Not all prostate cancers have high PSA

Please note that about 1% of prostate cancer can occur in the ducts. As a result the PSA may be very low, sometimes below 2. The result is that these types of cancer are generally not found until it is advanced. If you have an enlarged prostate or any symptoms please discuss this possibility with your physician.

While rare, a "common" version of cancer that does not raise your PSA is metastatic ductal adenocarcinoma prostate cancer. Listed below are some links. Unfortunately, the five year survival is low and there looks like researchers still do not have a good screening test. However, that does not mean that you do not fight.

http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2011.10520.x/pdf

http://www.omicsgroup.org/journals/prostatic-ductal-adenocarcinoma-case-report-and-literature-review-2167-0250-1000139.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111052/

http://www.karger.com/Article/Abstract/438785

Welcome Dr Who. Are you really a Dr? Uro? Onco?

We have had a few members here in the past with Ductal Prostate Carcinoma. Yes, it is generally an aggressive form of PC

dr., there are many knowledgeable guys here who no doubt will post shortly. This is a great place for finding support....and HOPE, so stick around we are all in this together.

I assume you have ductal PC? Even aggressive PCs have treatment options that can be very effective for long periods of time.

Dr Who,

I'm sorry to read that disappointing path report. Salvage radiation after positive LNs have been detected is controversial - 2 studies found a benefit, one didn't. The studies are just data analyses and we don't have a randomized clinical trial to guide us.

Impact of Adjuvant Radiotherapy on Survival of Patients With Node-Positive Prostate Cancer

The Impact of Definitive Local Therapy for Lymph Node-Positive Prostate Cancer: A Population-Based Study

Patterns of care and outcomes of radiotherapy for lymph node positivity after radical prostatectomy

From your post, I'm not sure if your cancer was ductal or intraductal (they're different). It may be radioresistant, in which case radiation would be futile and would only add to the morbidity of the prostatectomy. I really don't know, but I hope you are hooked up with one of the few medical oncologists who has experience dealing with this.

Please keep in touch as you deal with this.

- Allen

Dear Allen,
I do not know if it is ductal or intraductal. One of my frustrations is getting information from the specialists. Here is what the pathology report stated. I have been using Google to decipher the report with little luck. I am seeing radiologist and hormonal specialist next week so hopefully I may finally get some answers.

"Metastatic ductal adenocarcinoma replaces the entire lymph node (1/1, 2x1.8, extra nodule extension). Ductal adenocarcinoma of the prostate, Gleason score 4+4=8.
Extraprostatic extension is identified at the right posterior apex and the mid Seminal vesicles, vasa deferentia and all surgical margins are negative for tumor. The tumor nodule extensively involves bilateral posterior from the apex to the mid portion of the gland. T3N1"

Post Edited (Dr WHO) : 5/7/2016 8:44:26 AM (GMT-6)

Dr. Who,
If you can have Johns Hopkins give you a 2nd opinion on your pathology. Dr, Epstein wrote the book on Intraductal Carcinoma (IDC-P).
Todd

At this point a medical oncologist will serve you better than a urologist. One of the top medical oncologists is at UMich - Maha Hussain. It may be worth a call to her to ask if she's dealt with some cases of ductal cell carcinoma. If Cleveland Clinic isn't too far for you, you can ask Eric Klein if he's dealt with it. I'm not familiar with any famous ones at Henry Ford.

Dr. Who, It sounds like you're making the right moves so far. Dr. Menon is certainly one of the best davinci surgeons out there. In case you hadn't already figured it out, Mr. Tall Allen is our go-to guy for the latest research.

You've got a challenging situation, to be sure, but hope is not lost. There are experts out there who are figuring out your rare situation, it's just a matter of finding them. In the mean time, you've found us. Feel free to drop in any time with your questions, concerns, frustrations, and triumphs. You've found a band of brothers who get it.

We have a member here who is probably close to you, 'Compiler' will probably check in soon. He may have some specific thoughts for where you could go and who you could see.

I agree with others that finding a good oncologist with a specialty in PC is of essence for your future. The two oncologists that I know are top of the line, are Dr.Charles Myers in Virginia and Dr.Christopher Logothetis in Texas. There are others. These two are the type that will look at each individual situation, send your tumor type for genetic analysis, treat the whole person, use medication off-label if they deem it could keep you in remission; they are well-read, knowledgable fighters, specialized in PC, well-published on PC and seem to truly care. I am describing what I have learned about them throughout the years, in order to give example of what to look for in your oncologist. I truly believe, a great oncologist makes a difference. Knowledge is power.

I was only diagnosed with PC during the pathology of my bladder after Bladder cancer and they removed my bladder and prostate. I came out of that with a Gleason 7 rating.

I was tested weekly for about 6 months and there were no elevated PSA readings.

In fact, my Oncologist said "You were lucky you had Bladder Cancer, the Prostate Cancer would have killed you".. Well, BC is pretty deadly also. Maybe more so. However he mentioned I had a very aggressive form of PC. I still get checked yearly for PC, not BC.

More than one of us guys with BC were diagnosed with PC after our Radical Cystectomy (RC) of our bladder. I think there is a link, but no one is confirming that.

NEO