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Guess I'm a G9'er (Ductal PCa, anyone else?)

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Posted 8/8/2014 4:00 AM (GMT 0)
Got the results back today from my biopsy. What they initially thought was Bladder cancer came back as a very rare form of PC known as Prostatic Ductal Adenocarcinoma and Prostatic Ancinar Adenocarcinoma, Gleason score of 4+5.
Making arrangements to have an RP as soon as possible.
Just curious if anyone on this site also has this type of PC being it is such a rare form .4% of all PC cases.

Changed your title to see if we can't get more specific information. -- PeterDisAbelard

Post Edited By Moderator (PeterDisAbelard.) : 8/7/2014 10:38:39 PM (GMT-6)

Posted 8/8/2014 4:17 AM (GMT 0)
Welcome to HW. Sorry about your results.

I know we have at least two members here with Ductal Adenocarcinoma. I can't remember their names at the moment, but will see if I can find them.

Did you do a search on here for "Ductal Adenocarcinoma?

Also, if you put "Ductal" in your title, the others might see it quicker. Just a thought.

Best of wishes to you.
Posted 8/8/2014 4:19 AM (GMT 0)
Welcome to the forum guy, sorry you need to be here but glad you found us.

We have lots of G9'ers here. I am one of them. And a few guys with ductal prostate cancer, as I recall. Hopefully they will pipe up.
Posted 8/8/2014 4:24 AM (GMT 0)
Squidly -- Sorry you had to join the club nobody wants to be in :(
Welcome though and I'm glad you found us.

Take a breath and don't fret, G9 guys do quite well with treatment. IMHO I would not rush to have an RP. It may be that surgery is not the best course for you. I would think you would want to talk with a medical oncologist and get a second opinion and have some imaging done: MRI, bone scan, color doppler perhaps. Get a second opinion on your biopsy slides. What ever treatment you decide, get it from the most experienced practitioner available to you - this is crucial to your outcome.

I'm sure our crew of G9s will weigh in soon.

Best of luck and keep us posted on your progress. -- Tigerfan
Posted 8/8/2014 4:34 AM (GMT 0)
I found a couple of links you may be able start with. One of them has additional links to outside sources.

www.healingwell.com/community/default.aspx?f=35&m=2660563&p=1
www.healingwell.com/community/default.aspx?f=35&m=2691244
www.healingwell.com/community/?f=35&m=2185245
www.healingwell.com/community/default.aspx?f=35&m=2525655

Some links may be more useful to you than others. I didn't scan through them completely for content.
Posted 8/8/2014 4:35 AM (GMT 0)
I have had 1 MRI, a CT and doing a bone scan Monday.
The Dr seems to think it has not spread at all yet. I'm kinda in the camp that believes just get it removed. Reading on this particular PC, its a pretty aggressive kind and I really don't want to take any risks of it spreading. I'm 44, in fairly good shape and overall I feel great. I guess in a way I'm lucky I had some of the symptoms that this PC has, otherwise it might have gone undetected for a while. With this PC, the PSA scores do not elevate ( mine is right around 2). Thanks for the welcomes BTW, it is already helping a great deal.
Posted 8/8/2014 4:36 AM (GMT 0)
Squidly,

Member nccajun's husband was treated for ductal prostate cancer and, when last we heard from her a few months ago he was doing well. He was treated by Dr Janet Tu at MD Anderson in Houston.

Here is nccajun's profile page (you have to be logged in to see it all) and her last ten comments, including some discussion of MD Anderson and Dr. Tu.

www.healingwell.com/community/profile.aspx?f=35&m=2981109&p=55214
Posted 8/8/2014 4:40 AM (GMT 0)
I agree with Tigerfan53 about speaking to a medical oncologist.

I'm sure someone will be along with some medical links that you may find of value.

I just posted the ones above so you could see which members posted about having this type of prostate cancer.

Best of wishes.
Posted 8/8/2014 4:47 AM (GMT 0)
In my search, I missed the most recent post.

www.healingwell.com/community/default.aspx?f=35&m=3151507

Tall Allen lends some information on that link.


*Edited to post correct link.

Post Edited (MsWorryWart) : 8/7/2014 11:06:28 PM (GMT-6)

Posted 8/8/2014 4:49 AM (GMT 0)
Squidly-

Coincidentally, another poster just opened a thread about it that may interest you.

www.healingwell.com/community/default.aspx?f=35&m=3151507

My understanding is that it often attacks the urethra, so that an RP may be problematic. Talk to a doctor with experience with this if you can.

- Allen
Posted 8/8/2014 4:59 AM (GMT 0)
Yes, that is why they initially thought it to be BC. The tumors looked identical to those found in the bladder but were right near the ejaculatory ducts in the prostate.
Posted 8/8/2014 5:16 AM (GMT 0)
Squidly,
I'm also G9 and still in my 40's. Welcome to HW.
It's great to hear that you may have detected the PC early, even though it is G9.
I don't know about ductal, but I can relate with treatments that include HT, surgery, chemo, and now radiation. You have time to gather information and make good choices about your care. Find the best care available to you and ask to be referred there if you're not there already.
Good luck with the scans and in selecting your treatment options. We'll be here for you when you need information, a pep talk or just want to vent. Take care and keep us informed!
Keep the faith,
Posted 8/8/2014 12:40 PM (GMT 0)
Husband has ductal, diagnosed in June of 2007.
Feel free to e-mail me, my husband would be happy to talk to you about his experience to date.
Amy
Posted 8/8/2014 2:25 PM (GMT 0)
Welcome aboard Squidly, sorry you had to join the club.

We have a lot of G9'ers here, in fact they have their own Elite Club.

Good luck with whatever treatment plan you decide.

Bill from Florida cool
Posted 8/8/2014 2:45 PM (GMT 0)
Squidly, let me add my greetings, welcome and sorry you need to be here but very glad you found us. I'm a G9 and relatively young for this, 56 now. It's so shocking, and you may find it hard sometimes just to keep breathing. It will get easier to bear over a couple of weeks, and it'll become your new normal. You have a lot of research to do in a short time, and you've come to a good place to ask questions. There are some really knowledgeable people here, even though we're all just folks with PCa.

We have a Gleason 9 Crew thread that's been running for a while now, and I've added you to the roster. A lot of people have posted there, and you may find it encouraging to see how many there are and how well so many are doing.

Here's a link to that thread:
www.healingwell.com/community/default.aspx?f=35&m=2863652

All the best, and do feel free to ask, share, vent, whine, whatever you feel like you need to do. Everybody here has been where you are to one degree or another; we're here for you.
Posted 8/8/2014 2:50 PM (GMT 0)
Squid:

Is this the same as small cell PC? I think that does not produce much PSA.

Where do you live?

If you can travel to Marina del Rey, Ca., then Scholz/Lam would be excellent. Their office is very responsive.

Mel
Posted 8/8/2014 2:56 PM (GMT 0)
Another welcome from a G9 that's doing pretty well. I would second Mel's comment that Drs Scholz and Lam in Marina del Rey would be helpful if you're nearby. (In fact, they'd be helpful even if you're not nearby.) But bottom line I would seek out oncologists that have experience in this particular type of cancer. No reason not to have the very best working on your case.

Keep positive and good luck to you!

Michael
Posted 8/8/2014 9:13 PM (GMT 0)
Welcome form another G9.

Could not tell were you live.

I live in a small town in middle of nowhere west central Florida and my lesson learned was to not rely on small town imaging.

So if you too live in a rural area, suggest you get an F-18 sodium bone scan from AZ Molecular Imaging in Phoenix (Dr Fabio Almeida) or any of several sites that offer them. This scan is much less subjective than the regular bone scan scintigram a/k/a Rorshack test.

LupronJim
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