and general area. I might be able to give you the name of some really great doctors to work with.
Where exactly are you being treated right now?
@myboo2u Hi. Surf has written you above. There is also someone you will probably hear from that goes by Bikeman. The three of us have had RALP, have IDC and cribiform, recurred and are now in treatment for recurrence. I was also Gleason 7 but 4 + 3. I had 26 nodes taken out which were negative and my margins were clean. I went 6 months before my PSA started to rise. I think if you listen in on us and Jeff who already responded to you, you will be way ahead of the curve in educating yourself about this type of prostate cancer. The central issue is IDC and cribiform do not fall neatly in the Gleason system for risk assessment. The medical community now recognizes the additional risk but there is no standard protocol. I read that just 10 years ago 40 % of pathologists didn't even note it in findings. So we have found in our treatment that it is always good to emphasize to the doctor that those adverse factors exist in addition to the standard Gleason 7 finding. Having said that, it certainly is very possible your boyfriend has been cured by surgery. IDC is tricky and treatment resistant but still can be cured in the early going. The message from me is certainly not to panic but remember that some of the low risk platitudes do not apply and you must be vigilant. I am at Mayo and I did not have Ultra sensitive PSA testing and I have not had Decipher. MAYOs rationale is that if is not going to change our treatment we won't do the test. The regular PSA tests go down to .1. The ultra sensitive goes down to 0. However, if you boyfriend hit .1 or higher that is really the early marker for recurrence. Even if you saw the number going up with ultra sensitive that will not change the treatment. They would then want to test againto confirm and then try to start radiation and hormone treatment at about .2 or before . 25. That is the standard right now. As Jeff and Surf said I would want either ultra sensitive or regular PSA every three months. That is what Mayo did with me. The Decipher is a bit of a harder call right now. If you can get them to order it, I would go for it. I would like to get it now myself. The way a doctor may look at it for your boyfriend is " what good would decipher do right now? " How would it change treatment? They are just going to be monitoring your PSA either way. Hoping the best for both of you and please let us know how things are going. Dave
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5 Reactions@surftohealth88
Thank you for the information.
I've sent my messages to the care team.
And the request for a Ultrasensitve PSA, and Decipher test. I struggle with the lack of communication.
I will continue to press for the right care.
I hope your husband is doing well and your able to breath alittle easier knowing you have quality care.
I feel like I've been holding my breath since the initial office visit when his GP felt a mass during a DRE.
Wishing you both well.
Melinda
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1 Reaction@myboo2u My journey started this week one year ago with a PSA of three. I still would be untreated if not for the a DRE. My urine stream had slowed a bit I thought but I just wrote it off to old age.
@dhasper
Hi Dave,
Thank you for the information.
I greatly appreciate your support.
I'm sorry to hear that you are all going through this.
It's brutal..
I will definitely keep you posted..
Wishing you well and hope you are able to heal..
Melinda
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2 Reactions@myboo2u It is all very confusing so try to bear with it, OK? We’re all confused no matter where we are with this disease!
Don’t worry about the lack of Decipher or genomic tests or family history before surgery- it doesn’t matter one iota to the surgeon.
But NOW is when all those tests become super important as they will guide the rest of the cancer team (you should consult with a radiation oncologist and a medical one) to determine if he needs further treatment (radiation and/or ADT) sooner rather than later.
Best,
Phil
Get a second opinion immediately on the surgical pathology specimens. Send to Johns Hopkins or to Epstein. If you aren’t at a major center, they could’ve been misread. Cribiform is usually good agreement amongst pathologists but there is often disagreement with IDC. Good luck to you.
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