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Hi I'm new to this site

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

I am now 53. I was diagnosed with Stage 4 colon cancer on September 9th, 2010 with mets to the liver. I had a colon resection (right hemicolectomy), 6 treatments of Folxfox, liver resection and 5 treatments of Xeloda. CEA went down after the liver surgery (March 21, 2011) to 10.1 and started rising when I started chemo. Now it is sitting at 28 and slowly elevating. My oncologist firmly believes that I have a recurrence because of the rising CEA. I was ordered a CT scan which came back clear with the exception of 2 spots on the left lobe of my lung which they believe could be atelectasis which they will be keeping an eye on. Now I am waiting for a PET scan.

Does anyone else have a rising CEA without having a recurrence of cancer?

Hart1212
Posts: 10
Joined: Aug 2011

I recently joined the site also, and my first question was the same as yours. What to do when you have a rising CEA, but NED on the scans. I am currently in the same situation as you waiting for the cancer to grow big enough so they can see where it is. I have also been told that my cancer is back, but they can't treat a number...so we are waiting...I am having a hard time with the not knowing.

I was DX with stage III in November 2009 and after a right heicolectomy and 12 treatments of Folxfox my CEA was normal. Since stopping the chemo meds (but still on Avastin) my CEA has been steadily raising (it is now at 61). My pet scans and a recent MRI have been clear (except for my ovaries, which they attribute activity to my pre menapausal age). The next step for me will be a laproscopic look. I'm scheduled for that this week. My oncologist thinks the cancer may have spread to the peritoneum and has sent me for a consultation with a surgical oncologist that specialized in the HIPEC procedure. I am going to meet with 2 of these specialist and see what they have to say. One ordered a high contrast CT and the other a high contrast MRI. It sounds like you already had the CT sca. Was it done with contrast?

I wish I could give you some answers...I am in the process of finding them out myself so I will update you as I find things out. Maybe someone can shed some light on our situations. I can tell you that I know what you are going through. Maybe you could ask if it is time for someone to go in with a scope.

Anyway, I wish you the best. Hang in there, you are not alone.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I just joined today because I want to hear how others are doing. I sometimes feel confused with what is going on and the treatments I'm getting and the path the doctors are taking. I put my trust in them because they are the experts. I was DX with stage 4 colonrectal cancer June 2009 with a really high CEA. Over time the CEA is really good >3.0. Get scans every three months, due again in Oct. The cancer went to the liver. I've been on chemo since June 09. Within the past month they took me off Avistin and tried Erbitux because I was having a hard time getting my plateletts over 100,000 (the number they told me they needed to be to get treatment. The first erbitux treatment caused wild with hard side effects...bad skin breakouts, hair loss, fingernails and cuticles breaking,ect. I had two treatment with Erbitux and today went to get treatment but they stopped it because they said I was K-ras mutated. Apparently doesn't work. So now back to drawing board. Has anyone heard about this?
Thanks and bless everyone
Jeff

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Thanks for the insight.

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Thanks Hart1212.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

As with everyone who joins this site, I'm sorry to hear of your diagnosis (DX). I was DX in Feb 2004 with stage IV colon cancer. I had mets to my liver and my lungs. It's not uncommon for it to take that path when it's caught late as was my case and it seems to be yours too.

CEA can be a reliable tool but it's not always accurate as to what is going on inside of us. For some, it's natural for it to vary. If you happen to smoke, that can raise it. For others, a rise in CEA does mean growth but that again, is not always the case.

I suppose it could be atelectasis (which I had to look up!) or something that is nothing (if that makes sense) or it could be something that is something. Like I mentioned before, it's not uncommon for there to be mets in the lungs and liver. IF that is the case and they are mets (which I hope they're not), they can be treated a variety of ways. If you're sticking with the chemo route, there is Erbitux which is one of the "newer" targeted chemo's and sort of a "chemo-lite" compared to other chemo protocols. I have been on that for 4+ years and it's kept the majority of the spots I had in my lungs from growing or from growing fast. I had my last RFA in Dec 2009 on my left lung(?) and there was another questionable spot that they weren't sure of. I went back on Erbitux (or that and irinotecan) and the small spot grew ever so slightly. I've always gotten CT scans every 3 months. Now that spot is on the radar and will soon be taken out via RFA. I'll go back on Erbitux and wait and see.

While some spots can be located in areas that are hard to get to, others can be removed using a technique called RFA (Radio Frequency Ablation) where they stick the tumor with a needle and heat it up and that dissolves it. I've had that done 3 times in the past 4-5 years and 2 out of the three times I went home the same day. The first time I had it done I stayed overnight just for observation. If it is something and can't be removed via RFA, they can often do wedge resections which takes out a wedge of the lung. That's an operation, the RFA is a procedure.

I'm not sure if I'd call it a recurrence. I had the colon cancer plus liver mets plus lung mets all at the same time which is very common, but I'm not your oncologist and I'm not you. I would certainly make sure that you and your Onc keep and eye on the spots. Hopefully it is only atelectasis and nothing serious to worry about.

I certainly remember how frightening this all was at first. It still can be years later. For me, after a while you take things in stride and as they come. There can be so many "what if's" with cancer but I've found it easiest to deal with the "what is" instead.

I hope this was helpful.
I'm certainly not trying to frighten you but you don't want to blow it off.
-phil

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Despite I can't help you in your question I'm sure her u will find answer to most of your requests !
Welcome again!.
BtW, what's your name?.
Hugs. Pepe.

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Hi,my name is Verna.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

family!.
Hugs.
Pepe.Barcelona.

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Nice to meet you too Pepe.Love the name!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

As you can guess from my avatar. I have found over the years that those with high cea counts initially probably have the best chance of monitoring ca activity via cea. At st3 6/13 nodes my cea was only 2.8 now it barely registers. Nice to meet you Verna sorry you have to be here,Ron.

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

And all women that fish. Welcome to the board, hope your CEA drops and the scans stay clear.

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Thanks Kenny.Cancer stopped me from doing some salmon fishing this summer but theres always next year.

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Thanks Ron.

fisherwoman's picture
fisherwoman
Posts: 15
Joined: Sep 2011

Thank you for the reply and nice to meet you.

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