Should we be worried ?

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very worried husband
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Joined: Mon Mar 28, 2011 1:20 am

Should we be worried ?

Postby very worried husband » Mon Mar 26, 2012 12:55 pm

My wife just had her 3 months Blood work today. she is stage 3b, january 2011 surgery to remove tumour ( 7/29 Positive). so 14 months out of surgery. she had her yearly colonscopy and CT scan in December 2011, which was clear and she was NED. Her CEA now reads 1.45, I know it's within the normal range, but it has almost doubled since december. Aug 3rd, 2011 reading were after she finished her chemo. This is the table of her testing.

CEA:
3rd Aug,2011 <0.50
13th Dec 2011 0.79
26th March 2012 1.45

should we be worried with the constant Rise in CEA ? less than 0.5, then 0.79 and now 1.45 .
( her CEA at diagnose was 1.79 i think !!)
Thanks,
very worried husband
Last edited by very worried husband on Mon Mar 26, 2012 1:02 pm, edited 1 time in total.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

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Jimswife
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Re: Should we be worried ?

Postby Jimswife » Mon Mar 26, 2012 1:02 pm

Hi can't answer that I'm afraid as we haven't got to all the bloodwork etc yet , still doing chemo , what does the doctor say ? Is he worried ?
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

beth568
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Location: Boston area, MA

Re: Should we be worried ?

Postby beth568 » Mon Mar 26, 2012 1:05 pm

Short answer: no, you shouldn't be worried.

A slight rise like that, well on the low side of normal, isn't cause for concern. The difference is small enough that minor factors could have affected the number. The test results can vary a bit even in the course of a single day. I had a similar pattern - my last CEA was 1.6 after a 0.8 reading before my November scan. My onc dismissed it without batting an eyelash, and said that an upward trend would be cause for concern if the numbers were higher, but at these levels under 2, it was nothing to think about.

I know it's hard not to be concerned, but really, this is OK. Hope that helps a little.
Beth
dx @age 42, Jan '11 RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13
http://www.mysemicolon.net

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BrownBagger
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Location: Central NYS

Re: Should we be worried ?

Postby BrownBagger » Mon Mar 26, 2012 1:06 pm

You know, I don't even look at those numbers anymore. Less anxiety over something about which I have no control. JMO.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Should we be worried ?

Postby very worried husband » Mon Mar 26, 2012 1:08 pm

@ jims wife! The Onc says it's within the normal range, but i am concerned with the constant rise in CEA...
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Should we be worried ?

Postby very worried husband » Mon Mar 26, 2012 1:13 pm

beth568 ,

Thansk. I heard that constant rise is not good. and was not sure about the small increase. Thanks for clearing. The onc was happy that everything is normal and she looks good. I am going to start her on organic food when she arrives in 2 weeks from china.... :D
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Should we be worried ?

Postby very worried husband » Mon Mar 26, 2012 1:15 pm

BrownBagger,

You are so right, but what can one do? we are so helpless against this monster.....
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

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Ashlee H.
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Location: Southern California

Re: Should we be worried ?

Postby Ashlee H. » Mon Mar 26, 2012 1:15 pm

From what you say, the CEA is not a good marker for her. When I was DX mine was 45...and many here have it in the hundreds. I would get tested more often (don't know what schedule the ONC has you on now) and just keep an eye on it. If it continues to double every month, then it would be time for another scan. We have a few here with CEAs above 5 and they are NED. I never let my ONC get away with just telling me my results are "Normal", unless I really don't care about them. I want numbers so I can track it myself. I knew the cancer was back way before my CEA went over the 5 mark.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

hannahw
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Re: Should we be worried ?

Postby hannahw » Mon Mar 26, 2012 1:20 pm

I wouldn't worry until the doc tells you there's something to worry about. Is it possible something is afoot? Anything is possible. But most likely, it's nothing. Cancer takes so much of our control away from us so I think it's really normal to want to be super-vigiliant, to make sure that we're at the ready for any little blip so that we can attack aggressively against any cancer rather than feeling like we're stuck being defensive/reactive. The problem with this is that you can end up spending your life waiting for the other shoe to fall insteading of enjoying your life in the moment. In most cases, whatever the CEA might tell you probably isn't going to change the outcome of whatever treatment follows.

Docs look at CEA for trends over time. Two or three CEA values doesn't establish much of a trend. A lot of docs describe CEA values as "pass/fail." Anything under about 6 is considered a pass. So doubling from under 1 to slightly over 1 is not cause for alarm. The fact that your wife's CEA was so low at diagnosis suggests that CEA is not a good marker for her. It is not, in fact, a good marker for most people. My Dad, for example, has had some raging colon cancer and a CEA that has never been above 2.0, regardless of what's going on. My Dad's onc still draws the CEA from time to time because it change from being no indictator to being a good indicator, but the onc has always told us that CEA is just a small part of a big, complicated picture so you don't want to tie your worries to it. More often than not it's going to cause you unwarranted stress.

I'm not sure every doctor explains this, but CEA is just a protein that all humans generate to some degree, even healthy bodies that are cancer free. The reason it is sometimes used as a marker for colon cancer is because GI tumors are more likely to express abnormal amoutns of CEA, but "more likely" doesn't even mean it's true for the majority of CRC patients. It's actually lass than half of all CRC patients who have CEA markers that are indicative of anything. And even for those people, if the CEA goes up, it tends to go up before the scans show anything and most docs what treat what can't even be seen so the rise in CEA tends to raise the level survellience (like maybe you get a scan more frequently than you would otherwise).

Additionally, it's not a static value so if you draw blood for CEA in the morning and then again in the even, you'll most likely get two different numbers. So a change in your wife's CEA that is as small as the one you're describing could just be the ebb and flow of the body, a reflection of a working system at work.
Daughter of Dad with Stage IV CC

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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Should we be worried ?

Postby dianetavegia » Mon Mar 26, 2012 1:24 pm

My CEA was a steady 3. something for 2 1/2 years after dx and surgery then went to a little over 4. I trusted my onc and never asked for 'numbers'. He told me 'excellent, stable, perfect, great' until it went to 6.4 and a small met was found on my liver.

If you're concerned, I would insist on another CEA in a month or so but be sure to not have it done while sick with a cold, any infection, diverticulitis or inflammation and avoid Biotin (also found in Brewer's Yeast and vitamins for hair and nails). One lab article I read said it can take 5 - 7 days for a CEA to stabilize after the end of an infection.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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BrownBagger
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Re: Should we be worried ?

Postby BrownBagger » Mon Mar 26, 2012 1:27 pm

very worried husband wrote:You are so right, but what can one do? we are so helpless against this monster.....


I wasn't trying to be flip, because I understand how you feel--believe me. However, I've come to understand over time that the time and energy I spend worrying about this disease is basically just wasted. Does me no good; does me some tangible harm. A while back I decided that I have X amount of time left on this planet--just like everybody else. Nobody knows how much. I try to spend my available time enjoying the things that make life worth living; make the most of the time I have left.

What's a number? And what are you going to do about it if it's going the wrong way? Nothing productive, I can assure you of that. Worry about it. Tie yourself into a knot. Freak out.

I take my treatment as seriously as anyone, and I make damn sure I listen to my doctors, understand and follow their advice. But I don't pretend to know more than they do about my case, so I trust them to guide me down the right path. That doesn't include obsessing on every detail. And I consider CEA to be a minor detail.

Just trying to offer some insight into my comment and thought process.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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dianetavegia
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Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Should we be worried ?

Postby dianetavegia » Mon Mar 26, 2012 3:02 pm

I read that NON cancer patients generally have CEA's that we consider 'normal' for us after cancer but read on.....

Most normal persons have detectable concentrations of circulating CEA. Approximately 85% of healthy (non cancer patient) adults have CEA levels less than 2.5 ng/mL, while 95% of healthy (non cancer patient) have levels less than 5.0 ng/mL. CEA levels are slightly higher in men than women. The median level is 3.4 ng/mL in men and 2.5 ug/mL in women. Healthy persons seldom have levels above 10 ng/mL.


Elevated levels are also frequently seen in other gastrointestinal diseases including peptic ulcer, pancreatitis, diverticulitis, and inflammatory bowel disease. Benign diseases rarely produce CEA serum levels >10ng/mL


Bowel obstruction results in higher CEA concentrations in patients with colorectal cancer. Decompression alone reduces serum CEA level.
This makes me wonder if chronic constipation can cause a slightly elevated CEA.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

TimT
Posts: 70
Joined: Mon Jan 16, 2012 2:58 pm
Location: new orleans, LA

Re: Should we be worried ?

Postby TimT » Mon Mar 26, 2012 3:17 pm

those are great cea numbers. i only hope mine are that good going forward. mine have bounced around up and down between 1.3 to 3.9 in the last 14 months. my (2) oncs told me these numbers at these low levels don't tell very much and not to worry. timt
CRC: dx T3N0M0 1/11
chemoradiation 6 wks - 2/11
surgery LAR 5/11 - T2N0M0
4 mos xel 7/11
reverasal 12/11

wifenurse
Posts: 164
Joined: Tue Feb 01, 2011 4:05 pm

Re: Should we be worried ?

Postby wifenurse » Mon Mar 26, 2012 3:37 pm

My husband's numbers trended almost the same way in the first 9 months after treatment ended - <0.5 at 3 months after chemo, then up to 1.0 at his 6 month check (had been 0.9 at original diagnosis), then up to 1.4 at the 9 month check-up. I was in major panic mode, but am happy to share that his CEA trended back down again at the 1 year mark and has been stable for the past year in the 1.0 range. Many things can affect these tests, for my husband we speculate that it was an attack of gout. Hope that our story will encourage you! We went through alot of anxiety over these numbers that in hindsight we didn't need to fret about. I think it is important to know your numbers and make sure that you are comfortable with your follow-up plan.
Christy
Wife of Jayson, diagnosed Oct 2009 CRC - age 39
Radiation & Chemotherapy Nov-Dec 2009
Colon & Liver resection Feb 2010 - Stage IV
Folfox + Avastin X 12 treatments - finished Aug 2010
NED 10/10, 1/11, 7/11, & 12/11

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lohidoc
Posts: 454
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Re: Should we be worried ?

Postby lohidoc » Mon Mar 26, 2012 3:43 pm

One way to determine if CEA is a good marker in an individual case is to ask for an immunochemistry stain on your original tumour (the path department usually keeps those samples). My CEA has always been normal, even at diagnosis, even though my tumour stained strongly positive. My onc thinks it is a good sign.
"Half of what I know is wrong. I don't know which half."

Age 56
Dx 19/7/11
R. hemicolectomy 25/7/11
IIIc, 7 / 23 nodes,
no mets
Folfox 21/8/11
CT Scan 6/3/12 NED
CT Scan 21/6/12 30+ lung mets, 2 retroperitoneal tumours
marcdu4.wordpress.com


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