Question about necessity of CEA labwork

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dianetavegia
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Re: Question about necessity of CEA labwork

Postby dianetavegia » Mon Oct 08, 2018 6:30 pm

It might be his age. CEA is elevated (false positives) for a number of things, including age! One study of 'healthy people' in senior living facilities found most had elevated CEA's. After death, autopsies found NO cancer or cause for the elevation.

I'd still demand a baseline and regular CEA's. Unless he's very young for his age (I'm 68 and hubby is 71 and we're not the norm for our age) he won't get the care he would if he were my age.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

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

radnyc
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Re: Question about necessity of CEA labwork

Postby radnyc » Tue Oct 09, 2018 7:41 am

My two cents. Your dad is 87 years old. If the cancer is stage 2 and slow moving I would not subject myself to invasive procedures, surgeries or aggressive chemotherapy. I would be finding a way to fight the disease mildly and concentrate on quality of life. Your dad in fact might die from old age or other ailments, a full out cancer treatment at his age might do him in a lot faster.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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Aughhhh
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Re: Question about necessity of CEA labwork

Postby Aughhhh » Tue Oct 09, 2018 12:12 pm

Radnyc- I totally agree. That was actually one of the options I laid out for him. I explained chemo, what it entailed, and told him that he gets to decide how he wants to live his life. It didn't sound like something he wanted to do for the small increase in percentage it may give him in reaching a 5 year mark. He has to get past the idea that he must do everything the doctor tells him. These docs in this small town really take advantage of these older people. They have no other options, there are no other doctors anywhere. They would have to drive hours to go to a bigger city and most are not up for that. So they order unnecessary tests and many are invasive- which the people go along with - it's quite a racket. And you don't ever question them, I found that out. I am hoping that the oncologist will be a step up today. Thank you 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!

weisssoccermom
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Re: Question about necessity of CEA labwork

Postby weisssoccermom » Thu Oct 11, 2018 8:08 pm

Well Hi! Haven't seen you around in a LONG time! Sorry to hear about your dad though.
I was a stage IIA (rectal cancer) and even though it was patently obvious that CEA was not a good marker for me (at diagnosis level was 0.5 with a fairly large 4 X 6 cm tumor), my onc ran a test every 3 months, then every 6 months and although I'm 12 years diagnosis, I still get it run every year by my GP. (long ago transferred care from onc to GP). I'm not sure why any onc would say that.

As for chemo, personally I wouldn't put any 87 year old through it. Now, IF the onc wants to ONLY do a chemo lite like Xeloda.....maybe....but then again, if the doctors have the attitude that they know best....it's more than likely that he will recommend the 'standard of care'....FOLFOX or XELOX. IMO, that's totally unnecessary for someone of your dad's age. Make sure your dad knows ALL the facts. Does he really want to get a port placed? Does he want to run the risk of neuropathy from the oxi? Does he want to potentially have a pump for 48 hours? These are things that he needs to be aware of so that HE can make the decision about his care.

So sorry your dad is going through this. Glad that he got his scope though. I've heard that most docs stop recommending them at age 85 simply because even if cancer is found, most people at that age will refuse treatment. How has your dad done with the surgery? The surgeon and GP need to stop playing oncologist....they aren't trained in oncology and need to limit their opinions to what they know. Hopefully the oncologist will have more common sense and will talk to your dad about all of his options.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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Aughhhh
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Re: Question about necessity of CEA labwork

Postby Aughhhh » Fri Oct 12, 2018 12:26 pm

weisssoccermom- Well hello there!! It HAS been a very long time. I'm so glad you are doing well. My dad went to see the oncologist. No chemo. Yay! Still nothing on CEA's but he ordered genetic testing and a PET scan. I thought the genetic testing was weird because my genetic testing was negative. Also, was curious about the PET scan because surely they wouldn't treat things if they found something? His lymph nodes were negative, CXR was negative. And his surgeon who apparently has xray vision said his liver was fine. I don't know, everything is being done so strangely that I don't even know what to say. I asked my dad to ask for a final report for staging on his tumor but he didn't. So that's what we know. He is happy about the no chemo and to be honest, so am I.

Thank you everyone for your responses. As always, you are the best. Best of luck to everyone. I think about this board all the time, even though I don't venture in here every day like I used to.

Pam
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!

radnyc
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Re: Question about necessity of CEA labwork

Postby radnyc » Fri Oct 12, 2018 12:35 pm

Pam, that all sounds very positive for your dad. Seems the oncologist is taking his age into account, as he should, to guide the treatment. Keep us informed.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

teresajj1
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Location: Florida

Re: Question about necessity of CEA labwork

Postby teresajj1 » Fri Oct 12, 2018 2:46 pm

CEA should always get done. Its just blood work so theres no reason not to do it. I was stage 3 and never had an elevated CEA. 2 years later, boom CEA 447. My CT a few months earlier showed nothing. I would insist on having it done as many times CT scans are not reliable.
Dx 3/16 @ 36yrs Stage IIIB-6/18 Stage IV
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447 & CA-125 144
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
10/2018 Clear CT

weisssoccermom
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Re: Question about necessity of CEA labwork

Postby weisssoccermom » Fri Oct 12, 2018 7:56 pm

Pam....I agree....why the genetic testing unless the onc is wanting to make sure that if there is something he can tell the siblings and children?? Will Medicare even pay for that? I'd check that before he has that test done just in case your dad gets stuck with a pricey bill! That would stink!!
Not sure why the PET either. Would your dad consent to treatment IF they found something? If not, then why do that test either?

Too often, I think docs just treat people as though everyone is the same....'standard of care' and all that stuff. That's fine for most but glad to see that the onc appears to be taking your dad's age into consideration.

Keep us informed. Glad that you, as well, are doing so well.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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retiredteacher
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Re: Question about necessity of CEA labwork

Postby retiredteacher » Sat Oct 13, 2018 5:55 pm

NCCN guidelines still have it listed. You can pull a copy and show it to your surgeon.
Terri
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

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Aughhhh
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Re: Question about necessity of CEA labwork

Postby Aughhhh » Sun Oct 14, 2018 12:52 pm

retiredteache- Thanks for the guidelines, that is really a great article. I just sent it to my dad. The surgeon won't speak to me. By the time I left, he wouldn't even acknowledge me in the room. Oh well. I am hoping my dad will read it and be informed. Thanks again.
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!

boxhill
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Re: Question about necessity of CEA labwork

Postby boxhill » Mon Oct 15, 2018 1:04 pm

I think everyone should have genetic testing. It determines the best course of treatment, it gives potentially gives information to descendants.

Why not have it?

I gather that my CEA is tested along with everything else before I have my infusions, but they don't bother to tell me what it is because my tumor didn't express it. At surgery, it was 3. A while ago I happened to find out it was 6.

Age is an individual thing. As a physician friend of mine says, there are the "young old" and the "old old." My mother is 95, lives alone in her house, does everything herself except mowing and plowing, reads The Economist and the Wall Street Journal as well as many novels, drives (safely), and occasionally babysits some of her great grandchildren.

The surgeon does indeed sound like a jackass. Luckily, your father will probably not have to have anything further to do with him.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT scans NED. Lung nodule likely calcified granuloma. Enlarged spleen.

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: Question about necessity of CEA labwork

Postby heiders33 » Mon Oct 15, 2018 6:26 pm

My CEA was 5.1 when I was diagnosed. I didn't really follow it during my initial course of treatment. Then it was 2.4 when I was diagnosed with a liver met. Today it's 1.8 and I am currently NED. Given that my initial CEA at diagnosis was a little higher than normal, but was apparently in normal range when the liver met was there, do you think CEA is a good marker for me? I'm at MSK where they automatically test it with each round of bloodwork. But I'm wondering whether I should be at all excited that it's only 1.8.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

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Aughhhh
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Location: Portland, Oregon

Re: Question about necessity of CEA labwork

Postby Aughhhh » Tue Oct 16, 2018 11:59 am

heiders33 - I agree that CEA should be checked and followed. When I was diagnosed, my CEA was 1.9 (normal). However, when checked after the tumor was removed, it dropped to 0.4 and stayed there. My oncologist told me that it was not a big indicator for me, but she was going to check it anyway and if it started to rise, we needed to look further, especially if I was not having any symptoms. It stayed rock stable at 0.4 for years and then one year it went up to 0.9 (also normal and within lab error). I called her and she ordered a colonoscopy just to be sure and I had 7 adenomas. Coincidence? I don't know. Weird, ....maybe. They were pre cancerous, so I don't think my CEA should have gone up but it did. And it immediately went back down after they were removed.

I guess we will never know if my dad's CEA was up with the tumor because they didn't check it and as far as I know, they still have not. There is only so much I can do to get these doctors to draw it. They have dug their heels in and refused.

I am accepting that my dad is 87 and he will live out the rest of his life the way he wants, so I'm standing down and hoping for the best.
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!

Brearmstrong
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Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question about necessity of CEA labwork

Postby Brearmstrong » Tue Oct 16, 2018 12:28 pm

Heiders33- my story is that I was 4.6 at diagnoses with a 4 cm tumor and 8 positive nodes at the time. After surgery went down to .5 (yay) but with recurrence it jumped from 3.6 to 8 in a few weeks. CT was clear but nodes lit up in distant area on a PET and turned out 1 enlarged node turned into 5 positive for cancer...Second surgery and then 2.3 then 1.0 and just last week 1.3. I think that even small changes in CEA in some people can be telling while in others, big jumps turn out to be nothing. CEA can be a bugger for sure!
45 F Jan 17 Mom 2 boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0 oct 18 1.3
Oct 2017 clean CT
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED! Nov 18 CT clear, stay on Xeloda.

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

Re: Question about necessity of CEA labwork

Postby heiders33 » Tue Oct 16, 2018 5:12 pm

Thanks for your input, everyone! I guess I should be happy that it’s going down.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI


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