Ductal prostate cancer

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nccajun
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 3/2/2013 2:56 PM (GMT -6)   
My husband has diagnosed last month with ductal prostate cancer...Gleason score 9(4+5) Biopsies confirm it has invaded the bladder, urethra, and possibly the rectum(CT Scan isn't too clear on that one) It accounts for about 1-2% of all prostate cancers and there's not a lot of information out there about this. He's currently taking chem and hormone therapy to hopefully shrink the tumors, then have the surgery to remove prostate and bladder. I was wondering if anybody out there has personal experience with this form?

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1785
   Posted 3/2/2013 3:32 PM (GMT -6)   
Wow, had never heard of this but a quick Google search yielded some information. The little bit that I read about this particular type of PCa indicated that it's prone to spread somewhere in the endocrine system (brain, pancreas, etc.), and that patients with ductal PCa can benefit from endocrine therapies as well. That's about all I was able to find.

There is nothing that I can contribute here but hopefully someone else will stop by and answer your questions. We have quite a few Gleason 9s here currently dealing with different treatment modalities. Perhaps some of them will be able to help.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 2676
   Posted 3/2/2013 3:55 PM (GMT -6)   
I have never heard of it either. Are you being treated by an oncologist that has more than a passing knowledge of this. Try a google search on oncologists that possibly specialize in this form. There is a woman at the U of washington who is considered in the top 5 prostate oncologists, but cannot remember her name and could not find her on W dubs website. I used her name be fore on this forum but can not remember her name. There are others on this forum that were familiar with her when I used her name, maybe they will remember. either way. that would be my advice. Find the best travel to them. Your basic urologist is, arguably, not not who you want advising you on this. Stay strong.
Diagnosed 8/14/09 psa 8.1 66,now 69
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough ED penatration at 2 years with cialis/viaga. < .1 at 33 mod < 0.1 @ 39mos

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 3807
   Posted 3/2/2013 4:07 PM (GMT -6)   
nccajun:

From the name you chose you may be a La native who has relocated to NC. If so I may be local to you we could compare notes on local treatment facilities.
60
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg (some inflammation),
2)neg,
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
4)neg.
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT3 7/26/12
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Leaky but better, Trimix, VED
Forum Moderator - Not a Medical Professional

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3136
   Posted 3/2/2013 4:23 PM (GMT -6)   
I saw this at the PPML PCa threads, the links may be of interest to know. Seems some forms of HGPIN are in this category and not easily deciphered and high risk for early HT failure (mentioned in one of those links). I suggest you read up on IDC-P, especially information from Dr. Bohnkoff. Here are some links. Google IDC-P PROSTATE for more hits. (ductal cancer)

http://prostatecancerinfolink.net/2010/09/08/intraductal-carcinoma-of-the-prostate-idcp/ 

http://www.ncbi.nlm.nih.gov/pubmed/22458904

http://onlinelibrary.wiley.com/doi/10.1002/pros.22579/abstract 

nccajun
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 3/2/2013 4:44 PM (GMT -6)   
Thanks for all the replies. We were at Duke, where it was originally diagnosed; unfortunately, they didn't have any experience with ductals. We are now getting treatment at MD Anderson in Houston. We decided to come here for a second opinion because they are one of the few treatment centers that actually have treated ductals. about 2 yrs ago, he had a biopsy that came back negative and his PSA stayed around 5 for a couple of years. The doctors originally thought it was bladder cancer that spread, but pathology confirmed prostate. We're hoping the treatments will shrink the tumors so the surgery to remove the prostate and bladder will be easier on him and the surgeon.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 2676
   Posted 3/2/2013 8:59 PM (GMT -6)   
Why would the posts still indicate 3 like back in 2007. Its cool I see it, don't understand and it cool that I don't. I'll just adjust to it in my own way. Really Its Kool and the Gang.
Diagnosed 8/14/09 psa 8.1 66,now 69
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough ED penatration at 2 years with cialis/viaga. < .1 at 33 mod < 0.1 @ 39mos

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 3017
   Posted 3/2/2013 9:03 PM (GMT -6)   
Welcome to our corner of the world. Sorry you need to be here. Sounds like you've got more than your share to deal with.

Wish I had some info for you but just wanted to say hello and hope that the treatments work.

All the best,
Andrew
I'll be in the shop.
Age 53
PSA 4.2 10/11, 1.9 6/12, 1.2 12/12
GS 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My PC blog

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 5866
   Posted 3/2/2013 9:24 PM (GMT -6)   
Logo,
 
I've seen members who were here for may years with very few posts. If folks get what they need from the site without generating a lot of posts, we should be proud that what they find answers their questions.
 
 
Moderator - Prostate Cancer
(Not a medical professional)

DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12;Prolia 6-mo inj 12/12

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 2676
   Posted 3/2/2013 11:13 PM (GMT -6)   
You did not understand the point, thats cool. please enough awreddy
Diagnosed 8/14/09 psa 8.1 66,now 69
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough ED penatration at 2 years with cialis/viaga. < .1 at 33 mod < 0.1 @ 39mos

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 3807
   Posted 4/3/2013 8:42 PM (GMT -6)   
nccajun,

If you are still getting email notifications on your thread, there is a new member whose husband is newly diagnosed with ductal PCa with whom you might be able to compare notes.

www.healingwell.com/community/default.aspx?f=35&m=2691244
60
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg (some inflammation),
2)neg,
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
4)neg.
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT3 7/26/12
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Leaky but better, Trimix, VED
Forum Moderator - Not a Medical Professional

rrmailmom
New Member


Date Joined Apr 2013
Total Posts : 7
   Posted 4/4/2013 7:15 AM (GMT -6)   
Hello,
 
First of all, I want to wish both you and your husband well :)
 
My husband was just diagnosed with Ductal on March 21.
We just got the pathology report from his Urologist this week (no consult yet).
His Gleason scores are all in the 7's mostly and 7 of his biopsy cores came back positive.
His CT showed a mass on his pancreas and a small nodule on his adrenal gland.
 
We have an MRI this Friday, then a consult with Urologist #1, then another consult with referred Urologist #2 in Dallas, where I'm assuming we'll be discussing treatment.
 
I have heard about the Houston facility and am considering all options.
 
It is probably too soon for you guys to know anything, as you are probably right in the beginning of treatment, but any info / referrals you could share would certainly be appreciated.
 
Take care,
Christine

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 1684
   Posted 4/4/2013 8:56 AM (GMT -6)   
For Oncologists with significant experience with advanced and difficult cases, remember Dr Snuffy Myers in Virginia and Dr Oliver Sartor at Tulane University Medical Center in New Orleans. I would suggest you at least get information from them regarding their experience with Ductal cancer.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 and Testosterone less than 3 since February 2011

rrmailmom
New Member


Date Joined Apr 2013
Total Posts : 7
   Posted 4/4/2013 7:42 PM (GMT -6)   
JNF - thank you for the Dr.'s names
I will definately check them out

nccajun
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 4/19/2013 4:10 PM (GMT -6)   
Thanks for the link, I'll click on it now.

Just an update on Danny...he's had 3 rounds of chemo and so far it looks as though that has stopped the growth. If all continues, we'll be looking at surgery within the next 2 months. Thank you for all the help.

BILL C
New Member


Date Joined May 2013
Total Posts : 8
   Posted 5/3/2013 7:34 PM (GMT -6)   
Good evening....I was diagnosed with prostrate cancer in JANUARY. They have been trying to shrink the cancer by using hormone therapy without much success. As of today the diagnosis was changed to prostrate ductal carcinoma. The hormone therapy was not shrinking all of the cancer only 1/2 was reacting favorably. You're post gave me hope since chemo is next. It is tough since this cancer is rare and there is not a lot of information available. I am being treated at the university of PENN. If you could please tell me the name of the chemo drug and the DR. I believe by being well informed you can do much to have success in you're treatment. Thank you very much because my diagnosis was scaring the HELL out of me and you gave me HOPE......THANKS ONCE AGAIN BILL

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 2676
   Posted 5/4/2013 1:34 AM (GMT -6)   
Darn, BillC, I wish I knew anything about this. I know a lot of times when people say they will keep you in their prayers, that it sounds like. "Wow Im really screwed now, the're praying for me". Believe me this is not the case, in my view. Prayer is not a religious icon, it is a manifestation of man's{generically}, ultimate love for his brother/sister, to the point, that that love is so strong that he believes, really believes that it will transform that, that is, into that, that is not, or the obverse depending... I believe this , so when I say I am praying for you, it's the best I can do. I mean that . It IS the Best…, I can do. Stay strong , ride tall, this beast in any disguise is beatable. Start with the step of corralling the best medical team you can find. you seem to be doing that, then believe in them. Shake the negatives out, pursue the best that is in you. What else you got to do? You know exactly what I am saying you just needed to hear it from a brother. You know what Bill, when I started this post, I did,t know what to say. But a silent prayer welled up in me….. give me the words. That prayer was answered, ain't that right Bill C, ain't that right? Stay with us, we are here with and for you……. Logo
Diagnosed 8/14/09 psa 8.1 66,now 70
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough ED penatration at 2 years with cialis/viaga. < .1 at 33 mod < 0.1 @ 39mos

Post Edited (logoslidat) : 5/4/2013 1:00:43 AM (GMT-6)


nccajun
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 5/4/2013 3:44 PM (GMT -6)   
Bill,

My husband is taking Cabazitaxel and Carboplatin ever 3 weeks, started 2-21-13. He's also had two hormone shots....one Degarelix and one Lu****. Our oncologist, Dr. Shi-Ming Tu at MD Anderson in Houston is one the few doctors that actually has patients with ductal prostate cancer, that's why we chose to go down there. The last CT Scan showed that the cancer isn't getting any bigger. We're waiting on an endorecatal MRI later this month, which will determine if the tumor has backed away from the rectum. If so, we'll schedule surgery as soon as possible. The cancer has spread to the bladder, urethra, part of the right ureter, and a couple of lymph nodes are questionable. Gleason is 4+5=9. We're hoping by blasting it with chemo first, that we've killed off any cells that may be wondering around.

Danny seems to be handling the chemo fairly well. Minimal hair loss, very little nausea(no vomiting). Fatigue is the worst symptom. And of course there's side effects of Lupron, but for the most part that's not been too bad either. They backed off a little on the dosage for Thurs' round because his red blood cells were off...this was the first time they've been low.

There's another lady here, MsWorryWart, who's husband also has ductal. They opted not to do surgery at the last minute to have IMRT(Intensity-Modulated Radiation Therapy) instead. We've not ruled this out yet, still doing research on it.

I wish I could give you more information, but we are learning as we go. We did find out that PSA levels tend to remain low, Danny's at his highest was 8.4 annd has come down to 2.1 And that ductals tend to mets to organs instead of bones.

We'll keep you in our prayers and if we learn anything else, I'll be sure to let you know.
Husband is 70 yrs old, diagnosed in Jan 2013 with ductal prostate cancer that invaded the bladder, urethra, part of right ureter, and possible lymph nodes.
Gleason 4+5=9 PSA 8.4
Currently receiving chemo in hopes of shrinking tumors so he will be able to have his bladder and prostate removed. Receiving Cabazitaxel and Carboplation every 3 weeks since Feb 22,2013. Also received shot of Degarelix and Lupron.

BILL C
New Member


Date Joined May 2013
Total Posts : 8
   Posted 5/22/2013 4:09 PM (GMT -6)   
GOOD AFTERNOON.....I am starting chemo on tuesday. They are starting with docetaxel and carboplatin. I am worried about nausea. Dr keefe gave me three pills to combat the symptons. I am also taking luprin and bicalutamide. This is tough for a man that medicated himself with over the counter drugs for 55 years all these medications and trips to the DOCTOR ARE TOUGH TO SWALLOW.However it sure beats the alternative. Hopefully this chemo stops the cancer so that it can be treated with radiation.
Is DANNY still handling the chemo well. How is his hair loss. Please keep me informed as Him and I have the same cancer. What ever info. you pass on helps beause my doctor is consulting with DR. TU since I believe he has more experience with ductal cancer. Thanks for passing on the information as it has helped.......THANKS AGAIN BILL C

Phenom
Veteran Member


Date Joined Dec 2011
Total Posts : 549
   Posted 5/22/2013 4:25 PM (GMT -6)   
Tough going, and I wish the best for both of you in your battles. Please keep us posted.
Age 67, Arlington, VA
4/11 PSA 10.2, +DRE; 5/11 Bx 6 cores + right, 6 cores - left, G3+4
11/16/11 RLP, G3+4, <3% cancer, +PNI, -nodes, -ECE, -margins, -ves
11/23/11 Catheter out
11/28/11 To ER, severe abdominal attacks, 2 days in hospital, catheter back in
12/5/11 Cystogram, bladder neck leak
1/5/12 Catheter out again
PSA 1/12--11/12 <.01; 5/13--.03 (dang!)
99% continent, 100% ED

nccajun
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 5/22/2013 11:37 PM (GMT -6)   
Hey Bill C,

We are leaving MD Anderson tomorrow with a really great MRI result. We have an appointment with the surgeon on June 6th, and he still needs to look at it to ok surgery. From the report we have, the prostate has decreased by half since all this started on 12-31...the bladder, urethra, and ureters look good....what was 3 questionable lymph nodes has become only one that was measured, and it's shrunk considerably. And no more chemo so he can get his strength up for surgery.

Danny has lost some hair, but really, not that much. He was given some pills, sorry can't remember the name, and they did help with the slight nausea he had; but he only took a couple of them the whole time. Fatigue and low red blood counts were the worse part for him. Right now, he's one point from being in trouble so I'm glad he doesn't have any more chemo. The first three days after chemo were the hardest for him, but after that he started feeling better.

Good luck with the chemo, and I hope that your experience with it goes as well as Danny's.
Husband is 70 yrs old, diagnosed in Jan 2013 with ductal prostate cancer that invaded the bladder, urethra, part of right ureter, and possible lymph nodes.
Gleason 4+5=9 PSA 8.4
Currently receiving chemo in hopes of shrinking tumors so he will be able to have his bladder and prostate removed. Receiving Cabazitaxel and Carboplation every 3 weeks since Feb 22,2013. Also received shot of Degarelix and Lupron.

Willk
New Member


Date Joined Aug 2014
Total Posts : 2
   Posted 8/26/2014 9:51 PM (GMT -6)   
I've had my prostate removed for ductal C. Margins were clear and lymph nodes were clear. I am wondering what the monitoring protocol is for anyone of you in a similar situation?

Patrick M
Regular Member


Date Joined Nov 2013
Total Posts : 214
   Posted 8/27/2014 8:09 AM (GMT -6)   
Welcome to the forum Willk
I bet that the moderator moves your post to a new thread and then you will get some folks chiming in

Pat
Age 48,
PSA 14.7 06/24/2013
PSA 14.6 08/20/2013

Biopsy 10/1/2013 - 2 out of 12 cores positive
Gleason 3+3

RALP on 11/11/2013.
Catheter out on 11/18/2013

Still a little leaky 02/23/2014

PSA <0.1 01/13/2014

Current very happy member of the 0 Club

(Not a Medical Professional)

BILL C
New Member


Date Joined May 2013
Total Posts : 8
   Posted 8/27/2014 9:43 AM (GMT -6)   
GOOD MORNING...Ductal cancer is somewhat rare. The doctors at the UNIVERSITY OF PENN that treated me had only seen 5 cases of DUCTAL cancer prior to me. They were able to shrink the cancer with DOXCETAL AND TAXOTERE. I have nerve damage in my hands and feet. I then had approximately 40 radiation treatments. The radiation was not too tough. I was lucky as my health was good and I was 62 when starting the treatments. The worst part of the treatment was the LUPRIN and the lack of LIBIDO. I do not have quite the energy that I once did. I argue as to whether it's old age or the cancer. My psa is 0. It started at 29. The doctors threw everything they had at the disease. Now I visit every two  months for checkups. Both chemo and radiation deptartmens monitor me. I receive bone scans and cat scans. .The DRs. that treated me were DR KEEFE AND DR BECKELMEN. I also HAD A NURSE PRACTICIONERS that were excellent by the name of GINNY HOLLIS AND JUNE. All of these nurses and DRS. did and continue to do an excellent job of helping me heal. Communication was and is the most important part. If I had a problem they would give me a medication as promised to combat the symptom. Only problem now is the LUPRIN. I should not complain because the PSA is 0. The ED is treatable but I do not like it , However I feel good and have enough energy to enjoy life. Any questions please ask .....BILL

Willk
New Member


Date Joined Aug 2014
Total Posts : 2
   Posted 8/27/2014 6:51 PM (GMT -6)   
Hey Patrick, thanks for the welcome. And Bill, thank you for your insights.

As said earlier, I have DC. My prostate was removed, margins clear, and lymph nodes clear. My Doc is planning radiation as what he calls adjuvant care. The radiation will start soon since I've now become continent and my Doc wanted me to have control prior to radiation. He said if I had had regular PC he wouldn't do the radiation, but with Ductal he felt it a good precaution to do radiation.

Is there anyone out there who has DC with clear margins, and lymph nodes?

Post Edited (Willk) : 8/27/2014 7:26:18 PM (GMT-6)

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