Intraductal Guys ~ Please check in!

There is a second class according to Epstein at JHU for guys with Intraductal Carcinoma of the Prostate (IDC-P). Epstein feels that these guys should be treated regardless of Gleason Sum and his records are as accordingly:

> There are only 78 recorded cases of IDC-P in the Johns Hopkins books, only 60 with follow up.
> IDC-P guys do not respond as well to HT.
> IDC-P guys do not respond as well to taxanes.
> IDC-P guys are typically under staged (78% understaging rate) at biopsy.
> IDC-P guys have a poorer prognosis but this does not mean certain outcome.

I'm curious as to how you are doing. How are you being treated?

Thank you all folks.

Allen,
We have a new group at SWOG ~ Rare Cancers. The new PA his asking for my hand in finding out more information on this. As always you helped. I have found about ten papers on how to diagnose it. But nothing on how to proceed with you don't get it early. I sent feelers out to my very strong contact list. If taxanes don't work well perhaps taxanes with platinum may be a best bet. But it's rare enough that this is probably a great approach but only based on what does not work well. Not because carboplatin and cisplatin have been proven to work.

Agreed on all accounts. I have Q&A into Thompson, Hussain, and Vogelzang right now. Though a clinical trial for IDC-P would probably be impossible because of this rarity. I did find one trail testing various line one and 2 combinations of HT:

/clinicaltrials.gov/ct2/show/NCT02268175?term=intraductal+carcinoma+prostate&rank=1

This is just a subset. I don't see data coming from this for many years and perhaps few if any IDC-P cases.

We have a new category at SWOG. A rare Cancers committee. Marcia Horn is our newest PA in that committee and I am working with her on this. Marcia is the President and CEO of ICAN - International Cancer Advocacy Network. Glad to have her aboard. Anyone would like to reach her contact me. It's great to have her aboard. I'll reach out to Hilander.

Besides myself there is another person who currently has IDC-P on this site...user jwarren40 has a father who was diagnosed with IDC-P and is being treated at Vanderbilt. So that makes 2 of us.....

To answer your questions- I am ok I guess and I am currently not being treated. Still trying to get all testing done to get a final Dx.

I am also on Cancerforums.net and have not found anyone else there.

-Todd

Tony,
I read creative guy's posts and he does reference Intraductal Carcinoma but then talks about it as if it were cancer in his ducts....IDC-P is not cancer in the ducts.....it is a specific type of carcinoma that is almost always associated with aggresive PCa and is aggressive in itself. I think you've read the literature. Not sure if he missed that it was different or it isn't IDC-P...not sure.

To All; I have read many of your posts in this thread and others, and read several of the reports.

My Dad, 81 years old was recently Dx with IDC-P. A tumor was removed from the prostate when they were in for a needle biopsy. Biopsy came back IDC-P, Gleeson score of 4+5. A Bone Scan was conducted and came back as "innumberable foci of increased activity along the calvarium, spine, ribs, pelvis and sacrum consistent with metastatic disease."

Currently waiting for an MRI appointment to tell us progression in other parts of his body and organs.

I guess my question would be, Is there a chance with treatment and therapies or are we looking at just providing comfort?

Hi Todd,
Like everything else in prostate cancer there is a lot of insufficient data on IDC-P. The researchers I work work with all have opinions and typically more than one about how to approach IDC-P. But standard of care protocol is not out by any means because while there are some unique characteristics with this form of the disease, it many times is responsive to the SoC of today. about half feel removing the prostate is still good practice. Especially in the younger guys.

A note on PSA being a good biomarker for choosing any PCa therapy ~ It ranks below Gleason grading and stage by far as a predictive biomarker for outcomes.

S.O.,
I am so sorry that you are also dealing with IDC-P. Any form of pCa is awful but even more so the rare, aggressive types. There is only scant information available on IDC-P that I have been able to find. The lack of information increases the fear ten-fold. My husband was diagnosed October 2016 with Stage IV Intraductal. I have no idea what to expect for the future. I have learned though to live each day as the gift that it is. My husband finished docetaxol chemotherapy in April of this year. He is on Lupron and Zometa and is considered to still be hormone sensitive (a good thing!). He is doing very well except for a few medication side effects which we make adjustments for. He feels well, is happy, we love each other and that's all I can ask for this day.
I know I haven't answered any of your questions but hopefully it helps not to feel alone in this.

I don't have IDC-P (or at least I do not think so), but I have its cousin, Ductal prostate cancer (DPC). I am still not sure of the difference between the two. Sometimes I think that that doctors also do not know. My biopsy stated it was IDC-P but my pathology report said it was Ductal. They have a lot in common. Both are rare, hard to detect or treat and both are agressive.

Let's both hang in there and fight our respective beasts! As a saying on my hat reads "Stage Four? I Like a Challenge"!

S.O.,
My husband did not have a prostatectomy. The initial bone scan revealed metastases to the bone. The urologist and medical oncologist both agreed that removal of the prostate would be of no benefit. We were told that "the train is moving on the track. We can't stop it. With treatment we can slow it down and maybe even back it up a little, but we can't stop it. Eventually the train will arrive at the station". I'll never forget those words. However the oncologist did go on to say that there are many new promising treatments coming down the pike and there is hope for many good years.
It is my understanding that we are following the Standard of Care for any high grade aggressive cancer- i.e. early chemo and hormone therapy. I know that there are oncologists who treat only Prostate cancer, are highly specialized and have more experience in treatment of rare pCa's. My husband fully understands our situation but has chosen not to pursue that avenue. He has responded well to the treatment so far so I haven't pushed the issue. We're 57 years old. I feel cheated out of time that we could have had together. But we try to live every day to its absolute fullness.

Perhaps your husband just needs more time to process what is happening. I hope you are able to fight The Beast together. That makes things so much better for you both.
Best wishes for many loving tomorrows.

I

SO.,
I hope your weekend away was exactly what you both needed. My husband and I did the same thing after he was diagnosed and it strengthened us for the days ahead. I know the torrent of emotions that you are experiencing now while waiting for a more definitive diagnosis. I'm sure every person on this forum can relate to that as well. A community of experience, understanding and support is important and I think you'll find that here.

I'm happy to share our experiences and what we have learned along the way. Please post what you learn about treatments etc. Since there's so little information on IDC-P, .maybe we can compile our own! Stay in touch

his_so,

my husband's pathology report also indicated intraductal carcinoma. i've done a ton of research & emailed back/forth with a lot of doctors. i was told that there isn't any specific management plan nor specific expertise in this area. we were told to treat it as any other high grade prostate cancer; however, many suggested genomic testing. did your doctor ask your SO to do this?

hang in there! we're all in this "rare" boat together!

If there is any overlap in characteristics between ductal and interductal PC (and I really mean IF! Because I don't know! But Dr. WHO sort of suggests this above), then the reason pwallace's doctor correspondents suggested genomic testing may be this:

/www.ncbi.nlm.nih.gov/pmc/articles/PMC5347709/

In a small sample (10), 4 patients with ductal PC had a DNA mismatch repair mutation. DNA mismatch repair mutation with advanced (and advancing on treatment) PC is FDA approved for Keytruda.

So if those (rare) genetic markers are way more common in ductal PC, at least for that, there is a potentially large treatment impact. See my .signature.

There are many caveats about this, but at least do talk to your doctors. Especially if you are getting a biopsy on something other than bone! Because the testing would need to be done on that.

-- Carolyn