Peritoneal Carcinomatosis

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 1
Joined: Tue Jul 28, 2015 10:05 pm
Facebook Username: Jennifer.minckler

Peritoneal Carcinomatosis

Postby TTU93mom » Wed Sep 09, 2015 10:11 pm

Hello all,

This is my first post here but I have lurked for quite a while. I have some questions that I haven't found answers to yet. Here is our story in a nutshell... Husband was diagnosed last October (2014) with colon cancer with mets to the peritoneum/omentum. His MDA oncologist said he was filled with peri mets and had it "stem to stern". He said his disease was way too extensive to even consider surgery. But no mets to liver, lungs, etc...So he did 6 rounds Folfox+Avastin. CT showed growth so he was switched to Folfiri+Cetuximab. He did 19 rounds of that and CT was the same-showed no growth or shrinking. In the meantime he had another colonoscopy bc they were afraid of blockage and wanted to get a better look. They found the primary completely gone. In Aug he had a PET that showed no metabolic activity but the CT showed his belly is still full of disease. He is now on just the Irenotecan for maintenance until the end of October. The local onc says this is great news. The MDA onc says they don't use PET to measure this type of disease and says he is still very much full of cancer. Oh and blood looks good but CEA has been rising. Its at 5 now. Was at 2 when diagnosed.

1. Can the PET show no hyper metabolic activity and yet still have active cancer?
2. How important is the CEA?
3. Can the CEA rise but the cancer be inactive?
4. Anyone else out there with CRC with peri mets only? No mets in liver, etc??

Thanks for reading!

Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: Peritoneal Carcinomatosis

Postby CM35 » Wed Sep 09, 2015 11:48 pm

Have you looked into HIPEC? As far as aggressive treatment of peri mets, HIPEC is probably at the top of the list. I have no personal experience with MDA, but from what I understand, they have very limited circumstances in which they recommend HIPEC. It sounds like your husband has extensive disease, so he is probably outside their parameters. Again, I have no personal experience with MDA, but that is what I have heard.

I have had peri mets. I have had HIPEC. I did not have extensive disease, but I have also had liver mets. Perhaps an outside opinion wouldn't be out of line. You never know, with an aggressive surgeon...

As for the reliability of PET... I have had negative PETs, right before surgery, and there were indeed tumors inside me. If cancer is currently beaten down by chemo, there can be little to no uptake in the images. Take away the chemo, and a few weeks later will probably be a different story.

CEA is a good marker for some, not for others. So, how important it is, is kind of dictated by the individual. For me, if my cancer is growing, my CEA skyrockets. It will drop into the normal range if my cancer is either surgically removed, or beaten down by chemo.

Best wishes, any questions, please feel free to ask!
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

Nik Colon

Re: Peritoneal Carcinomatosis

Postby Nik Colon » Wed Sep 09, 2015 11:51 pm

I was going to mention HIPEC also, although I don't have personal experience with it

Posts: 31
Joined: Sun Jan 25, 2015 2:36 am
Location: WA

Re: Peritoneal Carcinomatosis

Postby Robinf » Thu Sep 10, 2015 10:58 pm

I had peri mets with no liver lung involvement. I also went the HIPEC route, my surgeon is now at MDA - Gary Mann. Loved him btw!

I have had a reoccurance so HIPEC isnt a silver bullet, but its a shot.

Good Luck!
Dx stage 4 Sept 2014 (MSS, KRAS Mutant)
Resection with peri mets identified visually during surgery
Nothing visible on CT
12 rounds FOLFOX w/ Avastin Nov - Apr 2015
Still nothing visible on CTs
HIPEC May 2015
7/2015 - 5 new spots on CT, PET confirmed 3 mets
8/12/15-Begin 12 rounds FOLFIRI
10/21/15 Scan - peri mets stable, 1 liver stable and 1 growing
12/4/15 - RFA of liver met
2/24/16 - scan was stable/shrinking moving to Xeloda/Avastin

Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Peritoneal Carcinomatosis

Postby PainInTheAss » Fri Sep 11, 2015 2:05 am

My Onc had explained that 1 in 5 (1 in 10? Sorry, chemo brain) recurrences don't affect CEA. It seems that a lot of Peri mets are found during surgery rather than during a PET, so it can and does happen like that. At least his are actually appearing on a scan. I've always worried I had the perfect storm of peri mets that don't show up on scans or affect CEA. It's like a silent, deadly cancer that is the scariest of all.

That's great that the original tumor responded well to chemo. Keep in mind that mets are mutated, so the peri mets may not respond even if the cancer in the original tumor does.

I'm all for thinking positively most of the time, but not when it comes to the possibly of denying a dangerous situation. I think a second opinion is in order, especially from a medical team that may have more positive experience with HIPEC. If he is indeed NED, they will open him up and find nothing there. Believe in the best, but don't avoid the truth.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: No registered users and 5 guests