We finally had consultations at center of excellence in our area and both prostate surgeon and radiologist agreed that RP is the best course of action in our case. My husband has only one 4+3 core with IDC and cribriform. He is 69 and will be 70 in autumn. His Decipher score is 100 (yes, 100). Radiologist said that aggressive findings require an aggressive approach and that there is only one more aggressive treatment than radiation and that is RP. My husband is in very good health and still very active, so age was not an issue for making decision.
Wishing you the best with whatever you decide.
You have probably already been through all of the online studies, but just in case here are some links to studies on IDC=P . I found the findings significant and might help you arrive at a treatment decision. At the very least after reviewing these, you should have some very detailed questions for the RO and surgeon.
Bill
I'll join the confused and frustated crowd. Shocked at the lack of interest and/or specific treatment plan by both Hopkins radiologists and surgeons to my IDC diagnosis. (my first pathology was 3 core "evidence" of possible IDC. I had a second path acknowledged expert who said "extensive IDC". ) However radiologist still considers me a intermediate unfavorable (i now consider it high risk and have asked for a more aggressive plan), and surgeon is actually directing me to radiation. Based on what I ahve researched however, it seems to me RP is the preferred solution. I am going to join the xanax crowd shortly. It becomes all-consuming and immensely frustrating. Just reached out to Mayo, but i know that will take months, time which i dont feel I have. My kingdom for a thoughtful IDC treatment plan. PS 3+4 with one 4+3, and 70 YO.
We finally had consultations at center of excellence in our area and both prostate surgeon and radiologist agreed that RP is the best course of action in our case. My husband has only one 4+3 core with IDC and cribriform. He is 69 and will be 70 in autumn. His Decipher score is 100 (yes, 100). Radiologist said that aggressive findings require an aggressive approach and that there is only one more aggressive treatment than radiation and that is RP. My husband is in very good health and still very active, so age was not an issue for making decision.
Wishing you the best with whatever you decide.
Well, the newest literature seems to indicate that the best prognosis for any intraductal (cribriform) findings is surgery followed by radiation/ADT.
Yes, it’s a lot, but with your very high Decipher, the outcome is very scary if you don’t go all in with treatment.
Phil
I'll join the confused and frustated crowd. Shocked at the lack of interest and/or specific treatment plan by both Hopkins radiologists and surgeons to my IDC diagnosis. (my first pathology was 3 core "evidence" of possible IDC. I had a second path acknowledged expert who said "extensive IDC". ) However radiologist still considers me a intermediate unfavorable (i now consider it high risk and have asked for a more aggressive plan), and surgeon is actually directing me to radiation. Based on what I ahve researched however, it seems to me RP is the preferred solution. I am going to join the xanax crowd shortly. It becomes all-consuming and immensely frustrating. Just reached out to Mayo, but i know that will take months, time which i dont feel I have. My kingdom for a thoughtful IDC treatment plan. PS 3+4 with one 4+3, and 70 YO.
Well, the newest literature seems to indicate that the best prognosis for any intraductal (cribriform) findings is surgery followed by radiation/ADT.
Yes, it’s a lot, but with your very high Decipher, the outcome is very scary if you don’t go all in with treatment.
Phil
I'll join the confused and frustated crowd. Shocked at the lack of interest and/or specific treatment plan by both Hopkins radiologists and surgeons to my IDC diagnosis. (my first pathology was 3 core "evidence" of possible IDC. I had a second path acknowledged expert who said "extensive IDC". ) However radiologist still considers me a intermediate unfavorable (i now consider it high risk and have asked for a more aggressive plan), and surgeon is actually directing me to radiation. Based on what I ahve researched however, it seems to me RP is the preferred solution. I am going to join the xanax crowd shortly. It becomes all-consuming and immensely frustrating. Just reached out to Mayo, but i know that will take months, time which i dont feel I have. My kingdom for a thoughtful IDC treatment plan. PS 3+4 with one 4+3, and 70 YO.
I read last night that even doctors sometimes do not distinguish those two things. So I am not even sure what my husband has at this point . His report says :
"1 core involved by prostatic adenocarcinoma, gleason grade 4+3 (grade group 3). Gleason pattern 4 comprises 80% of the core and consisted of poorly formed glands with developed cibriform gland. Gleason 4 includes intraductal component .Perineural invasion and extraprostatic extension are absent.
This was the only core of 14 total taken that has this. Only 3 more have some changes and they are 3+3 .
Same her - my husband got this diagnosis last week in one of his biopsy plugs. At first I thought it just means 1 to 2 % chance of it spreading ( that is what urologist said) and was almost hopeful that we will get this beast under control, this or that way, especially if PSMA PET CT does not show spread but after finding time to read specifically about IDC entity I almost lost it last night . OMG, can it be more complicated and with less direction than this ??? I read somewhere in the wee hours of sleepless night that like half of IDC do respond to hormonal treatment and half do not. I was in daze so I do not even know what paper/ study was that. Actually I am sure it was not real study, just observation , it seems nobody studies this particular oddity. I think I will have to take a day off reading stuff just to stay sane here. I will be of no help to my husband if I fall apart.
The Mayo oncologist did start off with " looks like you have done everything right so far". This was a reference to IMRT and Lupron.
Every situation is different so you will need to find the Doc that works for you
It does start out as a deep dark hole. It was the worst psych trauma my wife and I have been thru (52yrs). Every test and scan showed a worse situation and the R. Onconcologist (not Mayo) would not return my calls. I ended up on Xanax. Rest assured it does get better. I no longer take or need xanax.
Update from Spryguy:
I am now 3 yrs from diagnosis.
PSA is undetectable. I am off of Zytiga, Prednisone, and the Lupron is starting to wear off.
Dr Moore (Mayo Oncologist) is calling it remission. Working on weight and dealing with fatigue (Nap everyday for an hour) and the dam(n) hot flashes.
So mostly GOOD outcome with some negatives thrown in. I hope all you guys can have at least this kind of outcome. God Bless
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Are you going to follow RP with radiation/ADT or watch and wait?
Phil
Hi @mlabus3
You have probably already been through all of the online studies, but just in case here are some links to studies on IDC=P . I found the findings significant and might help you arrive at a treatment decision. At the very least after reviewing these, you should have some very detailed questions for the RO and surgeon.
Bill
Prognostic value of intraductal carcinoma subtypes and postoperative radiotherapy for localized prostate cancer
https://bmcurol.biomedcentral.com/articles/10.1186/s12894-025-01690-1#:~:text=According%20to%20the%20Epstein%20criteria%20and%20the,2%E2%80%94solid%20or%20dense%20cribriform%20structures%20%5B14%2C%2015%5D.
Enrichment of “Cribriform” morphologies (intraductal and cribriform adenocarcinoma) and genomic alterations in radiorecurrent prostate cancer
https://www.sciencedirect.com/science/article/pii/S0893395222002629#:~:text=Herein%2C%20we%20analyzed%20radiorecurrent%20cases,relative%20to%20the%20pretreatment%20state.
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2 ReactionsWe finally had consultations at center of excellence in our area and both prostate surgeon and radiologist agreed that RP is the best course of action in our case. My husband has only one 4+3 core with IDC and cribriform. He is 69 and will be 70 in autumn. His Decipher score is 100 (yes, 100). Radiologist said that aggressive findings require an aggressive approach and that there is only one more aggressive treatment than radiation and that is RP. My husband is in very good health and still very active, so age was not an issue for making decision.
Wishing you the best with whatever you decide.
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Helpful -
Hug
3 ReactionsI posted it on your previous thread on today’s board…you’ve probably seen it already.
Phil
whats the "newest literature"? would like to review!
Well, the newest literature seems to indicate that the best prognosis for any intraductal (cribriform) findings is surgery followed by radiation/ADT.
Yes, it’s a lot, but with your very high Decipher, the outcome is very scary if you don’t go all in with treatment.
Phil
-
Like -
Helpful -
Hug
1 ReactionI'll join the confused and frustated crowd. Shocked at the lack of interest and/or specific treatment plan by both Hopkins radiologists and surgeons to my IDC diagnosis. (my first pathology was 3 core "evidence" of possible IDC. I had a second path acknowledged expert who said "extensive IDC". ) However radiologist still considers me a intermediate unfavorable (i now consider it high risk and have asked for a more aggressive plan), and surgeon is actually directing me to radiation. Based on what I ahve researched however, it seems to me RP is the preferred solution. I am going to join the xanax crowd shortly. It becomes all-consuming and immensely frustrating. Just reached out to Mayo, but i know that will take months, time which i dont feel I have. My kingdom for a thoughtful IDC treatment plan. PS 3+4 with one 4+3, and 70 YO.
I read last night that even doctors sometimes do not distinguish those two things. So I am not even sure what my husband has at this point . His report says :
"1 core involved by prostatic adenocarcinoma, gleason grade 4+3 (grade group 3). Gleason pattern 4 comprises 80% of the core and consisted of poorly formed glands with developed cibriform gland. Gleason 4 includes intraductal component .Perineural invasion and extraprostatic extension are absent.
This was the only core of 14 total taken that has this. Only 3 more have some changes and they are 3+3 .
Same her - my husband got this diagnosis last week in one of his biopsy plugs. At first I thought it just means 1 to 2 % chance of it spreading ( that is what urologist said) and was almost hopeful that we will get this beast under control, this or that way, especially if PSMA PET CT does not show spread but after finding time to read specifically about IDC entity I almost lost it last night . OMG, can it be more complicated and with less direction than this ??? I read somewhere in the wee hours of sleepless night that like half of IDC do respond to hormonal treatment and half do not. I was in daze so I do not even know what paper/ study was that. Actually I am sure it was not real study, just observation , it seems nobody studies this particular oddity. I think I will have to take a day off reading stuff just to stay sane here. I will be of no help to my husband if I fall apart.
-
Like -
Helpful -
Hug
1 ReactionUpdate from Spryguy:
I am now 3 yrs from diagnosis.
PSA is undetectable. I am off of Zytiga, Prednisone, and the Lupron is starting to wear off.
Dr Moore (Mayo Oncologist) is calling it remission. Working on weight and dealing with fatigue (Nap everyday for an hour) and the dam(n) hot flashes.
So mostly GOOD outcome with some negatives thrown in. I hope all you guys can have at least this kind of outcome. God Bless
-
Like -
Helpful -
Hug
4 Reactions