Elevated CEA and clear scans.

[zx10guy]

I waited till I got the final news before posting this thread. Hopefully this thread will help others that may be in a similar situation as what I experienced.

Summary: Had my 6 months checkup being 3.5 years from diagnosis. CEA from blood drawn on 6/29 came back at 9.7. CEA retested on 7/11 came back at 11. CEA retested on 7/27 came back at 9.7. CT done on 6/8 came back clear. PET done on 7/13 also comes back clear. Colonoscopy done on 7/20. Doc finds a polyp in the opening of my appendix. Biopsy done on what could be seen and comes back as high grade dysplasia. Surgery scheduled for 7/29. Laparoscopic done to remove a section of small intestine and large intestine to encompass enough margins around the appendix. Received news from surgeon today 8/3, no cancer found, lymph nodes were clear, and polyp was precancerous.

The long part. I got the notice to do my 6 month checkup from my oncologist's office and to have the CT done before my office visit. I went and got my CT done immediately and as I always do got a copy of the scan images and was able to get the radiologist's report that afternoon after having the CT done. I'm breathing easier now as it looks like I'll make it to 4 years NED. Had my office visit with my oncologist on 6/29 where blood was drawn for the standard panel and CEA test. Doc told me the results of the CT scan which I had already known for weeks. We were talking about what the plan is going to be going forward...if I was going to be cut loose by him at 5 years. He said he wanted to keep me under monitoring for an additional year just to be sure. We part ways expecting things would be fine.

Fast forward almost 2 weeks. I get a text message on Sunday, 7/10, from my oncologist saying he was finally able to review my lab work and said my CEA was elevated at 9.7. But not to worry as he has seen this before and since the scan was clear it could be just something benign causing it. Suggested I go back in on Thursday to get another CEA test done. I said screw this. I went in the next day and got my blood drawn. I got the CEA retest results the next day. 11. My heart sinks. Chatting with the PA who gave me the results, I asked her if a polyp would cause a CEA elevation like this. She said no. I go home freaked out with an MRI scheduled for that Saturday. They're thinking there may be something going on with the 2 3CM liver lesions which showed no PET activity when I was first diagnosed and were biopsied during my initial surgery to remove my colon tumor. I communicate with my oncologist via text messaging and he decides to change the order to have a PET done. My insurance was pretty quick in granting approval and I was able to get scheduled quickly for 7/13. As I've done with other scans, I got the scan images on CD before leaving and was able to get the radiology report that afternoon. I had looked through the scan images and saw a site of hypermetabolic activity on the right lower quandrant of my abdomen. Report states no metastasis or disease recurrence found. I'm still baffled by this. I chat some more with my oncologist later. I was dealing with a bout of diarrhea for a couple of weeks. He said that could possibly cause the CEA increase but as of right now they don't have anything to go on so they can't treat anything. The only thing he could recommend is to retest my CEA in a month to see where it is.

Since I was due for a colonoscopy this year, I went ahead and scheduled one. I figured lets look inside to see if there is anything that can be seen to cause the CEA increase. Colonoscopy was scheduled for 7/20. I go through the procedure fully awake with no sedation. GI doc talks through what he's doing and looking for. We see the anastomosis site and he says everything looks normal. We get to the right side/end of my colon. He's cleaning off the area with water to get a better look when something pops up. He says that's not normal. Goes in closer. Says there's a polyp in the opening to my appendix. Said it's very rare to see something like this. He surmises it's just a polyp by what he can see and takes a couple of samples for examination. But he tells me, I have to have surgery to remove the appendix whether the polyp is cancerous or not. GI doc talks to my CRC surgeon about getting me in as soon as possible to get this taken care of. Consult appointment scheduled for 7/26. GI doc calls me the next day on 7/21 and tells me he got a rush put on the pathology and was able to get a verbal report from the pathologist. High grade dysplasia. He said not great news but not bad news either. He said hopefully the rest of the polyp is still that way when it's taken out.

While all of this was going on, I was able to establish a contact at NIH/NCI. I forwarded all the information I had: pathology report, CT and PET scan images. They had also sent a request for the pathology slides from my original tumor for them to examine personally. I get word back the CT scans do show no evidence of recurrence. Reviewing the PET scan they think there might be some small focal activity where I noticed on the images. But they agree with the plan of having surgery to remove my appendix in hopes this resolves my CEA issue.

Arrive for my consult with the surgeon on 7/26. He tells me he already has me scheduled for a cecectomy on 8/2. But I tell him about my elevated CEA level and what I think may be a hypermetabolic spot on the PET scan that seems to line up with the appendix. He tone changes immediately and says well if the PET did pick something up, this changes how he wants to proceed. He said he would want to do laparoscopic surgery on me on 7/29 and he would want to get decent margins to ensure he gets everything. He takes the copies of the CT and PET images I made for him for his own team to review. I go through the exercise of getting medically cleared for surgery and talk to the surgeon on 7/28. He said he was able to get my case reviewed by the tumor board and they all agree to have the more drastic surgery to get the margins. I asked about the PET scan and he said they traced it down to the right ureter and think it could be a collection of tracer filtered out by my kidney. I also had requested an appointment with another oncologist in the practice I go to as my oncologist is away on vacation. Had this appointment on 7/28. I walk out of that consult more scared than going in. I wanted to get assurance the more drastic procedure was right but ended up worrying about if there was something more going on. She reiterated polyps don't elevate CEA and even though the scans I've had done show nothing on them, there could be something in there. Won't know until the surgeon has a look inside. So now I'm freaked about having possible peritoneal mets.

Surgery day 7/29. I go under the knife a little after 2PM. I get out of the OR around 4:30. In recovery for 2 hours and am finally in my room at around 7. First night was extremely uncomfortable. Surgeon sees me in recovery and said everything went well. He didn't see anything going on inside but he did note the polyp felt firm and that reinforces his decision to have this surgery instead of the cecectomy. I go through Saturday 7/30 still uncomfortable. I learned to ask for anti-nausea meds early and often to stay ahead of the opiate pain killer they had me on from the first surgery and having gone through chemo. By night time I really wanted to pass gas but couldn't. Felt bloated but eventually I tooted twice. Surgeon visited that morning and said if things go well, he'll discharge me on Sunday 7/31. Sunday comes and I'm having bowl movements but they're not pretty. I won't get into those details. Surgeon shows up and discharges me. I'm out of the hospital around 1:45PM.

Today 8/3, I finally get the call from the surgeon with the pathology report. He said all clear. Nothing found in my lymph nodes and the polyp was only precancerous.

If you made it this far in reading, I congratulate you. I wanted to put as much information out there from my experience as to hopefully help others that may be faced with a similar situation. My take away from this is even though scans showed nothing abnormal, the CEA was the trigger to keep pushing. And the colonoscopy was the final piece in figuring out what was probably causing the CEA spike. I feel very fortunate to have discovered this polyp early enough before it went full bore cancer. My GI doc told me he has a friend who was just recently diagnosed with appendicial cancer. His friend was presenting symptoms of having appendicitis but they found out it was a tumor causing the issues. After the surgery, pathology came back with him being Stage 3 due to a lymph node being involved. My GI doc said we were lucky to have found it as the polyp was hidden for most of the time he was scoping me. My colon just happened to shift a certain way and he had the scope pointed in the right direction to see the polyp pop out of the appendicial opening. CEA was good indicator for me as it was 13.9 when I was first diagnosed before surgery. It appears CEA continues to be a good marker for me. I do have some decisions to make regarding some of my medical team and what to do going forward. My GI doc said I'm on yearly colonoscopies now. He also wants to do an endo to make sure everything is good throughout my GI tract. Now I will readily admit I'm not a radiologist. But I got turned off a number of times when some doctors barked at me when I said I looked at the scan images myself whether I was a radiologist. The recent oncologist I consulted said she's not a radiologist and can't read scans. My previous oncologist would sit down with me at every follow up and go through the scan images with me. He would point out what he's looking at and what he's looking for. That's how I got some knowledge about certain triggers which would bring up concern. Of course I did my due diligence and consulted other doctors for their opinions. But I had assumed my new oncologists would review the scan images themselves and not to blindly accept the radiologist's report.

Anyways, I hope this helps someone.

[rp1954]

An interesting piece on possible occult sources of CEA and your earlier experience with CEA levels.

Looking back, to answer a question you once asked about CEA disappearance (kinetics), curative source(s) removal of CEA usually shows a CEA serum half life of several days. So the post-op question becomes what is the CEA blood level after a week.

[zx10guy]

Yes, it will be interesting to see what the CEA level is post op. Not sure when this will be ordered. I can tell my insides are probably still pretty inflamed. Moving around some times feels like I'm about to pop something.

If removal of this polyp doesn't resolve the CEA issue, I really don't know what else to do at this point. At the very least, I saw a pretty significant drop in CEA before going in for surgery.

Regardless, if we hadn't found this polyp, I'd be dealing with bigger issues later. I shudder to think about having to go through yet another primary and how advanced it could be before being noticed.

[Delinda2]

I am so thrilled at the way this turned out for you! For those who don't know much about him, I can share that we became friends several months ago & text or call frequently. He was a rock for me when I went thru my recent ordeal & my kidneys shut down. He is a wonderful person & puts up with me "mothering" him. It's so great to have a friend who knows what you feel. This couldn't have happened to a better guy. He & his wife are talking about coming to Washington state to visit us when we are both feeling better. Can't wait to actually meet face to face! Sending lots of love and wishes for speedy healing. You're the best my friend. XXOXO, Delinda

[zx10guy]

I am so thrilled at the way this turned out for you! For those who don't know much about him, I can share that we became friends several months ago & text or call frequently. He was a rock for me when I went thru my recent ordeal & my kidneys shut down. He is a wonderful person & puts up with me "mothering" him. It's so great to have a friend who knows what you feel. This couldn't have happened to a better guy. He & his wife are talking about coming to Washington state to visit us when we are both feeling better. Can't wait to actually meet face to face! Sending lots of love and wishes for speedy healing. You're the best my friend. XXOXO, Delinda

Delinda,

I'm so glad we have become friends. You were my rock in dealing with what I was thinking could have been a new primary. I can't ever express the gratitude I have for you being there for me. I look forward to getting things situated so we can fly out to visit you.

[Coloncancerqueen]

I feel like your whole story about the clear scans and elevated cea it totally me this summer. I am still in the hunt for the cancer. On the pet I had 7-15 a spot did light up but radiologists also thought is was a ureter or possibly an ovary. I have recently sought out a second opinion. Today I am waiting for biopsy results on that "spot." My second opinion went after it. Results should be in to tomorrow. Scared.

My cea is 12.1. In March is was 1.7

[dianetavegia]

Polyps are just ONE Of the causes for elevated CEA readings.

Glad you had the surgery and hope everything goes back to normal!

[zx10guy]

Thanks Diane.

So I thought I would provide an update and probably the final one on this unless something new crops up in the future. Here's the main point most people will probably be interested in. So I get a call from my GI doc on a Sunday. I should learn not to talk to any of my doctors on a Sunday. He mentioned I probably already know the results from the pathology report. I said I did. He was talking kind of weird so I asked him why he's talking to me that way. He said he thought I had received the results from the pathology report. He said I actually did have some cancer in the polyp It was on just the surface and considered in situ. It doesn't change my treatment plan or my current situation. I re-read the pathology report and it did have one line in there about the in situ condition. But I'm officially per the report stage 0. Not sure why my surgeon said I was precancerous on the phone call a few days after surgery or why he changed his discussion to me being in situ when I had my follow up with him a couple of weeks ago.

I met with my oncologist last Monday where he ran a CEA on me. I mentioned that maybe my CEA would drop due to the in situ polyp being removed. He said typically even in situ polyps won't cause CEA rise. I'm a bit floored by what he said. Anyways, I got the CEA results back and it's down to 5.4. So as a recap, last December it was at 5.6 and prior to that 4.7. At my 6 month checkup it rose to 9.7 and a follow up was done where it spiked to 11. Just before surgery, another CEA was done and it dropped back down to 9.7. And now it's 5.4. Looks like I'm on a 3 month surveillance schedule for the next two visits. Then back to 6 months after that.

My recovery this time around has been more challenging than the first time I had surgery to remove the tumor with my initial diagnosis. I'm coming up on 2 months out from surgery and I'm still having challenges with pain at the main incision site along with some oozing/discharge. I also had a post op infection which caused me to feel like I just came out of surgery. I had to get on 2 oral antibiotics and an antibiotic cream to knock it down.

So I guess we'll see how things go from here. Not sure if the in situ situation means I officially had appendicial cancer or not. I'll have to ask my GI doctor when I see him as he wants to do an endo on me to make sure everything is fine in the other direction.

[dianetavegia]

ZX10Guy, You don't give your age but someone posted a thread that showed in Europe, Roche Labs/ Labcorp now show 5 as the high normal for non smokers over 40! I wrote Roche and asked when that would be changed for the U.S. and got a reply that the U.S. has to get things approved before changing things like values and it takes a lot longer than elsewhere. They didn't mention the test, tho.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=54299&p=441671&hilit=CEA+Roche+levels+Europe#p441671

[zx10guy]

Hi Diane,

I did see your other posts mentioning the newer high normal for non smokers over 40. Yes. I am over 40 but not 50 yet. I'm not too worried about the high CEA number compared to others who are NED. For some reason, I've always had a slightly higher than normal CEA where my numbers were just slightly over the upper limit of normal for non smokers. The only time I've actually dropped within the normal range was about 2 years ago when the hospital where I had my labs done with my former oncologist changed their testing methodology. I guess to the Roche test as their high normal was I think 5 and I had a 4.7.

With my recent CEA at 5.4 is good considering I had a high of 11 just over 2 months ago. My current oncologist said he has a patient who for some reason had their CEA jump up into the teens and has slowly dropped but still remains in the teens. He did all sorts of scans but couldn't find anything. I think they've been hunting for something for about a year and decided there's probably nothing going on but will still monitor the situation.

At this point, I don't know if the clock starts over for me. I guess it probably does.