Question about necessity of CEA labwork

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Aughhhh
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Location: Portland, Oregon

Question about necessity of CEA labwork

Postby Aughhhh » Sat Oct 06, 2018 12:07 pm

Hi,
I am an old timer here,(15 years out) so I am not exactly up to date with follow up treatments for newly diagnosed patients of CRC. My father who is 87 was just diagnosed with colon cancer. He had 2 tumors, one at the hepatic loop and one in the transverse colon. No lymph node involvement. The surgeon said his liver looked okay. Here's the thing. No abdominal CT, No CEA was done. He went to his primary care doctor after he got out of the hospital and was told they don't use CEA's much anymore. I was shocked by that. Is that true. He hasn't gone to the oncologist yet but the surgeon and primary care doctor are already telling him he will need chemo. He's 87 years old...and Stage 2 from what info I've been given. Is this the new norm? I had chemo for Stage 2 but I was 43 years old....and they STILL follow my CEA every year. I would appreciate any input. Thank you!
Stage IIA (T-3,N-0,M-0), sigmoid colon cancer, Diagnosed age 43 on 8/19/03, sigmoid colectomy on 8/30/03, finished 22 rounds of 5-FU & Leukovorin on 6/8/2004. Currently NED!

Beckster
Posts: 288
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Question about necessity of CEA labwork

Postby Beckster » Sat Oct 06, 2018 12:26 pm

I am a Stage IIA, received chemo and had multiple CEA testing. CEA was done before surgery, before starting chemo and now during surveillance (every 3 months for 3 years and every 6 months for years 4 and 5). In addition, before surgery, I had extensive bloodwork, CT scan and Chest XRay. So, no....I have no idea what they are talking about. The only thing that I can think of is his age.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

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Aughhhh
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Joined: Sat Oct 27, 2007 12:35 pm
Location: Portland, Oregon

Re: Question about necessity of CEA labwork

Postby Aughhhh » Sat Oct 06, 2018 12:33 pm

Thank you, that is what I thought. I questioned the surgeon and he became angry. I won't even go into his inappropriate behavior, because in the end, it's a very small town my dad lives in, and my dad told me he likes the guy. But, this case has been really mismanaged. I'm glad I had the correct info. Thank you very much.
Stage IIA (T-3,N-0,M-0), sigmoid colon cancer, Diagnosed age 43 on 8/19/03, sigmoid colectomy on 8/30/03, finished 22 rounds of 5-FU & Leukovorin on 6/8/2004. Currently NED!

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ANDRETEXAS
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Location: Austin, Texas (University of Tennessee alumnus)

Re: Question about necessity of CEA labwork

Postby ANDRETEXAS » Sat Oct 06, 2018 1:38 pm

I have blood work done every three months....every six weeks until two years ago....and while CEA is not a particularly good marker for me.....my oncologist runs it nonetheless. Why not do the CEA since your giving blood anyway?
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

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Aughhhh
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Joined: Sat Oct 27, 2007 12:35 pm
Location: Portland, Oregon

Re: Question about necessity of CEA labwork

Postby Aughhhh » Sat Oct 06, 2018 2:26 pm

Exactly, That is what I thought too. But I am thinking that these doctors do not like being told what to do, not even suggestions. Either that or they don't know what a CEA is and so they told him they don't use it anymore. I told my dad that wasn't true and he should have it drawn but I don't know if it will happen. Thanks for your input!
Stage IIA (T-3,N-0,M-0), sigmoid colon cancer, Diagnosed age 43 on 8/19/03, sigmoid colectomy on 8/30/03, finished 22 rounds of 5-FU & Leukovorin on 6/8/2004. Currently NED!

rp1954
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Re: Question about necessity of CEA labwork

Postby rp1954 » Sat Oct 06, 2018 3:15 pm

Stage 2 CC, 87 and needs chemo but not a CEA ?!? He needs more informed, more broad minded drs. To a degree this may express some kind of cost contained medicine, perceived age futility on more surgery, or personal dr preference, but I would view it as wholly inadequate. To me, bad attitude means fire and forget whenever convenient, sooner than later.

Especially at his age, for engaged patients/caregivers, he needs all the info he can to improve outcomes and reduce chemo damage. Chemo is extra hard on most old folks. In one case here, White swan went completely alternative chemistry with her aged mom after several chemo experiences. Post-op, cimetidine's potential benefit is tied to CA199 serum readings and/or tissue type. When cimetidine really works, on the marker target, it may stop common forms of metastases and help chew some mets up but it is not really a stand alone drug. Ditto PSK performance has been correlated to CEA.

In our case, we were able to find a nicer 5FU, used in other countries especially for geriatrics, still increase even that 5FU's content 33%, increase leucovorin even more, add some enhancements, and yet reduce chemo damage by some simple dietary changes that no oncologist has ever mentioned.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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ANDRETEXAS
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Location: Austin, Texas (University of Tennessee alumnus)

Re: Question about necessity of CEA labwork

Postby ANDRETEXAS » Sat Oct 06, 2018 4:35 pm

I've never had to do it before.....but if one of my doctors refused my request for a CEA, PSA. A1c, etc., I would immediately go to my primary care physician, and he would run it for me, no doubt.
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Question about necessity of CEA labwork

Postby betsydoglover » Sat Oct 06, 2018 4:59 pm

CEA is a cheap test - your doc/onc should be doing regular CBC/CMP, so no problem doing CEA also with the same sample. It's just another data point. Stage 4 and my first and all but one CEA has been less than 0.5 - once it was 0.9 - clearly it is not a good marker for me - and yet we test it every 3 months, because you never know.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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CRguy
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Re: Question about necessity of CEA labwork

Postby CRguy » Sat Oct 06, 2018 6:25 pm

Aughhhh wrote: I would appreciate any input. Thank you!

I think you may be running into a few issues here.

1. "this is not the way we do things here"
2. "I am the doctor and this is how I do things."
3. Onco has not weighed in yet
4. Geriatric patients often get "triaged" differently than younger patients ... for better or worse.
5. CEA is NOT a marker for everyone
6. some Docs wanna do it anyway, others not so much

IME ....
CEA is not a marker, yet my Oncs wanted it done every 3 then every 6 months thru primary care and met recurrence follow up.
I pushed for CA19-9 as additional monitoring and obviously, had multiple CTs, blood panels, U/Sounds and xrays

I am still getting all these done on a less frequent basis with my own GP, since being released from primary Onc's care.
I have a baseline so it makes sense AND I have a Doc who talks WITH me ...not AT me.
To me this may be your own issue with your Dad's Docs.

All you can do is keep supporting him in his wishes BUTT make sure he is armed with all the right info.
IF the docs seem to be THE issue, then there is always consideration for finding new Docs.

JMO. BTDT with myself and my own father.

Cheers and Harmony sista'
CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

zephyr
Posts: 141
Joined: Thu Aug 18, 2016 7:31 am

Re: Question about necessity of CEA labwork

Postby zephyr » Sat Oct 06, 2018 9:05 pm

My gastroenterologist ordered a CEA after the colonoscopy but before the surgery, to establish a baseline, I guess. Then my oncologist ordered one after surgery. It’s not a good marker for me and I’m Stage IV so the rest of the story is probably irrelevant for your situation.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed

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Aughhhh
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Location: Portland, Oregon

Re: Question about necessity of CEA labwork

Postby Aughhhh » Sat Oct 06, 2018 10:58 pm

CR Guy, I agree with all of the issues you listed. The surgeon definitely does things "his" way and that's it. Everyone there thinks he is a god. He was not open to questions or suggestions. I asked about postponing the surgery for a couple of weeks because my dad had had a prior urethral surgery for stints just 7 days before under general anesthesia and still had a catheter in. He had not even gone in for his follow up appointment for that. My dad needed time to rest up before this surgery. The surgeon told me he had to do it now because he was worried it was an aggressive form of cancer. I asked what the biopsy was and it was just adenocarcinoma....period. I asked if it was a subtype ....anything that could make him think that. And he just said it needed to come out. He would not listen to my concerns. After the surgery, he called my mom and I back to the recovery room and came up to me with a bucket and pulled my dad's intestine out of it and shoved it in my face and said "See! I wanted you to see this!" I was stunned, and I felt so sorry for my mom. I never doubted my dad had a tumor, just that he could wait a few weeks. So, the surgeon is not open to any suggestions at all.

I am hoping that the oncology visit on Tuesday goes well. I have gone over different options with my dad on ways things may go and that he has choices. I told him to get all of the information and ask questions and he doesn't have to decide at the visit. So, I hope it will be informative and this doctor is not a jerk.
Stage IIA (T-3,N-0,M-0), sigmoid colon cancer, Diagnosed age 43 on 8/19/03, sigmoid colectomy on 8/30/03, finished 22 rounds of 5-FU & Leukovorin on 6/8/2004. Currently NED!

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CRguy
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Re: Question about necessity of CEA labwork

Postby CRguy » Sun Oct 07, 2018 12:32 am

Will someone be going with him ?

IME ... older folks ( even older than ME :shock: ) will often just assume that doctors are Gods,
and sadly some Docs believe they are, so they speak and patients are just expected to "obey"

= NOT ME, and I was able to advocate, and at times, intervene for my father.

Sadly, I understand that my situation is not the norm
( Stage IVa survivor with >30 years hands-on medical experience as a Vet )

BUTT if you have prepped him or could attend,
then you have done what you are able to do .... the rest is up to your Dad

PM me if you wanna chat further

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

KimT
Posts: 614
Joined: Sat Feb 20, 2010 8:53 pm

Re: Question about necessity of CEA labwork

Postby KimT » Sun Oct 07, 2018 6:46 am

I don’t put a lot of stock in cea. I haven’t had one drawn in at least 5 years. My cea has never been elevated, even when I had a 10cm tumor. It seems pointless to me to do them as it has never been an indicator of cancer for me.

That said, your fathers surgeon is a jackass. Sorry you have to deal with him.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

DarknessEmbraced
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Question about necessity of CEA labwork

Postby DarknessEmbraced » Sun Oct 07, 2018 7:27 am

I'm sorry your father is being treated that way! I was stage 2a in 2014. I have had yearly ct scans, and CEA and CA 125(another tumor marker) tested every 3 months. Your father will find out more information when he meets with the oncologist. I hope everything goes well for him!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

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Aughhhh
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Location: Portland, Oregon

Re: Question about necessity of CEA labwork

Postby Aughhhh » Sun Oct 07, 2018 10:25 am

Thank you everyone. Your experience and knowledge is greatly appreciated. My mom will be going with him. They are both 87 but sharp...not used to talking back to doctors but I've told him to ask, ask, and ask more questions. I cannot be there with him but will send him a list of questions. We will see how this goes. Thank you again - you have all been so helpful!
Stage IIA (T-3,N-0,M-0), sigmoid colon cancer, Diagnosed age 43 on 8/19/03, sigmoid colectomy on 8/30/03, finished 22 rounds of 5-FU & Leukovorin on 6/8/2004. Currently NED!


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