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Does survivorship cause OCD?

shmurciakova's picture
Posts: 910
Joined: Dec 2002

Do any of you feel like you have Obsessive Compulsive Disorder? I just had my scans/bloodwork done 1 year and 8 months NED. I had clear scans but when I asked the results of my CEA I was told it was 0.5/perfect! Well, one year ago I was told my CEA was "less than" 0.5. So I am like "What, it isn't below 0.5???" The nurse then proceeded to tell me that it had not changed from last year. Mind you this was not the nurse that I know and usually talk to. I get tested here in Alaska once/year and down at MD Anderson the other 2X. There in Texas the CEA test only goes down to 1, not below 1 much less below 0.5. At any rate, am I crazy for wondering if my CEA has crept up by 1/10 of a % in a year? I know I should be happy and joyous, but all I have managed to do so far today is worry! Am I crazy?
Anyone else have experiences like this? I know I should be down on my knees thanking God that I am NED not worrying about some kind of silly thing like this. But has this disease turned any of you others into hypochodriacs?
Just want to know if I am the only one,

Posts: 1560
Joined: May 2006


Per my mother's oncologist CEA does not mean anything unless it is very high. Low CEA like yours does not mean whether there are cancer cells in your body or not. It is just a marker that is useful when it reaches high number. Then they know that there is something wrong.

My mother's CEA before her surgery and carcinoma removal from colon and bladder was low just like yours. And she had tumor growing. When they removed it, her CEA did not change. So, you see -it is not indicative of cancer like CT or PET scan is. If those are fine, then you are fine.

So, do not worry.

I pray that you stay NED.

Stay warm too - Alaska in my mind sounds very cold (partly joking!):)


Best Regards, Eleonora

KathiM's picture
Posts: 8077
Joined: Aug 2005

It could make me crazy, but I don't want it to, so it won't....stats and test 'normal' ranges are just that....my wbc stays 1 point 'out of range'... ok, so I just turn my head when someone sneezes... My fav expression:
80% of what we worry about NEVER happens,
the other 20% that does happen, we can do NOTHING about....so....why worry????
(I just LOVE that...hehehehehe)
Hugs, Kathi
p.s.-my CEA during VERY active, stage III rectal cancer was 1.5

Kanort's picture
Posts: 1275
Joined: Jan 2004

No, Susan, I am right there with you. My CEA has gone from 1.3 to 1.7 to 2.0 and at my last test, it was 2.3. Looks like a trend to me. However, my oncologist says that it is in the normal range. I go back to my oncologist on the 11th and have just started fretting over it. It is not something I worry about until testing time. Try and not let it get you down.



scouty's picture
Posts: 1976
Joined: Apr 2004


I don't think being anxious and worried about your testing is anything related close to OCD. I think it is very very normal behavior. That being said, my onc says the degree of error in CEA testing is 2.0........ so try not to worry about that. I also have read that certain foods and other environmental things can impact it.

Lisa P.

CynthiaA's picture
Posts: 20
Joined: Feb 2004

Maybe a little 'Anal Retentive', but definitely not OCD. LOL

Cynthia A

kerry's picture
Posts: 1317
Joined: Jan 2003

Oh Susan,

I too pour over my blood stats and memorize every number and then fret when it is not in the normal range. However, I agree with the others in that the CEA does not necessarily indicate cancer, however a trend should be watched closely.

I fell through the medical cracks prior to being diagnosed and I do not intend to fall through any more cracks, so call me OCD, anal retentive or just plain crazy - I check and recheck everything that is done to me. And then question what I don't understand.

Congratulations on the NED - that is great news


Betsydoglover's picture
Posts: 1256
Joined: Jul 2005

Hi Susan -

I hardly think this qualifies as OCD - just normal, somewhat nerdy, vigilance regarding your health. You know every lab has slightly different reference ranges and you mention using two different facilities. That could be all the explanation needed. I only have CEA reports in hand from my NIH studies in March and April, but on those reports my CEA was reported as

I'd trust those scan results and consider this a normal variation in CEA and not worry about it. By the way, my CEA after colon surgery with known liver metastases was still 0.5 (not

Take care (and celebrate those good scan results)

Posts: 1961
Joined: Aug 2003

Others have already replied on the CEA issue -- and I agree (there is a range of normal, which varies by lab; dramatic increases are a sign that further tests should be pursued...). So mostly I just want to say: no, you are not the only one!!! I try to achieve a balance between being vigilant/responsible, and driving myself crazy. It ain't easy! Hang in there, my NED friend!

spongebob's picture
Posts: 2598
Joined: Apr 2003

Ahoy, Susan -

I agree with my esteemed colleagues re: your OCD concerns and your worry over your numbers. I am aware of one instance where 2 CEAs were drawn on the same patient on the same day and sent to two different labs and the results came back with different values.

Are you a Virgo? If so, that would explain the "anal retentiveness"! Otherwise, I agree with Betsy and the others atht you're just being a good patient and maintaining proper vigilance on a key indicator of your cancer status. You are doing the very thing you SHOULD be doing - Taking responsibility for your healthcare and playing an active role in your treatment and surveillance. Keep it up!

Have a great 4th of July weekend.

- SB

KathiM's picture
Posts: 8077
Joined: Aug 2005

Hey, Dad, you ARE my hero!!!!
I agree with Betsy and others, too...I just call my doc and tell him I'm having another bit of 'canceritis'...but I DO call...vigilance is the key to catching stuff early.
I salute you, dad of mine!
Hugs, Kathi

Posts: 78
Joined: Jan 2005

We have been told repeatedly that one CEA # does not necessarily mean much as it is the direction that it is going. My husband was 4.3 at diagnosis with Stage IIIc. After chemo his CEA was 1.2 and 2 months later it was 2.4 so he was put on a every six weeks check because it had doubled even though still normal. It progressed as:

1.2 July
2.4 Sept.
2.7 Oct.
3.6 Dec. (CT - some changes but nothing concrete)
5.5 Jan. (PET/CT - presacral mass)

We are so thankful that the onc. paid attention to these very small increases, and he was diagnosed and got the pre-sacral mass removed at 1.8 cm.

So far, CEA has not been an alarming # but it has been a tattle-tale for my husband.


Posts: 118
Joined: Mar 2005

Hi Susan,
Just like Mwomack said about her husband, I also had a recurrance quickly detected by the CEA rise. It was 1.49 in Nov., 5.5 in Feb., the next week went up to 9. Got a Petscan that showed a hotspot in the left abdomen. Cat scan done didn't clearly show what was involved. Had surgery and he found it in the left ovary and another in the cul-de-sac between the rectum and vagina. Both cancerous and only 1 cm in size. I don't know if anyone who has had a recurrance felt the same as I did, but I knew something was wrong before I got the test to prove it. Call it a "Gut" feeling (nothing physical, only in my mind) but my husband kept asking me why I was always looking for more information after I was clear for 3 months. I didn't want to think it was happening, but really knew it was. If you have any doubts, follow them up and don't let anyone talk you out of getting checked out. Mine was hopefully caught before it has spread any further. My CEA after surgery was back down to 2.29, 2 weeks later it dropped to 1.99; 2 weeks later it dropped to 1.2. I am back on chemo and it is still dropping (1.12). For some people , their CEA is a good indication of activity. Just watch it closely. Best of Luck!! Kandy

jsabol's picture
Posts: 1156
Joined: Dec 2003

Hi Susan,
Well, I AM a Virgo, and I also worry about CEA numbers, but not enough to remember what they are once I leave the onc's office. She reassures me that we look for trends and if there my level would be >2.0, she would check that I had no influencing factors, then repeat the test and go from there.
My CEA pre-surgery was It is SOOOOO hard not to be anxious about a recurrance, but we all have lives to live. I try to put those worries in a little drawer in my mind, and let it open only around appt amd re-test times!
I can finally make it through my 3 month appt without Ativan and too many tears! Hang in there, and stay strong. Judy

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