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Rising CEA and clear scans.

zx10guy
Posts: 274
Joined: Dec 2013
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.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Really good job and I am glad to read that it all is okay for you now.  My last appointment my oncologist told me he went through all of my scans since I first started to double check everything.  Seeing him tomorrow.  I am now on a 6 month scan schedule (next one 3 months) and 3 month bloodwork.

Interesting about possibly being "cut loose" after 5 years.  I am just assuming always getting colonscopy every year, bloodwork a couple of times a year.  Guess the beast will always be in my mind when I get to 5 years.  (At 18 months post surgery now myself)

beaumontdave's picture
beaumontdave
Posts: 1170
Joined: Aug 2013

Scary stuff, I'm glad you rode herd and kept the medicos on top of things. I'm also glad they yanked my appendix at the colectomy, it would suck to be taken down by an extraneous appendage. Congrats.................................Dave

sreekanth
Posts: 61
Joined: Apr 2017

Wow, great info zx10guy. I am in a similar situation. 
CEA has never been high- but came back with 15.6 and five days later with 17.3!!
Scans done on same day could not find anything abnormal.
I have a colonoscopy on August 2nd.

 

This kind of detailed post helps people inthe same boat like me. I am really grateful.

Good to learn that pre-cancerous polyps can cause CEA elevation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4483931/
Did you have chemo after this?

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Any CEA tests since the 17.3?

sreekanth
Posts: 61
Joined: Apr 2017

No. waiting for colonoscopy on 8/2/21-thanks for checking on me :-)

sreekanth
Posts: 61
Joined: Apr 2017

MY colonoscopy came clean today. Good news but not entirely unexpected. I have heard CEA usually elevates with Liver mets. Hope it is not a met :-) but it is a lot to hope for. I guess the next step will be a PET scan

sreekanth
Posts: 61
Joined: Apr 2017

The PET scan found a hypermetabolic lymph node in the pelvis measuring 1.6cmx1.2 cm (near obturator chain in pelvic region) that was ruled 'recurrence' unless proven otherwise. I am so bummed. Has this kind of met been treated for any of you? If yes, please share details. I have not met with my oncologist yet.

The PET did not find any other lesions or lymph mets

lhduffer
Posts: 89
Joined: Oct 2015

Thank you for sharing this.  I just had my 5 year scan and CEA last week and had a big jump in my CEA (from 4.8 to 19.1 although it had been slowly increasing).  My CT did show an enlarging appendix concerning for mucocele.  I too was going to be released at 5 years and was so hoping for my 5 year NED mark.  Such a deflating feeling as so many of you know.

I go for my PET tomorrow and am scheduled for a colonoscopy in a couple of weeks.  Based on the scan they were not seeing evidence of a recurrence.  They felt it could possibly be a polyp at the appendix or a secondary appendiceal cancer, which is what we will be trying to determine, or eliminate (hoping and praying).

So the anxious time of scans, tests and waiting begin again.  I am, however, also thankful that I was still under survellience.  If this is something new, at least it was hopefully caught early and can be addressed quickly.

sreekanth
Posts: 61
Joined: Apr 2017

wishing the best for you lhduffer. Hang in there

lhduffer
Posts: 89
Joined: Oct 2015

Thank you so much.  Wishing you the best with also.

Trubrit's picture
Trubrit
Posts: 5511
Joined: Jan 2013

I also had a scan that showed an enlarged appendix. They were watching it, when they discovered my Liver tumour. When I went to see the Liver surgeon, I asked if he could just remove the appendix, and he said yes.  Pathology came back clear, but he did say it was defintiely not a normal looking appendix. 

I hope that all is well.  The PET and Colonoscopy, should provide you with more answers. 

Tru

lhduffer
Posts: 89
Joined: Oct 2015

Thank you.  I had the PET on Wednesday and it did show a high SUV of 7.8 for the appendix.  They will perform the colonoscopy on 9/24 and then devise a plan.  Before the PET my surgeon mentioned removal of the appendix so I'm assuming that's where I'm headed.

Trubrit's picture
Trubrit
Posts: 5511
Joined: Jan 2013

I always find the waiting part, hard.  I wish you the best as you wait, and hope the appendix is an easy fix. They remove them now, via key hole surgery, so not as bad as the old days, when they whipped you open. 

Tru

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