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Posted 4/3/2013 12:32 PM (GMT 0)
Hello, we are new to this.
My husband was just diagnosed with Prostate Cancer, but seems not the 'good' one.

We are pretty sure he has the IDC-P.

He just had his biopsy 2 weeks ago, nuclear CT last week, this Friday MRI and first consult with another Urologist at UT Southwestern in Dallas.

His first Urologist just informed him the other day that the CT showed a 'mass' on his pancreas, but says that it could be nothing...

We are shell-shocked right now.

We live in The Colony, TX, and any information / referrals anyone can share would be greatly appreciated.

God bless all, thank you

Christine

Christine: Gave you thread a title. -- PeterDisAbelard, Moderator

Post Edited By Moderator (PeterDisAbelard) : 4/3/2013 8:34:01 AM (GMT-6)

Posted 4/3/2013 12:36 PM (GMT 0)
Hi Christine, let me be the first to welcome you and your husband. You will find tremendous help and support here, from those that have "been there, done that" when it comes to dealing with this beast.

To help start you out, it would be very helpful for us, to help you, if you could provide more background and details on your husband. You can create a "signature" in "My Profile" under the tab "Edit Profile."

Again, welcome and I'm sure that others will be here soon.

Best to you both.
Posted 4/3/2013 12:49 PM (GMT 0)
Welcome.
Factors to consider include the PSA number, the Gleason score, whether a nodule was felt on the digital rectal exam (DRE), PSA history.
Did he have a biopsy or prostatectomy?
The mass on the pancreas might not have anything to do with prostate cancer.
IDC-P can mean more aggressive cancer, as you suggest.
Good luck to you.
Posted 4/3/2013 1:00 PM (GMT 0)
Hi Christine,

The IDC is a billing code that really doesn't say much about the cancer as to the extent or aggressiveness. What will be helpful for us to comment would be information from the biopsy report. Included in the most important information is: how many of the cores had cancer, the Gleason scores (which are a sum of two numbers like 3+3, 3+4, 4+3, and so on up to 5+5), his PSA, and any history of PSA tests in the past, and any symptons he has been having like urinary problems, bone pain, etc. You will see this information listed in most of our signatures at the bottom of a post to help guide you in developing your own signature.

Take a deep breath and relax. You are in the very important discovery stage where you must learn as much as possible about the type and extent of the cancer.. The second stage will be to get multiple opinions from several different doctors representing the various treatment methods including surgery, radiation, and potentially active surveilance. Only then can you make treatment decisions and start treatment. It is normal for this process to take 30-90 days and most all men diagnosed with prostate cancer cam easily take that much time without adding to the risk. There are many experienced and helpful people on this board that are ready to assist you.
Posted 4/3/2013 1:37 PM (GMT 0)
Welcome Christine. Best wishes to you both.

Don
Posted 4/3/2013 1:56 PM (GMT 0)
IDC-P may also stand for Intraductal carcinoma of the prostate
Posted 4/3/2013 1:59 PM (GMT 0)
Welcome, Christine.

Not much else to add, other than to say do as much research as you can on the Beast. Knowledge is power. Read as much as you can get your hands on. Check out your local library. I was able to find Patrick Walsh's and Gerald Chodak's books at my library, while I waited for them to arrive in the mail. Be wary of what you find on the Internet. There is much good info out there; but there is also a lot of "fringe" stuff, as well. Run it by the people here on the Forum as a check.

One other thing that was helpful to my wife and I; keep a notebook of questions and any answers you get from your doctors; or books; or this Forum; etc. If you or your husband are like me, I would think of a question 10 minutes after I left the office. Thankfully, I would write it down right away for the next visit; or for a phone call.

Best of luck to you!

-Bob

 

Posted 4/3/2013 3:01 PM (GMT 0)
Hi Christine. Sorry you are here, but you will get some good advice. You might consider a trip to MD Andersen, for some advice/second opinion. There are some very good hospitals in Dallas, of course, but you have one of the best cancer centers in the world -- with enormous expertise in prostate cancer -- a 4 hour drive away. This could be particularly worthwhile if your husband has a more agressive strain of prostate cancer. Best wishes, Medved
Posted 4/3/2013 3:32 PM (GMT 0)
Welcome Christine
Sorry you had to find us but we are glad you did. You have just found many brothers and sisters that will help you through this stressful time in your life.
I moved to Florida in 2003 from Lewisville, TX, just down the road from you! I used to see a uro in Lewisvile, Dr. Goldberg. He has written a couple of books on PCa.
As others have said, try to post some of the biopsy results including Gleason score and PSA history so we can help you further.
Good luck to both of you on your new journey. We have all walked before you and will be here to help you.

Bill from Florida
Posted 4/3/2013 3:50 PM (GMT 0)
Christine~
Praying for you and your husband!!
Posted 4/3/2013 4:00 PM (GMT 0)
Sorry to meet you this way. My husband was diagnosed in November with bone mets but no spots on any organs that we know of. I can totally relate to the shell shock but since then life has gone back to a much more normal existence. We have flurries of talking about the cancer when we have upcoming appointments or something but other than that we try to ignore it

Nancy
Posted 4/3/2013 4:45 PM (GMT 0)
Christine, knowing that a family member has cancer is devastating but like the other folks said get second opinons will be the best thing you and your husband can do as well as learn as much as you can about this terrible disease here you are going to find a lot of support from other fokls with a lot of knoledge about PC. My prayers for you and your husband.
Beleive and trust in God.
Leo
Posted 4/3/2013 5:38 PM (GMT 0)
Christine...I am sorry we have to welcome you and your husband to this club. However, the best thing about it is that you couldn't ask to be in a club with a better group of people. We are here to help and listen. Our prayers are with you and your husband.
Posted 4/3/2013 5:50 PM (GMT 0)
Welcome Christine to our forum. It will help if we can get more information about the diagnosis of your husbands PC. First thing there is no such thing as the "good" kind of prostate cancer, it is all bad just some are worse than others. Hang around long enough in tis forum you will soon learn this. From his biopsy there should be all the information we need to offer our help and opinions. There should be a Gleason score from 6 to 10 and the number of cores that came back positive for cancer cells and the volume of each core. Next do not panic  there are many guys in here with the worse PC numbers G8 & G9 who have lived many years managing their cancer with treatment.

BTW I am very familiar to the Colony in Texas, my family and I lived in Carrollton for many years, my 2 children graduated from Newman Smith HS and my daughter and her family currently live in Trophy Club. My wife and I are now living in Alabama. We have a several good members in this forum who live in the Dallas area and they should be able to help you with finding good facilities and clinics for cancer treatment close to you.

Terry

Posted 4/3/2013 11:05 PM (GMT 0)
Wow, you guys are amazing and I am truly touched by all your rapid, informative, and concerned responses.

So, to answer the most popular question most of you had, let me try to list some stats...I just picked up the report from the Urologist today - we haven't been able to meet up with him to discuss it

PSA 4.40

Biopsy:

#1-5 = benign

#6 (left apex)  = adenocarcionma (gleason 3+3=6) 60% of specimen

#7 (rt base  )  =      "                 (gleason 3+4=7) 10% of specimen,gleason pattern 4 comprises 20%

                                                                      of the cancer

#8 (rt mid)      =      "                 (gleason 3+4=7) 30% of specimen, w/partial ductal adenocarcinoma  

                                               features. Gleason pattern 4 comprises 20% of cancer, high grade

                                               prostatic intraepithelial neoplasia. Immunostain for basal cell-specific

                                               high molecular weight keratin (34BE12), racemace and p63 supports

                                               this dx

#9 (rt apex)    =       "                 (gleason 3+3=6) 50% of specimen. Hight grade prostatic intraepithelial

                                                neo. (34BE12)

#10(rt lat base)=       "                 (gleason 3+4=7) 50% of specimen (ductal subtype), gleason pattern

                                                4 comprises 40% of the cancer. Perineural invasion. High grade

                                                prostatic intra. neo.

#11(rt lat mid)=         "                (gleason 3+4=7) 20% of specimen. Gleason pattern 4 comprises 40%

                                               of the cancer (34BE12)

#12(rt lat apex)=        "               (gleason 3+4=7) 80% of specimen w/ partial ductal adeno. features

                                               Gleason pattern 4 comprises 40% of the cancer. Perineural invasion

                                               (34BE12)

The CT detected a 3cm low-density mass on his pancreas and a 1.8cm nodule in the rt adrenal gland.

We have an MRI scheduled for this Friday.

This is pretty lengthy - just copied it right from the report; wasn't sure how to abbreviate/condense.

Bill, from Florida, we have Goldberg as well - small world

 

Posted 4/4/2013 1:09 AM (GMT 0)
Christine,
Welcome to the HW family. I'm so sorry that you have to be here but it's a wonderful place for information and support. You will find prostate cancer treatment like a roller coaster ride, lots of ups and downs. Know that everyone here will help in any way they can. The more knowledge you acquire about PCa the better decisions you will be able to make.

Although a dx of cancer is frightening don't let it ruin every moment. You will get through all this.

I'm sure some well versed members will comment on the report.

Chris
Posted 4/4/2013 1:52 AM (GMT 0)
Christine,

We had another lady about a month ago whose husband had "ductal" prostate cancer -- apparently more advanced than your husband's -- but she was only here briefly.

Here is her thread:

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

One thing that might be of interest to you is that she said that her husband had gone to MD Anderson in Houston where she said they had doctors with experience treating the somewhat rare ductal form of PC. Google maps says Houston is a four hour drive for you.

I pinged the old thread to see if the user (nccajun) is still getting notifications when someone posts a reply.
Posted 4/4/2013 2:02 AM (GMT 0)
Just read that biopsy report, that's quite a bit of Gleason 7 cancer going on in the 7 positive cores. He will definitely need a well thought primary treatment plan for sure.

david
Posted 4/4/2013 3:03 AM (GMT 0)
Christine, it appears from the biopsy that your husband's PCa is quite spread (7 out of 12 nodes). The Gleason score of 7 is in the middle range and his PSA is not as high as I thought it would be considering the spread. I think MD Anderson is a good place to get the proper treatment that can also deal with the mass in his pancreas. I live in Austin and have taken my wife there for treatment.
Posted 4/4/2013 5:41 AM (GMT 0)
Hi Christine,

Ed C. is right that the Gleason 7 is middle range for aggression. But it is still much better than Gleason 8s through 10. This is just a general rule, but it seems like PC tends to metastasize with PSAs of 10 or more. Your husband's PSA of 4.4 is NOT terribly high.

So there may be a very good chance that the cancer has not gone anywhere yet. It is a fact that PC is "multi-focal," which means that more than one tumor tends to form at the same time within a prostate. The average is around three and as many as seven individual tumors are sometimes found.

So this could be the case with your husband. This is probably why so many cores were positive. However, if still confined to the prostate (or even just outside of it), it can still be very curable.

I'm not very knowledgable about ductal cancer and perineural invasion, but others here can tell you more.

One other notation regarding the Gleason 7. It is MUCH more "desirable" to have a 3+4 instead of 4+3. That's because the dominant type of cancer cell found in a core is the first number listed. And, of course, a 3 is less aggressive than a 4. So your husband's cancer is mostly dominated by a low-risk type with a somewhat higher grade as the secondary type.

Treatment of some type should probably be done in the relatively near future -- but you probably have great reason to hope for a cure.

Wishing you both the best!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.
Posted 4/4/2013 12:28 PM (GMT 0)
Hi again Christine, and thanks for providing the stats. I would agree that with 7 of 12 cores positive and with the %'s being what they are that you guys should be doing your research for treatment. I don't know a lot about "ductal" prostate cancer, but from what I understand the relatively low PSA of 4.4 is something common in this form of PCa - and because of that in many cases goes unnoticed until it gets really bad. In your husband's case it seems like they caught it early enough to be treated well.

No need to panic, yes this will need to be treated but at this point I would simply suggest that you garner all of the information you can on the various treatment options and practitioners as you can.

As you have seen there's lots of experience and support out here - so stay with us and we will with you.
Posted 4/4/2013 5:36 PM (GMT 0)
Hi Christine,
It is a small world. Dr. Goldberg did my first biopsy in Jan. 2000, it was negative at that time. He told me to keep checking my PSA frequently. I didn't now here I am.

The hardest part of incontinence for me was cutting back on Tex-Mex.
The spicey food opens the flood gates.

Good luck to you and hubby,

Bill from Florida
Posted 4/19/2013 9:21 PM (GMT 0)
Hi Christine,
My husband was also diagnosed with ductal PC. We've traveled to MD Anderson in Houston from NC, and it was the best thing we could have done. Our oncologist, Dr. Tu, has previous and current patients who also have ductal. As you've found out, it's hard to find anybody who has first hand knowledge of this kind.

I think that Danny's is somewhat more advanced than your husband's, as his has spread to the bladder, urethra, ureter, and possible lymph nodes. So far, he is responding well to chemo, and we hope that in a month or two, they will schedule his surgery to remove prostate, bladder, clear out urethra and ureter, and look at the lymph nodes. Next month's endorectal MRI will dictate surgery or not.

Since you live in Texas, I would defiantly look into getting treatment there. As with all large hospitals, actually talking to a real person can be frustrating, but the care level is so much better than the other hospitals we've been to. And Dr. Tu is a great doctor.

Good luck to you and your husband. I know how scary and frustrating this is.
Posted 4/21/2013 1:54 AM (GMT 0)
Hi nccajun,

Thanks for the info / update about your husband - it does indeed look like you have your hands full - the best of wishes to you both with the treatments, as you'll be in my thoughts till his next MRI.

We have a surgery date scheduled for 2 May, but this is just to address the mass in his pancreas first, as that is the current priority.

We have Dr. Mansour at UT Southwest in Dallas (supposed to be one of the top pancreatic cancer surgeon/oncologists)??

He will go in with the scope first and we'll pray there is no other cancer in the surrounding organs/tissues, or they will close him right up and then do chemo....on the other hand, if coast is clear, he will remove the part of the pancreas with the mass, and if all heals well, proceed at a later date with the prostate surgery.

It will be a nerve-wracking 2 weeks till surgery day.

 

Posted 4/22/2013 1:51 PM (GMT 0)
I believe the waiting is the hardest part. There's too much time to think. Ya'll will be in my prayers. Keep us updated on the surgery.
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