Intraductal Carcinoma....what's ahead? - Advanced Prostate...

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Intraductal Carcinoma....what's ahead?

Melzer2169 profile image
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.

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Melzer2169
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34 Replies
Tall_Allen profile image
Tall_Allen

This is one of those cases where one should consider adjuvant radiation. You can delay radiation with ADT for several months to give tissues time to heal.

RMontana profile image
RMontana in reply to Tall_Allen

My decipher was 0.97 with a GS of 4+3; my surgeon was expecting a decipher mid range...did some reading and this biomarker is pretty good at predicting aggressiveness of the cancer cell type. And you husband like me was taken aback by the percent probabilities that Metastasis and PCa cancer related death would be...but my surgeon pointed out the fine print below those percentages; "if no other treatment is pursued." There is the benefit of this biomarker. If the marker had come back the other way, say 0.20 then I would not have proceeded aggressively to treat this cancer; may not have gotten sRT (salvage radiation). But I threw the book at this thing as fast as I could to get ahead of what might come...we never know and doing nothing is always an option. But the data is statistical and if you do nothing the chance of nothing happening with high decipher scores is low...so for the treatment of the PCa if it were me, with a decipher that high, I would progress to treatment sooner rather than later...what treatment to take? I am not sure in your case...here is a good article on staging PCa using biomarkers...if and when my PCa progresses I want to use a battery of these tests to zero in on what is happening, where and what treatment offers the best 'chance' of cure...TNX

healthunlocked.com/active-s...

healthunlocked.com/active-s...

Melzer2169 profile image
Melzer2169 in reply to RMontana

thank you so much for all of this!! Wishing you luck in your journey. we are awaiting genetic testing results and I am now prepared to hear more treatments are coming, i figured but really appreciate the info you sent.

GP24 profile image
GP24

I have intraductal carcinoma. This responds well to standard therapy but the cancer will spread more quickly than non-intraductal PCa. If you can afford it, you could monitor the tumor with PSMA PET/CTs.

Boywonder56 profile image
Boywonder56

Rare and aggressive hystology.....wich i also posses....does not emit a high psa....but responds well to aggresive treatment....i was less fortunate as mine metastisised while only 12 psa...but went on lupron and titan trial ( aplutimide...erleada) almost 6 yrs ago....dx os was 2yrs....so....breathe....and stay positive loooks like hes responding well.....one word excercise...as adt will rob you of muscles...and that strongly effects qol.......kevin

Melzer2169 profile image
Melzer2169 in reply to Boywonder56

thank you and wishing you good luck

Bcgkelly profile image
Bcgkelly

My prostate cancer is intraductal as well. I’ve been able to find very little out about it. My PSA at diagnosis was only 4. I’ve had surgery and radiotherapy and it responded well to the radiotherapy. It’s been very slow growing since. Currently 0.2 and a PSMA scan is planned between 0.3 &0.5.

Melzer2169 profile image
Melzer2169 in reply to Bcgkelly

Thank you and best of luck to you!

Bcgkelly profile image
Bcgkelly in reply to Melzer2169

and to your husband.

Adendino profile image
Adendino

My husband was recently diagnosed with Gleason 9 (4+5) with a PSA of 11.5 and intraductal was identified on the 2nd biopsy reading by a new pathologist. Both RO and MO said it doesn’t affect how they will treat it and it’s not unusual in Gleason 9. They have recommended 8 weeks of EBRT + ADT (Casodex + Lupron) for 2 yrs + 1000mg of Abiraterone. My husband also had a clean PSMA-Pet scan, but had ECE and SVI.

Melzer2169 profile image
Melzer2169 in reply to Adendino

very helpful, thank you and good luck to you & your husband

Grandpa4 profile image
Grandpa4 in reply to Adendino

what is the advantage of Casodex if you are on Lupron and Abiraterone. Is the just in the beginning to block the initial increase in testosterone or for the entire 2 years.

Adendino profile image
Adendino in reply to Grandpa4

Yes, you are correct. They said Casodex for 2 weeks prior to starting Lupron. I still need to find out if he’ll go off Casodex now that the Lupron shots have just begun. The Abiraterone will start 2 weeks after Lupron. The MO sounded like she wanted to stagger the Casodex/Lupron/Abiraterone so as not to overload his system and to be able to determine which drugs may cause side effects.

spw1 profile image
spw1

Hi I would suggest treating aggressively at this early stage. My husband's diagnosis was delayed by an incompetent urologist and his intraductal cancer (Gl8) had metastasised. Most treatments worked but not for very long. Chemo did not work at all (Docetaxel or Cabazitaxel). We are waiting to find out the results of a PSMA scan done two weeks ago in conjunction with a trial screening to see if Lu177 might be a possibility too. I do not wish to scare you as an early diagnosis is a good thing for you guys and all individuals have different responses to things. I would suggest a combination of treatments rather than a sequence of one things at a time and waiting for it to fail before moving onto another.

Melzer2169 profile image
Melzer2169 in reply to spw1

thank you, i appreciate not wanting to scare me, that is nice but of course we all are here because we need and want the truth and facts as best as anyone can ....and I do understand each person is different. from others experiences I've learned a lot. I appreciate your opinion very much and really do appreciate your taking the time to respond. thank you

I was diagnosed with Gleason 9, IDC, cribiform and PNI exactly 3 years ago. Very aggressive, of importance I had Luminal Cell type B. Very sensitive to Enzaluamide, PSA nadir 0.03. If you have IDC this has a high correlation to BRCA2 mutant. A NGS was performed and yes, BRCA2 deficiency. I have been on Olaparib, a PARPi for 18 months, PSA now 0.11. Two options later, luPSMA or BAT. Important, there is cross-resistance bewtween chemo and Olaparib, in case of BRCA2 avoid chemo.

Melzer2169 profile image
Melzer2169 in reply to

Thank you very informative, we are getting theMSK Impact testing done, its not back yet.

Cooolone profile image
Cooolone

If you search, and dig, you'll find the information regarding IDC-p and Cribiform...

Basically, they're both considered adverse features during diagnosis. But the problem is that SOC doesn't necessarily treat those patients who have this present differently, even though the PCa with it "behaves" differently. Typically patients with these features have shown more aggressive disease, worse prognosis, etc. So the thought of using a heavy hammer early comes to mind. Like Triplet Therapy as first line... I'm no Doctor, but of I could do it all over again knowing what I know now, and the protocols being available now to me, I would want the kitchen sink thrown at it! Some systemic therapy with a kick that would hopefully knock it back for a long, long time.

I would hope that you are receiving your care at a Major Cancer Center and one rated in Excellence!!! This is very important, travel if you must and don't skimp here... As it is where you'll have the best chance at getting the very best team in your corner!

Best Regards

Melzer2169 profile image
Melzer2169 in reply to Cooolone

THank you...at MKS in Manhattan

Cooolone profile image
Cooolone in reply to Melzer2169

Top Notch, you're in good hands!

Wishing you the Best!

I think it is very important to find out whether you have the BRCA2 mutation or not. With IDC there is a positive correlation. If you use Docetaxel first, then Olaparib won’t work because the cells are resistant, reg: ncbi.nlm.nih.gov/pmc/articl...

Melzer2169 profile image
Melzer2169 in reply to

Thank you, we are having the genetic tests done, expecting results in a couple of weeks. thank you!

Cooolone profile image
Cooolone in reply to

Interesting, but they selected and used only a particular cell line for petri dish experimentation.

Quote:

While recent clinical work has shown the potential utility of using olaparib to treat advanced CRPC, it is not known where in the treatment sequence this drug should be used, nor has it been determined how previous exposure to different drugs will affect its efficacy [11]. We hypothesized that cross-resistance may exist between olaparib and currently approved CRPC treatments.

:End Quote

Absent in-vivo study, is nothing more than hypothesis...

Is interesting nonetheless because there are no options but to go along the SOC path. Olaparib is approved in what setting? Certainly not an environment that precedes Chemo use.

Treatment line use and exhaustion is a very big issue because there is no clear linear path, as every patient is different. Do we worry about exhausting a line before it's use, when using it may be the best treatment at that time to use for your diagnosis at that time?

It is such a conundrum...

Thank for posting!

in reply to Cooolone

i see your point, I studied the Profound trial and my attention to the supplementary files showed a hugh difference in the response for those who had BRCA2 chemo-naive or treated. OS difference of at least a year. The OS curves are widely separated. When I study BAT trials, luPSMA, Checkpoint it seems to be the same picture. I showed the Profound trial to my oncolog and he agreed to skip soc. I have now responded to Ola for 18 months with a very aggressive G9 IDC, would that have happened being Doc pretreated? Upregulation of ABCB1, the cells efflux pumps- can that hurt later treatments?

Cooolone profile image
Cooolone in reply to

That knowledge I wish I had 2 years ago, lol. And if more data is consistent with this it should be better known. You'll see in my posts my concern, and everyone should be concerned with, treatment lines and burning them. Or at least using them in the most beneficial sequence for a given diagnosis.

I had Docetaxel last year and only had a year before progression. Definitely BRCA- (1&2) and looking to do Olaparib after adding Darolutamide to Degarelix and RT for Oligometastatic spots (3)... So probably in a few months.

As an aside, how many oncologist test for a patient's cell line presence? How do we know "what type" we have other than genomic markers, so to determine if this or that therapy would be best?

Best Regards

in reply to Cooolone

I asked my oncologist, what when the cancer cells will be resistant to PARPi, first Enza killed 99%, then Ola kept them at almost not-dectable levels? The NGS performed 3 years ago is not very helpful. The only way to find out is a liquid biopsy, a ctDNA. If AR is upregulated then BAT will be the answer, if PSMA is high density in all lesions then luPSMA/acPSMA 😅

rscic profile image
rscic

These are my opinions (given what I know, my best GUESSES). 1st, if you do not have one, get an oncologist ..... they are specialists in Cancer treatment. The best one for you might be one with a special interest/qualification in Prostate Cancer.

The Bad News:

----4 + 3 with 70% of the tumor Gleason 4

----EPE (Extra Prostatic Extension??) which is non-microscopic??

----with EPE it is likely there is Gleason 4 Prostate Cancer in the pelvis

----a high Decipher score

The Good News:

----no known distant metastasis--this is good because the tumor might not be beyond the pelvis which would make it incurable.

----not mentioned so I am assuming, but no Cancer in the Seminal Vesicle's?? This is important as the seminal vesicle's are very vascular & it is thought the seminal vesicles are a main pathway for the cancer to get into the bloodstream and spread to the body outside the pelvis.

I happen to agree with Tall_Allen & Adjuvant Radiation to the pelvis should be considered. I was told to allow my urinary continence to come back as much as possible because once Radiation is started continence usually does not get better.

I also happen to agree with RMontana who states ".......if you do nothing the chance of nothing happening with high decipher scores is low ....." So, if one does nothing the chances are high the Cancer will spread AND with low PSA scores before initial discovery, might spread considerably before treatment criteria are met (I am not certain on this last point on this & it would be a good question for your Oncologist).

Remember, Stage 3 can be curable.

Just my thoughts based on my experiences & what I know.

GOOD LUCK

Melzer2169 profile image
Melzer2169 in reply to rscic

Thank you for taking so much time to answer my question. Correct no SV involvement. Just today the surgeon mentioned on a follow up call "he could see the ECE and went wide" but it still says positive margins. I did realize the lack of SV involvement was good news. we are just 2 weeks out from surgery and next PSA test Jan. at this moment they are saying, we wait and watch the PSA, but my concern is also that as we "wait" the sneaky bastard is getting around. But I guess there has to be some healing before any more treatments. He's doing pretty good but tired and working on the urinary continence - its pretty good.

THank you again

rscic profile image
rscic in reply to Melzer2169

Again, given your husbands profile, I agree with Tall_Allen that Radiation should be considered after appropriate healing & return of urinary continence (as much as possible). Just my best GUESS (opinion).

MateoBeach profile image
MateoBeach

With ECE and positive margin you must presume that cancer has escaped locally. Agree plan should prioritize early salvage radiation treatment to prostate bed and would include pelvic lymph node fields, especially with the aggressive tumor type. Suggest consulting with an excellent RO now to get a plan in place. A few months of healing from the surgery will likely be appropriate and they may want to start ADT / hormonal therapy in the meantime. Good luck.

Melzer2169 profile image
Melzer2169 in reply to MateoBeach

thank you

Peppertree602 profile image
Peppertree602

I had not so good pathology and Intraductal as well plus SVI and perineural with a G-9. My Decipher pre-surgery was .9 and post surgery was .41. When my MO and I called the Decipher office they said with a larger sample it could change and he stood by the .41 score. So far 2.6 years post surgery still <.01 and I test every 2 months. My RO in WI and Moffitt in FL both say normally they would radiate but with a .41 change they say not yet. I did go all out and take a TON of supplements ( I really miss Patrick and Nal with their research) and I do RGCC protocol every 6 months plus no sugar, no meat except fish, no dairy or eggs. Basically I follow this diet 95%. I realize there is no scientific evidence for any of this but my RO"s both said that only 3% of the people with my pathology are undetectable according to their experience. So who knows if it helps or not BUT why not is the way I look at it.

Melzer2169 profile image
Melzer2169 in reply to Peppertree602

thank you very much, are you on medication? do you mind my asking what and what supplements. I've been reading about the diet aspect and would like to try to change, but wow that is a huge shift. I mean of course to keep alive, worth it but it will be a lot of re-learning how to cook.

Peppertree602 profile image
Peppertree602 in reply to Melzer2169

I changed diet to whole food plant based with fish, no sugar or dairy. It was not that hard at all. Every mornings I juice with an Angel Juicer and do veggies every day religiously. Then I do RGCC, google it and I go to a clinic in Sarasota to an integrative MD for this. I do SOT twice a year and measure my circulating tumor cells and they are going down each time. As for supplement I take curcumin, resveratrol, grape seed extract, BROQ which is broccoli sprouts extract, garlic, Vit C, metformin, Vit E, plus all the RGCC tested supplements they recommend based upon my test.

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