Inraductal/Ductal rare prostate cancer

[chuckotheclown]

Searching for someone with Intraductal or ductal PCa. Less than 1% of annual diagnoses are intraductal. I was diagnosed late October with possible mets to skull, jaw, and lymph node. Now on a second 3 month Lupron shot with scans again in July.

[Hidden]

I've got idc-p too chuck. Diagnosed in dec, Gleason 8, rp confirmed extracapsular extension but margins negative and no seminal vesicles invasion. My psa is now <.008 (very lucky so far)

Going to see my excellent urologist at Yale tomorrow so if you have any questions I might be able to work them in.

I believe Dr Who and Nalakrats belong to our rarified club.

All the best

[chuckotheclown in reply to Hidden]

Thanks, presently at MD Anderson. While a long haul, so far so good. Have a 3 oncology team, surgeon, radio, medical. All supported Lupton with Zytiga as first line. The bad news is the likely 2 lymph nodes are near my rectum and nobody yet wants to go there.???

[Dr_WHO]

Welcome to the club! Only 0.4% of the prostate cancer cases are ductal. Please note that there is a difference between ductal and interductal. That said, both are hard to detect, hard to treat, and tend to be on the aggressive side. Listed below is a good 2016 article on it. You can find more on the web:

ncbi.nlm.nih.gov/pmc/articl...

I was diagnosed in January 2016 with T3N1 Ductal. Had to argue with the surgeon to operate as it had spread to my pelvic lymph nodes. Had surgery that April, started Lupron last June and finished 38 rounds of radiation last October.

One of the things to know about Ductal is that it does not always produce PSA. I had to beg the pathologist to stain a slide from a lymph node that was totally transformed into cancer. He found that 30% of the cancer did not stain for PSA. He also could not state how agressive, or fast growing, this 30% was. As a result I am constantly fighting to get scans on a regular bases. I would suthat you see if you can move up your scans.

The next thing to know is that most urologist, radiologist and medical oncologist have never treated a case of Ductal cancer. Generally they just treat it as normal advanced cancer. The problem is that it does not respond as well with normal treatments such as radiation or chemo. Right now they are debating how long I should be on Lupron. One wants me off it ASAP, another thinks I should be on it for two years while the last wants me to be on it for the rest of my life. At this stage none of them are recommending chemo even though some recent research has shown positive results when used in combination with Lupron.

That brings up the next point. You will have to become your own advocate. Do not be afraid to challenge the doctors or insurance companies on what the best treatment will be.

Now the last point. Up to now most of my message was a bit of a downer. While it is information you need to know, please go on with your life. Cancer is what you have, it is not who you are. Someone else originally said that but it is still true. Focus on your life, and doing the things you love. I have gone on a multiday bike ride three months after the surgery, gone scuba diving two months after finishing radiation. I still enjoy doing things with my wife and family.

[chuckotheclown in reply to Dr_WHO]

You are a God send! Thanks for the much needed and appropriate advice. Let the games begin.

[Tak-Druk]

I had some intraductal PCa in my biopsy - confirmed w second review at Johns Hopkins. Original PSA around 2.5; Gleason 8. Originally treated prostate with cyberknife sbrt, but pre-radiation scans missed metastases - which were probably microscopic at the time. Pre-rad PSA around 4 dropped then started rising after nine months. I tried other interventions before ADT, by but PSA kept rising. Scans were showing mostly lung mets, with one bone met on my ischium. My doc thought PSA was low for the tumor activity showing, so he biopsied lung tumor and the results showed it was NOT the 'silent' type which does not raise PSA. I started Lupron + docetaxel almost two years after radiation, when my PSA had gotten into the 20s. PSA dropped over three months to undetectableover and it has stayed there for 2.5 years so far. Early scans showed tumors in lungs shrank by at least 50%. My last bone scan was clean but insurance wouldn't pay for CAT! I have new insurance now... Trying again soon.

I also moved recently and started with a new doc... said I was beating her expectations based on my charts... which I take to mean that I'm lucky not to be in worse shape at this point.

[chuckotheclown in reply to Tak-Druk]

Big help as I begin my journey. Thanks very much. Hoping you continue beat "expectations" and this crazy disease. With second 3 month Lupron (Eligard) underway, I am pushing oncologist to scan me sooner than the 7/10/17 appointment.

[Tak-Druk in reply to chuckotheclown]

Good luck to you! You didn't mention, but I would definitely look into prophylactic chemo at this point. I think that chemo at beginning of ADT is pretty much accepted practice now, depending on individual circumstances. Big study completed a few years ago showed significant benefits for survival time. I am pretty sure that hitting my cancer w chemo early has helped me do well on ADT so far... The tumor shrinkage was clearly evident:. I'm assuming that was not just ADT.

[chuckotheclown in reply to Tak-Druk]

Got it! Thanks. I am pushing to get back to MD Anderson before July 10 appointment. Your research and results are highly motivating.

[chuckotheclown]

Nalakrats, What is the difference between Ducal and Intraductal? Any knowledge or experience with Proton Beam?

Thx Chuck

[Hidden]

Nal,

What was your psa post rp after three months?

[chuckotheclown]

where are you being treated?

[Hidden]

Found this very informative presentation on IDC-P

handouts.uscap.org/AN2015/C...

[Boywonder56]

I to am one of the luck ducts....18 mos...lupron...mets...but slow to grow...rare but u have found a good bunch of fellow suffers....