Another CEA thread...

[JBL]

Good Evening, thanks for reading and any opinions/help is greatly appreciated.

My wife was diagnosed 3/16 (at age 42) with Stage IV CC, met in liver. 4/16, Resected both, right semi-colectomy, liver resection. Colon margins good. One margin on liver portion removed was positive, not realized until she was closed up and headed for recovery. Colon surgeon said he wasn't happy with the level of peritoneal involvement which as I learned later isn't terrific news either. 6/16 started FOL-FOX, made it through 11 out of 12 rounds before tapping out, so chemo ended in 11/16. Oxaliplatin was eliminated after round 10 due to neuropathy, which still has some lingering effects in extremities today. Scans have always been clear since surgery. Now to the CEA stuff...

Level at diagnosis was 25.8. Level dropped to 1.2 after surgery, then went up to 2 as chemo started, then dropped to 1.7 during chemo and started trending back up at end of chemo and continued up since then. It's at 2.9 now. No respiratory or digestive issues (things that can raise CEA I believe). Dr had initially said scans and CEA every 3 months for 2 years following surgery, but things had been looking up so he went to every 6 months which she was happy with, i was kind of on the fence. She gets super anxious and it really effects her day to day life so I didn't push her into more testing. I now think it may be time for a more aggressive approach. Her last scans, chest and abdomen CT, and CEA level check were last week and our follow up with Dr is tomorrow. The radiologist reports are very good, NED. The CEA up to 2.9 is what has me a bit spooked. We are going to MGH in Boston and couldn't be happier with the care, and I'm just trying to prepare myself for the appointment tomorrow and prepping for conversations with Dr and possibly having a difference of opinion. My wife tends to let me be her advocate which is ok and I have her ready for a more spirited appointment tomorrow and perhaps hearing me and the Dr not agree 100%.

I'm of the mind that at a minimum she should have her CEA watched monthly, and possibly have a PET scan since I've read sometimes they can pick up things traditional scans can miss. Am I wrong? I also have read that they also are more likely to give false positives, but in my mind, biopsy of a few false positives is worth it if you also find a recurrence.

I just read that CEA has a half-life of 3-13 days, meaning to me that if you have a slow increasing trend over a year+, something is putting it there. I know it can bounce up and down, but the fact that her baseline after surgery was 1.2, never less than 1, and has slowly headed in the wrong direction, has me wanting to do as much as possible to make sure any other trouble makers in there are removed. We have 2 girls, 9&12, and failure is not an option.

Again, thanks for reading and any comments, opinions, thoughts are greatly appreciated. I was the one reading all the stats and learning up on this stuff, please feel free to be as open and honest as you would like.

Thanks
Jesse

[Shana]

Hi Jesse,

My CEA level at diagnosis was very very high, like 2900 January 2017. I haven't seen anything close to that on here. My most recent test on July 10th showed a CEA of around 1600 which is still very high but lower than where I started. I was in and out of the hospital so much before having surgery in June that they never checked the levels between January and July, no clue how it's been trending. I actually feel very well so I was surprised at the high number, could be just the way my body works? My oncologist is asking me to get it tested on the 10th of each month now to see how the new chemo regimen is working for me.

I am curious if anyone knows how high CEA levels can go.I was told that it's the trend that matters so I hope to be down to single digits eventually! I still have the tumor in my colon and two in my liver, they are smaller but need to shrink more before possible removal and resection.

Best wishes to your wife as she battles this, it's great that you advocate for her!

Shana

[lpas]

Hi Jesse,

Welcome to ColonTalk! You've definitely come to the right place for information. This board and its archives are a terrific resource.

Am I correctly understanding that your wife's doctor found peritoneal mets at the time of her initial surgery? If so, did they remove what they saw or just let it be and hope the chemo would resolve? Just trying to make sure I fully understand your situation.

The fact that her CEA has been trending up since chemo would concern me as well--particularly if they did indeed find peritoneal mets during surgery. The positive liver margins would also be a concern. Your doctor is probably going to tell you not to worry so long as her numbers remain in the normal range, but I'd want closer monitoring at a minimum. I fully understand your wife's anxiety but catching recurrences early can sometimes mean the difference between a resectable met and an unresectable one. Regarding the PET scan, as I understand it, they tend not to be useful for mets of under 1cm in size. With your wife's low CEA, it would probably be much too early to see anything (if there's even anything there to see).

Has your wife ever had a consult at MSK? If I were you, I'd strongly consider it. Definitely be sure that you talk to them if she ever has any kind of liver recurrence. Dr. Kemeny @ MSK has had some incredible results with her HAI pump. You may also want to do some advance research on HIPEC options in the event that the peritoneal issues resurface. You can do a search here for lots of info on both HAI and HIPEC. Look in particular at SkiFletch's posts for some HIPEC inspiration.

With all of that said, the increase may very well be nothing. If you take a look at my signature, you'll see that my CEA has jumped around too. I went from 1.3 to 2.1 at one point last year with no clear explanation. It then proceeded to go slowly back down again. It's crazy-making.

Best of luck from one parent to another. I know how hard it is to deal with these issues when you have young children at home. I hope you'll keep us posted.

[JBL]

Thank you very much for the responses.

Shana, I think I remember seeing a 6k number from someone here a while back, it's not common, but it does occasionally happen I think, thanks again for the kind words and I'll keep a good thought for you as well, I hope those numbers continue to drop.

Ipas, thanks a bunch for the response, so much to digest, just what I was hoping for. Sorry for not being more clear, there were no peritoneal mets. Just the phrase from the Dr, "I wasn't happy to see the level of peritoneal involvement" which I took to mean that the tumor was against it and starting to grow through/spread into it from the colon. I wish I was thinking more clearly at the time and had some better follow up questions. He told me that while she was being worked on by the liver onc. Most of the reading I've found indicate poorer outcomes with peritoneal involvement/mets. I'll find the post surgical report and post the comments here, I Googled whatever I didn't understand and felt I got a pretty good grasp of it but I'm sure you guys here can offer more insight. The surgical report was an internal copy printed by the colon surgeon and handed to us. I think he was good and pissed that the liver had a positive margin. We never would've seen that report otherwise, it's not something that pops up in her patient portal account. I think he wanted to make sure we knew what happened on the table if something popped up down the road. You're comments about the Docs at MSK are very encouraging and if things start to get worse or anything is found, I'll be looking into that for sure.

Thanks again for the kind words. Can't imagine how you did it with even younger kids at home. Great work and thanks for sharing what you've learned.
Jesse

[CRguy]

..... and any comments, opinions, thoughts are greatly appreciated. I was the one reading all the stats and learning up on this stuff, please feel free to be as open and honest as you would like.
Thanks
Jesse

exec summary .....
CEA = not a good marker for many (= me ), can have many false +++ due to ANY inflammation in the body and especially in the chest.

Get secondary markers checked ( I have CA19-9 + CEA )

ALWAYS confirm EXACTLY what the Docs are saying .... ALWAYS
( i.e. "I wasn't happy to see the level of peritoneal involvement" .... don't mean shit ! )
PRESS them on exact explanations until YOU are satisfied you understand what they are talking about.

If the liver had positive margins= you are still in the game and need to up the ante

KEEP pushing
DON'T take no for an answer
Advocate and educate ... yourselves ... AND the docs

WORD !

CRguy

[mpbser]

Hi Jesse,

Welcome!

My husband chose Mass General (MGH) over Dana Farber and MSK for various reasons. Most importantly, we absolutely love Dr. Zhu and feel that Dr. Qudan and Dr. Cusack are eminently qualified.

re : Most of the reading I've found indicate poorer outcomes with peritoneal involvement/mets

I have found that as well.

CEA seems like it can be a fickle thing. Monthly monitoring at the levels you indicate - around 2 - doesn't seem warranted to me as I've read that a CEA level of 2 is actually in the "normal" range. Just my 2 cents....

[Lee]

Do you have copies of her pathology report? If not, get a copy. That should provide a lot of information. Also medical records from the surgeon is a good idea. You can request all of these forms if you don't a copy now.

If you are not already doing so, get a binder and keep copies of EVERYTHING. It tends to come in handy especially in situations like right now.

For what it worth, CEA can bounce around some. Her number is pretty low. My CEA number is around 3.5 and I've been NED (No Evidence Detected) since my surgery 13 years ago.

Good luck and welcome aboard. Sorry for the reason you have to be here.

Lee

[Tdubz]

I think I've had one cea test since my cancer journey started and that was right before chemo started. Is it standard practice to get these tests all the time?

[Lee]

I think I've had one cea test since my cancer journey started and that was right before chemo started. Is it standard practice to get these tests all the time?

It would help if you can provide a signature line, I need a little more information from you to get a better answer, butt here goes.

Yes it is standard to get a baseline CEA at diagnoses. Another following surgery, and then after that every 3 months for the first 3 yrs. What they are looking for is an upward tread. Butt for some people, CEA is not a good marker. Some Dr request the CEA, butt never tell the patient, because it can add stress wondering if your number did indeed go up. I should know, I always wanted the number first.

Getting it during chemo can cause the number to jump. It did for me. From 3.5 to 7.5 My surgeon told me know to worry. As cancer cells are dying off (as with chemo) they emit a protein that the CEA picking up. Anyway following chemo, my CEA went down again,

Hope this helps some,

Lee

[Achilles Torn]

Good Evening, thanks for reading and any opinions/help is greatly appreciated.

My wife was diagnosed 3/16 (at age 42) with Stage IV CC, met in liver. 4/16, Resected both, right semi-colectomy, liver resection. Colon margins good. One margin on liver portion removed was positive, not realized until she was closed up and headed for recovery. Colon surgeon said he wasn't happy with the level of peritoneal involvement which as I learned later isn't terrific news either. 6/16 started FOL-FOX, made it through 11 out of 12 rounds before tapping out, so chemo ended in 11/16. Oxaliplatin was eliminated after round 10 due to neuropathy, which still has some lingering effects in extremities today. Scans have always been clear since surgery. Now to the CEA stuff...

Level at diagnosis was 25.8. Level dropped to 1.2 after surgery, then went up to 2 as chemo started, then dropped to 1.7 during chemo and started trending back up at end of chemo and continued up since then. It's at 2.9 now. No respiratory or digestive issues (things that can raise CEA I believe). Dr had initially said scans and CEA every 3 months for 2 years following surgery, but things had been looking up so he went to every 6 months which she was happy with, i was kind of on the fence. She gets super anxious and it really effects her day to day life so I didn't push her into more testing. I now think it may be time for a more aggressive approach. Her last scans, chest and abdomen CT, and CEA level check were last week and our follow up with Dr is tomorrow. The radiologist reports are very good, NED. The CEA up to 2.9 is what has me a bit spooked. We are going to MGH in Boston and couldn't be happier with the care, and I'm just trying to prepare myself for the appointment tomorrow and prepping for conversations with Dr and possibly having a difference of opinion. My wife tends to let me be her advocate which is ok and I have her ready for a more spirited appointment tomorrow and perhaps hearing me and the Dr not agree 100%.

I'm of the mind that at a minimum she should have her CEA watched monthly, and possibly have a PET scan since I've read sometimes they can pick up things traditional scans can miss. Am I wrong? I also have read that they also are more likely to give false positives, but in my mind, biopsy of a few false positives is worth it if you also find a recurrence.

Hi JBL,

I can only weigh in with a humble opinion that you shouldn't be overly concerned based on the CEA numbers you listed for your wife. It remains within the normal range and a move of 1-1.5 is not enough to signal alarm (but I would always monitor closely regardless).

Another thing you may want to consider is the difference between Bayer/Semeins and Roche Cobas testing assays. Roche seems to give readings at least 1.0-1.5 higher than Bayer and their literature has a higher level for the 'norm' so check with the lab which test they are using (a 2.9 is relatively low for Roche Cobas). (There are a few threads on this such as this one topic viewtopic.php?t=10772)

Having only been properly diagnosed Stage IV through PET I am an advocate for them (however I had strong reason to suspect further involvement). More information is never a bad thing but you do need to consider the relatively minor risk from increased radiation exposure with every scan....For reference my CEA is currently 2.8 (off Chemo 6weeks) and my PET last week was clear.

Hope this helps
AT