Some CEA studies I found interesting

[hwr]

Takeaways:

CEA can fluctuate considerably in healty individuals

Having periodic CEA tests and CT scans as part of surveillance does not provide an advantage over just periodic CT only

https://www.koreamed.org/SearchBasic.php?RID=0192LMO/2019.9.3.146&DT=1

https://www.ascopost.com/issues/august-15-2014/high-false-positive-rate-of-elevated-cea-seen-in-patients-with-resected-colorectal-cancer/

https://www.ncbi.nlm.nih.gov/pubmed/24430319

[hwr]

I have quarterly visit with my oncologist on May 19. I am scheduled to have comprehensive metabolic panel, CBC, and CEA. I have those labs 15 minutes before our discussion so I suspose I will have to have them this visit and see if i can talk him out of further CEA tests. He doesnt take to kindly to my bringing up studies I have found on google searches. It just seems to me the CEA is flaky and if an annual CT is just as good for early detection of recurrence, why go through the anxiety of the dreaded CEA?

[beach sunrise]

Is CEA the only tumor marker they test for you?

[hwr]

I am scheduled to have blood work including CEA every 3 months and CT annually. If a CT can catch a recurrence timely why have the CEA? No doctor would treat based on CEA alone anyway. From what I understand, CEA often produces false positive and causes anxiety while the patient waits for retest and scans and quite often no recurrence is found. There are a number of benign reasons CEA can be elevated. It can detect cancer earlier than the CT but nothing is going to be done until it's found on a scan anyway so why do it? Just give me a scan every year.

[claudine]

How good are CEA markers in your personal case? They seem to be reliable for my husband (increase = recurrence), and because a blood test is cheaper than a scan, he'll get his CEA measured every something (not clear how often yet). That's the rationale (financial + quick/easy test) that his onc gave us for prioritizing CEA over scans.
Also, if scans are done only once a year, I would be concerned about mets developing too much before being caught. At his last test mid-March DH's CEA levels were still above normal (7.6) but the onc wasn't concerned at all; said he'd start looking closer (scans, etc) if they got in the double digits.

[hwr]

https://www.cancer.gov/news-events/cancer-currents-blog/2018/colorectal-cancer-follow-up-testing
I've only had 2 CEA tests. 1st in July, 2019 was 0.9; the 2nd was 1.0 in January, 2020. If it adds value to the surveillance then by all means it should be done, but I'm not convinced it does.

It's not specific to cancer
It fluctuates
No treatment decisions are made based on it alone
Studies show having just a CT every 12-18 months is just as timely and effective.

[stu]

Hi ,

As a child I used to visit my Irish granny just after Christmas . The trip from Scotland on the ferry at that time of year was always stomach churning with memories of high waves and the windows dipping too close to the sea . Embarking I always looked at the safety net , it fascinated me that it could have a role to play for some .
Now when I think of CEA that’s what always springs to mind . I don’t know why .

It has its part to play and over the 11 years of being here it honestly for some people is so reliable it has got them into the scanning unit earlier and potentially saved their life as the tumour is smaller than what it could have been if left to the scan date . This has not been the case for my mum . Hers is tricky as it hardly rises , it spikes during chemo , it is now influenced by something else causing it to spike . However under close analysis even hers has percentage difference and a pattern of change . Although still within the normal limits we know when it arrives at a certain number for her it time to get checked .

So my simplistic analysis is , not so good to access the ferry but for some it’s a very effective safety net . Getting to scans as early as possible has been a life safer . It’s an access point in my mind , limited as it is it still has value .

Even after 11 years my mum still has it taken every 3 months . Scans now once a year .

Take care ,
Stu

[hwr]

You are correct that CEA can detect cancer earlier than CT. And, I suppose if a patient had a CT and it was clear and was due for another in a year but over the next few months CEA showed a trend of increases, the doctor would order scans to see what was going on. It may be nothing; it may be recurrence. Some have CEA's that show increases but nothing on scans and then later CEA returns to baseline levels. These false positives can be very stressful as the patient waits for the next test and undergoes scans. OTOH, if a rising CEA prompted an earlier scan that confirmed recurrence, does it really make a difference knowing this a few months earlier than if it it had been found on an annual CT scan? Some studies say it makes no difference. This is a discussion I will have with my oncologist next week.

[stu]

It can cause considerable anxiety! Even now waiting on the results can cause a bit of surface anxiety. However understanding its role and its limitations has helped put it in a box and not over react to it .
Last winter my mum had a spike for around six months . Two scans and nothing showed up . Then it returned to normal . We now know it has another influence. I have also seen people reporting a spike after having covid so another aspect to look into .
Take care ,
Stu

[zx10guy]

CEA is an absolutely miserable test. And research should go into something more reliable. As has been stated already, for some it works as intended as it provided an early alert that triggered a scan which found something. But when doctors keep saying they don't treat based on CEA alone, there's something seriously wrong.

I've posted numerous times on here about my situation and frankly I'm pretty surprised no one has ever referenced any of my posts. I'm currently the poster child for how CEA has been causing undue stress and possibly harm. When people say they're worried about a few tenths of an increase if there is something going on, I counter with try having your CEA jump by 20+ points at a time. I've been dealing with this extremely elevated CEA for over 3 years now. My doc is totally baffled as to why my CEA is behaving the way it is. I started at a low of 5.4 and the start of this ordeal had my CEA jump to 15.6 from there it bounced around for about 2 years between 11 and 20. Then the past year it jumps to 26 and then 28.6 and then 52. The 52 number was followed up a month later with a retest which finally showed a drop to 44.4. I've had a ton of CT scans since my initial diagnosis in Dec of 2012, 4 PET scans, 2 MRIs, 1 ultrasound, 2 upper GI endoscopies, 1 small bowel capsule endoscopy, and a few colonoscopies. I have had a new primary caught in 2016 which was stage 0. Other than that situation, no new cancers or mets have been found. My CEA roller coaster started a few months after the surgical removal of the new primary in 2016.

I'm due for my next 6 months follow up next month. This time for the first time ever 2012, I'm going into a checkup with no scan order. My doc didn't give me an explanation on what he's thinking but I suspect he feels I've had enough radiation exposure from chasing this CEA craziness. Ironically, he's still going to run a CEA test when I go in next month.

[beach sunrise]

Hi zx10guy, have they tested any other cancer markers besides CEA?

[JJH]

hwr - I have a question: Your signature says that you had appendix cancer, but it doesn't give the details of what kind of cancer it was. What evidence do you have that your tumor was the same type of cancer as found in colon cancer?

Cancer of the appendix differs from colorectal cancer
https://www.oncologynurseadvisor.com/home/headlines/web-exclusives/cancer-of-the-appendix-differs-from-colorectal-cancer-after-all

An appendix tumor may be one of the following types:

• Neuroendocrine tumor. Also known as a carcinoid tumor, this type usually starts in the tip of the appendix and accounts for more than half of appendiceal malignancies.
• Mucinous cystadenoma. This is a benign tumor that starts in the mucoceles, which are mucus-filled areas of edema or sacs in the appendix wall. A mucinous cystadenoma is benign and does not spread to other organs when it is in an intact appendix. It is also known as a low-grade mucinous neoplasm.
• Mucinous cystadenocarcinoma. This type of tumor also starts in the mucoceles, but it is malignant and can spread elsewhere. It accounts for about 20 percent of all cases of appendix cancer.
• Colonic-type adenocarcinoma. About 10 percent of all appendix tumors are adenocarcinomas, and they usually start at the base of the appendix when originating in this organ. They can spread to other organs and areas of the body.
• Goblet cell carcinoma. Also known as an adenoneuroendocrine tumor, this type of tumor has similar characteristics to both a neuroendocrine tumor and an adenocarcinoma. A goblet cell carcinoma may spread to other organs and tends to be more aggressive than a neuroendocrine tumor.
• Signet-ring cell adenocarcinoma. A rare and difficult-to-treat malignant tumor, a signet-ring cell adenocarcinoma is faster growing and more difficult to remove than other adenocarcinomas.
• Paraganglioma. This type of tumor is usually benign. However, medical literature has reported one rare case of a malignant paraganglioma in the appendix.

Ref: https://www.medicalnewstoday.com/articles/323955#types

[hwr]

hwr - I have a question: Your signature says that you had appendix cancer, but it doesn't give the details of what kind of cancer it was. What evidence do you have that your tumor was the same type of cancer as found in colon cancer?

Cancer of the appendix differs from colorectal cancer
https://www.oncologynurseadvisor.com/home/headlines/web-exclusives/cancer-of-the-appendix-differs-from-colorectal-cancer-after-all

An appendix tumor may be one of the following types:

• Neuroendocrine tumor. Also known as a carcinoid tumor, this type usually starts in the tip of the appendix and accounts for more than half of appendiceal malignancies.
• Mucinous cystadenoma. This is a benign tumor that starts in the mucoceles, which are mucus-filled areas of edema or sacs in the appendix wall. A mucinous cystadenoma is benign and does not spread to other organs when it is in an intact appendix. It is also known as a low-grade mucinous neoplasm.
• Mucinous cystadenocarcinoma. This type of tumor also starts in the mucoceles, but it is malignant and can spread elsewhere. It accounts for about 20 percent of all cases of appendix cancer.
• Colonic-type adenocarcinoma. About 10 percent of all appendix tumors are adenocarcinomas, and they usually start at the base of the appendix when originating in this organ. They can spread to other organs and areas of the body.
• Goblet cell carcinoma. Also known as an adenoneuroendocrine tumor, this type of tumor has similar characteristics to both a neuroendocrine tumor and an adenocarcinoma. A goblet cell carcinoma may spread to other organs and tends to be more aggressive than a neuroendocrine tumor.
• Signet-ring cell adenocarcinoma. A rare and difficult-to-treat malignant tumor, a signet-ring cell adenocarcinoma is faster growing and more difficult to remove than other adenocarcinomas.
• Paraganglioma. This type of tumor is usually benign. However, medical literature has reported one rare case of a malignant paraganglioma in the appendix.

Ref: https://www.medicalnewstoday.com/articles/323955#types

Signature updated.

[stu]

Well done on the signature! It took me about eight years and we had a laugh as I eventually gave into peer pressure. However I do think my mum’s signature is a source of encouragement to a lot of people in her situation so it too has value !

We have had a lot of people journey along her with appendix cancer . Very similar protocol and shared common grounds .

Have a good day !

Stu

[stu]

Zx10 guy ,

I honestly think you must be source of some research article . Your CEA journey is a stand alone example . It must have caused you a lot of distress over the years . I actually use your history to calm a few people down over here when CEA is spiking with no evidence of a tumour.
Now we are seeing spiking CEA following covid 19 . With the inflammatory nature of the virus it is one to factor in just now .
Stay safe and I do miss your photos . Especially just now .
Take care ,
Stu