Anyone else out there with ductal adenocarcinoma?

Ok, 129 people have read this note. No one else here has ductal cancer?

I'm not sure I really qualify, but my post op pathology stated that my cancer was 90% Acinar and 10% Ductal. I was diagnosed as Gl 4+3 with Tertiary 5's.

Incidentally I just did a HealingWell search for "Ductal" and it turned up 155 results. Not saying that there are 155 guys with Ductal, but it is clearly a topic of some interest.

Chas

Well I am certainly being treated just as if it were normal cancer. I did raise the issue with my Uro and he said it was "just a different type of cancer", though he did say it attributed to the agressive nature of my cancer.

Neither my RO or MO indicated any difference in treatment because of Ductal. In fact neither have mentioned it. I will raise it with the RO who I see again in October following my next PSA test.

Chas

I have Intraductal Carcinoma of the Prostate (IDC-P) which is a little different but rare and aggressive just the same. Very little data on treatment "standard of care" so my oncologists and I are taking an aggressive treatment path. Did not opt for surgery just to "de-bulk" knowing that over 80% come out with needing further treatment like RT, ADT, Chemo, etc... so why put myself through all that RP can do with SE's. On Chemo (taxotere) and Lupron now...after that is HDR Brachy and EBRT for 5 weeks daily. Right now PSA has been dropping but that's only an indicator of my 4+3 Pca but my T levels are increasing.
IDC-P has no marker (PSA) to indicate treatment success...only scans will show that. Have a PET and MRI scheduled between Chemo and Radiation to see whats going on regarding Mets... Also going to have genetic tests for BRCA2 since prognosis is really bad with IDC-P and BRCA2 mutation which I have a genetic predisposition for given my Russian Jewish heritage.

-Todd

When I was getting nuked I chatted with a fellow that was getting RT for penile cancer, don't know if that qualifies.

Dr WHO said...
...PS
I am also getting zapped. Is it normal to feel a burning sensation where they zap you.

My pelvic area got red and I lost the hair in the area but I don't recall feeling a burning sensation. I was feeling so lousy from the Lupron and tired from radiation maybe I just didn't notice. Also, I don't remember how many Gray units I was getting - you might have had more than I did.

Just dropping this here for you "lucky" few who might be researching ductal adenocarcinoma: looks like you have a decent chance of qualifying for Keytruda if you get to the advanced stage.

There has been recent FDA approval of Keytruda/pembrolizumab for any solid tumor with certain DNA mismatch repair genetic signature (MSI-H among others) in patients who've been through standard treatments etc.
"Oncotarget,Volume 7, Issue 50, 2016, Pages 82504-82510
Mismatch repair deficiency may be common in ductal adenocarcinoma of the prostate(Article)"
Small sample size, but for ductal adenocarcinoma, 40% had DNA mismatch repair defects.

Dear pwallace;

Yes the intraductal/Ductal club is very exclusive. Wish no one had to be a member. That said, there is some very good news with your husband's pathology report. First, it was caught early. It had not yet spread to the pelvic lymph nodes, bones nor other organs. Let me repeat, that is great news.

While both are rare, intraductal is not the same as ductal. However, I am not sure what the differences are. For that matter I am not sure even the doctors know. My biopsy stated I had intraductal. The pathology report however called it Ductal.

Since you did some reading you probably know that both types are rare (0.4% for Ductal), hard (not impossible) to treat or detect. For example, they tested a pathology slide of one of my lymph nodes that was "100%" cancer. Thirty percent of of the cancer did not stain for PSA. For that reason they follow my cancer with scans in addition to PSA tests. There are cases where people only followed it with PSA only to find out to late that it had spread. This is definitely a point to bring up with the medical oncologist.

The best primary treatment is what your husband had, surgery. They tend not to respond as well to either radiation or chemo when compared to normal prostate cancer. In other words it is harder to kill them.

As you probably already know, little research is spent on intraductal or ductal cancer. There are to few people with it and there is no money for big pharma. That means that you two must be your own advocates.

Sorry for the negative nature of some of the above statements. It deserves to be repeated, the best news is that it was caught before it migrated. You have every right touse the "cure" word. Listed below is a 2016 article dealing with these rare cancers which is actually easy to read. The title is aimed at Ductal but they also cover Intraductal.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779765/

Let's see if your husband can be totally cured so we can kick him out of this rare club!