The Colon Club

I know I shouldn't be thinking this way, but tomorrow is the CT scan my urologist ordered (to further investigate the blood in my urine) and my mind has been going to dark places. So with that said...if you've been diagnosed at some point with peri mets, did you notice any symptoms? Did your CEA (or any other tumor markers) rise? Did they show up on CT or PET?

Thanks so much

the only thing i can mention her taking from our chemothology ( Onc. ), he mentioned that mets are to small to contribute to the CEA thats why your Dad CEA was going down as the big tumor is responding but not the mets, too small to be seen

I have peri mets, have no symptoms. Some have been too small to be seen on a scan, others have been visible. My CEA isnt a good marker for me. Good luck with your scan.

I've had/have peri mets. No symptoms whatsoever. Mine have always been in my pelvis. Ranging in size from sub-cm nodules to a 9 cm ovarian met. Never had any pain or any other issues. Most have been picked up on ct, except those that were involved with adhesions, and they were very small. My CEA is very sensitive. When my cancer is growing, regardless of location, it goes up. I know how stressful scanxiety is, hang in there... Hopefully it's nothing!

lpas wrote:Ibut tomorrow is the CT scan my urologist ordered (to further investigate the blood in my urine) and my mind has been going to dark places. So with that said...

Thanks so much

OK. Blood in urine is a different story. Recently, I was suppose to have blood in my urine also. Bladder infection?? A PA was ready to send me to a specialist regarding my "bladder cancer" when I said, I want my PC Dr involved. He did a urine test and said I was fine. No blood, no infection. When I asked what happened between yesterday with the PA and today, no infection, he said that is the difference between a PA and an MD. PA did a dip stick test, an MD looks at the actual urine and separates the good bacteria from the bad.

Hope it is that way for you too. (((HUGS))) to you.

Lee

Hi Ipas,

I can pass on my mother's experience with peri mets- they caused her ascites so it was very obvious. Also her CA 19-9 was VERY elevated (i think about 1800-ish)

Chemo killed them off and her CA 19-9 was normal last time they check it. Ascites is no longer there. Her CEA is still elevated because of her liver mets it seems.

Also, when she had a LAR resection they could not see any traces of them, and also in the pathology. Surgeon and oncologist were stunned.

I hope this reassures you a little bit.

Veronica

4 weeks ago peri mets showed up in my wife's latest CT scan. Prior scan 3 months earlier they were not visible, and she had been stable for about a year on her 5-FU/Avastin maintenance therapy. She gets that every three weeks. However her CEA had started to slowly climb between these scans from 2.3 to now 5.4 so her CEA actually did show something going on. Other than that no other symptoms. Today she starts FOLFIRI and Avastin I think. We will see if this session of Whack a Mole is effective to knock things down again. Her Liver Mets continue to show no additional growth. The spots on her lungs continue to do nothing at all for going on 28 months (Likely not mets), and the Spleen met is still no longer visible. We hope she responds well to the FOLFIRI and that she tolerates that as well as she had FOLFOX/Avastin and then just 5-FU Avastin.

GrouseMan

lpas wrote:I know I shouldn't be thinking this way, but tomorrow is the CT scan my urologist ordered (to further investigate the blood in my urine) and my mind has been going to dark places. So with that said...if you've been diagnosed at some point with peri mets, did you notice any symptoms? Did your CEA (or any other tumor markers) rise? Did they show up on CT or PET?

Thanks so much

Lpas, i doubt blood in urine is a symptom of peri mets. Try as much as possible to convince yourself this is not cancer related. You have nothing until a doc says so. I'm trying to do the same with my lung micronodule. But seriously, it does not sound as peri mets.

Good luck with your scans Ipas!*hugs* I know scanxiety all too well. It's hard for me to pull my mind away from going to dark places.*hugs*

Does anyone know if there are certain features of one's colon cancer that makes it more likely to spread to peritoneum? For example, colon travels to liver, rectal to lungs... The fear of peritoneal spread keeps me up at night because it seems like there are less options for this spread.

I think its a matter of the colon tumor penetrating outside the colon. My wife's had already penetrated into the mesentery I believe and as a result there is the potential I think to have peri mets. When she was resected, they didn't see any but 25 months post surgery the peri mets finally got big enough to see in a CT scan. Funny thing is the 5-FU/Avastin maintenance was holding the Liver and Spleen mets stable. No new growth there! We hope the FOLFIRI/Avastin every other week will clobber these. My wife's cancer was pretty advanced when diagnosed. But after resection of her primary she has tolerated Chemotherapy very well. I was expecting the worse when they switch was made to Irinotecan but she said today after her first infusion with it that its no worse than what she has been going through so far. Everyone makes it sound so much worse than FOLFOX. She complained more about being hungry than anything else as they didn't have their act together today at the clinic and were very late getting her started today.

I suspect as with everything else concerning this disease everyone is going to have different times/locations of recurrence or METS, and react differently to the drugs. YMMV

GrouseMan

CLD wrote:Does anyone know if there are certain features of one's colon cancer that makes it more likely to spread to peritoneum? For example, colon travels to liver, rectal to lungs... The fear of peritoneal spread keeps me up at night because it seems like there are less options for this spread.

Sorry to say that but a satellite tumor deposit in mesentery looks like the peritoneal spread. I may be wrong though.

chrisin wrote:

CLD wrote:Does anyone know if there are certain features of one's colon cancer that makes it more likely to spread to peritoneum? For example, colon travels to liver, rectal to lungs... The fear of peritoneal spread keeps me up at night because it seems like there are less options for this spread.

Sorry to say that but a satellite tumor deposit in mesentery looks like the peritoneal spread. I may be wrong though.

Chrisin,
pathology report specifically says "nonperitonealized" area of mesentery. I would agree with you though, and have spent countless hours trying to figure this out online. Oncologist and surgeon were never very helpful or thorough in their explanations when I asked these specific questions. After 10 months I am still not fully understanding this.

I know this is hard advice to follow, but if I were you I would not waste my mental energy on worrying about peritoneal mets when you have no idea whether you have them or not.

It's true that there are rarely any symptoms until much later in the advancement of the cancer spread regarding peritoneal involvement. My husband had them, and he had no symptoms of them until the last 6 months - then he had bloating, mild discomfort, and ascites. He certainly never had blood in his urine, however!

My husband was told from the get-go that it was likely he would have mets in the peritoneum since his colon tumor broke through the colon wall before he was diagnosed. The onc did not say it was 100% likely, but eventually they found evidence in the CTs. I think it took at least 16-18 months after his surgery before the oncologist stated they were there definitively. As someone else noted, they don't show up on CTs for a long time. My husband's CEA began to rise a bit around the time they saw the peritoneal mets. It is a tough place to see the cancer spread to. Sadly, chemo is not as effective on the peri mets as it is on liver/lung tumors.

Good luck! I know how hard it is not to obsess about things.

Val*pal wrote:My husband was told from the get-go that it was likely he would have mets in the peritoneum since his colon tumor broke through the colon wall before he was diagnosed. The onc did not say it was 100% likely, but eventually they found evidence in the CTs. I think it took at least 16-18 months after his surgery before the oncologist stated they were there definitively. As someone else noted, they don't show up on CTs for a long time.

Ugh! As a fellow T4-er, they said peri mets are more likely than if I were a T3 case, but still gave me a 70%-ish chance for cure.

So hopefully your husband's onc was a pessimist and mine is a realist