Just wanted to say hello as this is a new journey. Hopefully most of you are experiencing success better than anticipated from the onset. . I share many of your diagnosis but for any of you out there with the more (rare) - intraductal Carcinoma diagnosis I'd love to see if it's possible to connect or ever better create a "community" group within the Health Unlocked site if that's possible? Just had Radical P. on 4.4.24 and looking for the few that have/closely resemble similar diagnosis; Intraductal Carcinoma, Gleason 9, Cribiform/PNI/Stage 3 , perineural invasion. Hoping I can learn from and share hopefully more often than not success stories, coping, challenges, advice. For the Intraductal PC world to a "newbie" only four months into this journey it seems to be a small minority of the overall "PC" community and might be best served by an independent community? Never like many out there saw myself in this club but hoping a separate community already exists? If anyone has any leads it would be appreciated as it seems overwhelming when filtering through hundreds of non-intraductal PC posts. Thanks in advance.
Intraductal Prostate Carcinoma - Advanced Prostate...
Intraductal Prostate Carcinoma
Adjuvant salvage radiation should begin ASAP:
prostatecancer.news/2021/10...
Thank you kindly for this information and quick response. It is of great help.
I've read all I can about IDC over the last 2 years and there just isn't any SOC concerning it. Some say bad, some say doesn't matter, etc. My surgeon just shrugged his shoulders and said he sees it in about 30% of grade 4 cases and it doesn't change any SOC treatment in his opinion. My uro said he treats it like any other PC. I went to a MO consult when my surgical pathology came back and she said no secondary treatment unless I had any hint/indication clinically of cancer outside the prostate in my pathology which I did not...no PSM, SVI, LVI, EPE, PNI, LNI, etc etc. I've been <.01 for 29 months now. So I decided to stop worrying about IDC and start living.
You do have elevated BCR risks with the PNI and I think that's what TA is getting at. Salvage radiation for the PNI since you do have high-risk disease. The only consensus that I've read is hit all PC hard and early no matter the grade for best chances of BCR free survival.
Good luck to you on your journey sir!
Thank you Don. Your insights are greatly appreciated and glad to hear you're last 29 months have been favorable. I'm taking your approach that hitting PC hard and early is best course of action.
HI Don, Just sent this and forward to all on my list.. maybe we can get some traction. Hope you're doing well?
Drakes
Hi Granolaberry,
Thanks for contributions - I've noticed you also have IDC. Trying to get as many folks with IDC to have a connections possibly even our own subgroup since it appears we are a minority of the PC world and it's always noted as "Highly aggressive" and not fully understood nor documented in research as often. Hoping to have chance to "Follow" you but your profile doesn't seem to allow or isn't activated? I may be unaware as to protocol as I'm not too tech savvy but wanted to reach out. Let me know if you're interested in further pursuit of others like us. I found two so far that are interested; FMOH, and OppositePlatypus9910, appears that the below are also in the same boat: Peppertree602, Cp014, Melzer2169 and Don717. That's it so far but hoping we can find more and group "think" and learn from each other.
Thanks Granolaberry,
Drakes
not aware of an existing forum or how to start a "sub-group" but would be interested and I've kept he "ID/names" of a couple of other ppl on here that are in same boat.
Hi Melzer. Thanks for taking the time to respond. If you have ID/Names or anyone else not in this thread please feel free to send over or post at some point as the more that can correspond might help one if not all of us. Thanks Melzer
Melzer hi there.. sent this as a starting point today:
Hi Granolaberry,
Thanks for contributions - I've noticed you also have IDC. Trying to get as many folks with IDC to have a connections possibly even our own subgroup since it appears we are a minority of the PC world and it's always noted as "Highly aggressive" and not fully understood nor documented in research as often. Hoping to have chance to "Follow" you but your profile doesn't seem to allow or isn't activated? I may be unaware as to protocol as I'm not too tech savvy but wanted to reach out. Let me know if you're interested in further pursuit of others like us. I found two so far that are interested; FMOH, and OppositePlatypus9910, appears that the below are also in the same boat: Peppertree602, Cp014, Melzer2169 and Don717. That's it so far but hoping we can find more and group "think" and learn from each other.
Thanks Granolaberry,
Drakes
Greetings bdrakes,
I just did a search of our history file and only found four occasions when I got a hit on the string "intraductal Carcinoma". Please update your bio, thanks!!!Best place is here for info and camaraderie.
Good Luck, Good Health and Good Humor.
j-o-h-n
SORRY, THERE ARE ONLY 3 POSTS, NOT 4 POSTS REGARDING Intraductal Carcinoma THAT I FOUND IN OUR HISTORY FILE:
HERE THEY ARE: (WITH OR WITHOUT RESPONSES FROM THE GROUP).
Good Luck, Good Health and Good Humor..
j-o-h-n Wednesday 05/15/2024 11:56 AM DST
***********************************************************************************
Intraductal Carcinoma....what's ahead?
Melzer2169 profile image
Melzer2169•
1 year ago•34 Replies <-------<<<
My husband (56) just received his final pathology report after his prostatectomy. T3a Gleason 4+3 (70% 4), Intraductal Carcinoma identified and Cribiform glands Present. EPE (non-focal) right posterior mid. no nodes involved and SV clear.
Prior to surgery his PSA was low, only 1.78 (but he was taking finasteride, so i understand we should think of that PSA more like 3.56...but that still isn't very high. he had no issues, cancer found during a colonoscopy & DRE that was done during that procedure. He also had a PSMA PET which did not show any cancer in other parts of his body, had a Decipher test that was .98 (which was scary to us)
I have tried to find info on this intraductal carcinoma and what i have found seems not good news.....we don't meet with dr until Jan (seems like forever away, will try to get something sooner).
Interested to hear if others had this and what does it mean for the treatment ahead. I like knowing the truth, so we can be better prepared.
Thanks in advance for any insights, experiences you may be willing to share.
Written by
Melzer2169 profile image
Melzer2169
*************************************************************************************
Intraductal Carcinoma and Cribriform Glands Present
ToryCarlisle profile image
ToryCarlisle•
1 year ago•6 Replies <-------<<<
Hi!
Am wondering if anyone can speak to intraductal carcinoma and cribriform glands. My husband just had a prostatectomy several weeks ago. Follow up appt with surgeon is next week. Overall the pathology report seems good! They downgraded his Gleason score from a 9 to a 7 (4+3), margins were clean, and lymph nodes negative. But they did note intraductal carcinoma and cribriform glands. I've tried to do some reading on both, but would like to hear from anyone with similar results.
Am hopeful since the prostate has been removed he'll be good to go!
Thanks!
Written by
ToryCarlisle profile image
ToryCarlisle
Female
*******************************************************************************
Intraductal Carcinoma & Cribiform pattern 4 treatment options?
FMOH_N profile image
FMOH_N•
10 months ago•11 Replies <-------<<<
Newly dx. PCa. with Intraductal carcinoma, IDC-P. This is the most aggressive prostate cancer type. In my case 4+3 with 70% pattern 4 with cribriform which make it even more worse. There are four types of pattern 4 (poorly formed glands, glomeruloid structures, cribriform glands, and fused glands) and the presence of cribriform glands is associated with an aggressive clinical course compared with other architectural subtypes.
I am reading that the IDC-P has poor response to ADT, CT (chemo), and external beam radiation.
Anyone who has news on recent/upcoming medications, clinical trials or alternatives to existing ones?
pubmed.ncbi.nlm.nih.gov/229....
"..........Recent clinical studies report that IDC-P is associated with neoadjuvant androgen deprivation therapy (ADT) and, chemotherapy (CT) failure as well as early disease recurrence after external beam radiation. Finally, IDC-P is associated with TMPRSS2-ERG gene fusion, which was reported to be regulated by estrogens and their receptors........."
pubmed.ncbi.nlm.nih.gov/289...
"Conclusion: The study showed that IDC-P is prevalent in aggressive prostate cancer and contains cells that can withstand androgen deprivation. Thus, IDC-P appears functionally relevant in advanced prostate cancer. The presence of IDC-P may be a trigger to develop innovative clinical management plans."
Here are some good reading and research articles:
ncbi.nlm.nih.gov/pmc/articl...
mdpi.com/article/10.3390/ca...
Written by
FMOH_N profile image
FMOH_N
Male59 years oldNorway
*****************************************************************************
Here are some statistics: modernpathology.org/article...
just noticed your post. Even though it’s 3 months old I thought I’d reach out. I’m in the same boat as you. Had RP July 2020 and got the bad news. Followed up with 33 IMRT sessions (starting about 3 months later) after an Eligard shot and 30 days on Casodex. After I was done with the radiation, my MO added Erleada to the mix. I’ll be on this combo until it either stops working or I die. Sooo, I’m 4 years into the fight. My Psa is undetectable on the standard test and my last bone and CT scans were clear. I go for blood tests every 2-3 months. The scans thus far have been yearly. If my Psa goes up I’ll see if they will send me for a PSMA PET scan. The thing with intraductal is it can spread at very low Psa levels. I think I was 4.6 at surgery and it was pretty bad at T3bN0. As others have noted, there doesn’t seem to be any special treatment protocol for this. Hit it with everything they got as long as you can tolerate the side effects. Other than hot flashes, I’m doing good with my current treatment. I hope to be around for a few more years but it’s in God’s hands.
Hi thanks for reaching out. I'm just back from a camping trip so catching up and would love to talk more.. for now just read your note and glad you're numbers seem to be holding nicely with no PSA detectable and CT scans clear. Your message encourages me to do the upcoming suggested radiation and hormone Therapy. Will follow up later today....
There was a note on one of my samples a 4 +3=7. INTRA DUCTAL COMPONENT IDC seen.
That is very concerning and I suspect why my Pc has already gone to my lungs.
My uro did not speak to that. He spoke of the ADENACARCINOMA 5+4=9 score and how it meant it was aggressive and indicated it might have spread already.
At time I did not see the notation.
I am just starting this journey and probably ahead of my drs. Yes I am looking for new ones this week and weeks to come I am sure.
Going to see uro specialist, professor at UTSW over 4000 robotic procedures. Dr Cadeddu if anyone has info.
Seeing aNOTHER MO next week in Dallas. Seeing my MO MONDAY.
Seeing uro after my bone scan next week.
My lungs are starting to get sore. One module already doubled.
I need to stop this now. Hoping the put me on adt this week.
Forget the lung biopsy I seen, felt enough time folks start doing something. If they do a biopsy I would request they take out what they can at that time. People just fn around.
Took 4 months to get my pet scan approved. After my lung got congested I had to call and raise hell w insurance and dr. Both said they were waiting on each other!!
Due to prior denial I was fed up w my bcbs insurance and did not want to deal w them. That was not the time. So got behind on things not realizing. I will be pushing hard not letting up at this point forward!
Not sure what ramifications are of the IDC but seems as though it is fast and aggressive and must be dealt with accordingly.
Wtf that is.
Hi drakes,
I saw your email from healthunlocked,
To fill you in i was diagnosed in 2004 and treated with EBRT.
I should first write that i have read and agree with all (or most) of the above about IDC and my experience of how Doctors think about it. Yes, the articles about it are a bit scary to read…In 2021 i had a BCR and consulted with MSK and others. I was recommended to have HD brachytherapy at MSK ( memorial sloan kettering). Was given a PSMA and no cancer was found outside the prostate.
Declined the treatment due to the fact that i had done radiation initially and didn’t want more. Cryotherapy was suggested and declined it. In between i did 6 months of firmagon ( ADT) and my PSA dropped from 1.6 to .09 .
Since then in 2023 till now i am not on anything. My RO is waiting i suppose until my PSA goes above 2.6 …Not sure i want to wait that long. As another post has said, ADT may not be that effective with IDC. It your situation considering that you have perineural invasion i would suppose the docs will want to do something…you may have already did something since it has been 4 months since your post…
Curious what State do you live in?
(Happy to email further or even talk…i have had some anxiety since 2021 but had the cancer psychologist at my local hospital to talk with…Eventually i stoped last January)…
Lastly, as someone mentioned above there doesn’t seem to be any SOC for this!
Bill
Inraductal/Ductal rare prostate cancer
Small Cell Carcinoma Prostate Cancer Help
Post RALP path report 
"Advanced Prostate Cancer"
Anyone dealing with Small Cell Carcinoma as their prostate cancer?
