new to the forum i'm worried about my mom high cea

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emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

new to the forum i'm worried about my mom high cea

Postby emile » Sun Jan 27, 2019 1:01 pm

I'm scared that my mother is getting stage 4 colon cancer after 3 years ned I'm still hoping is it just fear in my head.
I have read a lot about cea from what I understand there are 2 normal levels 2.5 non-smokers 5.0 smokers and the Roche method which has a normal 5.0 cea for non smokers and 10.0 for smokers ?
What test the hospital my mom is going to is using I really don't know.
my mother quit smoking in 1988 so she should be in the non smokers range however my mom is 76 years old i know age can play a role i have read on forums.
what makes me now even more worried is that my mom cea went up a full 2 years.
here is my mother's medical history explaining the best I can in my limited English.
March 2008 my mom broke her hip bone after she trip over a stone.
recovery from that was fast she got a gamma nail in her hip that helpt to speed up recovery
she was walking just 4 weeks later.
i went on google I thought it's not normal that you can break a hip bone from
a short fall i found alot of websites that say it can be Osteoporosis.
so i talk about a dexa scan the doctor at the hospital thought it was good idea so in
May of 2008 she got one and it was confirmed that she got Osteoporosis. so doctor Prescribed Bisphosphonate.
from this point on my mom slowly got more tired I thought it was from the Osteoporosis.
(that was so stupid of me thinking about it now)
In Aug 2012 my mom whent for new dexa scan, the doctor tell my mom the Osteoporosis has become a little worse and scan showed my mom was starting to get
arthritis as well,
as time went on my mom got more tired however there was no pain in hands or legs she only got lower back pain.
at this point i thought tiredness was from Osteoporosis and arthritis what was i wrong!
From 2014 to 2015 she got more and more tired some times for months staying at home and was getting harder and harder to walk or go outside and she was getting very pale
i thought this was because of lack of sun and sleep she was also getting alot of constipation.
mar 2015 the constipation got alot worst she was just too tired to go to the toilet so the weekend doctor Prescribed laxatives.
after looking at her face she thinks it was very pale so she take a blood test 2 days later
it come back that my mom was very anemic and need a blood transfusion so she got send to the hospital.
the docters at the hospital say the anemia had to have come
from some where so they say she has to do a colonoscopy thinking
the link was the constipation.
May 12 2015 colonoscopy found 2 polyps 1 tumor my mom was in shock.
one day later ct scan plus lung photo.
2 weeks later ct scan and lung photo results lungs no cancer liver no cancer but found kidney cancer 1.5 cm and a gallbladder full of stones
no lymph nodes show up so we where very happy but docter say that some times
lymph nodes don't show up on ct scan if they have cancer
end of june 2015 my mom had the surgery to remove the colon cancer and gallbladder full of stones
the oncology report 8 cm tumer cuts all clear stage 2a colon cancer t3 n0 m0 but with vascular invasion grade Well-differentiated /Moderately differentiated so over all good.
Because of the positive outcome and the huge fear my mother has for chemotherapy
the oncologist decided chemo wasn't necessary she believed that this cancer was dealt with with surgery alone.
cea 3.8 aug 2015
aug Ultrasound clean liver kidney cancer got to 2 cm
otk 2016 ct scan clean liver kidney cancer got to 2.3 cm
doctor say time to take action against kidney cancer
with cryoablation of kidney
nov 2016 Ultrasound clean liver and bladder
cea 4.2 nov 2015
cea 4.7 feb 2016
feb 2016 cryoablation of kidney
feb 2016 all 3 biopsy failed to find cancer tumor or cyst its still unknown but radiologist 80% sure it was cancer
mar 2016 ct scan clean lungs clean liver now ned
cea 5.3 jun 2016
juli 2016 Ultrasound clean liver dead kidney cancer got to 1.7 cm
cea aug 4.7 2016
aug 2016 Clear Colonoscopy just 2 very small polyps
aug 2016 low grade fever for weeks tiredniss
October 2016 CRP level too high
October 2016 Ultrasound clean liver and lung photo was good
October 2016 but still low grade fever for weeks and tiredniss
nov 2016 cea 4.1
nov 2016 i wanted a ct scan for my mom to be sure kidney cancer was dead doctor at first say not to worry its to small to
come back and do scan on jan 2017 but i push for a scan and got one that was life saver i think
nov 2016 ct scan clean liver worry about kidney cancer returning ct show 1.5 cm spot
dec 2016 docter confirm that kidney cancer has returned radiologist can see
new blood vessels to tumer
plan of attack partial kidney nephrectomy or full kidney nephrectomy
jan 2017 she now got Antibiotics and the low grade fever now gone
feb 2017 cea 3.7
feb 2017 partial kidney nephrectomy operation was a success
feb 2017 pathologist report found a high grade 3 1.5 cm kidney cancer and positive surgical margin pt1b ?
feb 2017 pathologist made a mistake he or she took the full kidney mass removed for the size! it was 4 cm removed
feb 2017 found a high grade 3 1.5 cm kidney cancer stage pt1a and and positive surgical margin no plan of attack just scans
my mom decided to go for second opinion for full kidney removel or scans as my mom has a high risk cancer ?
april 2017 ct scan all clean lung photo clean still ned.
may 2017 whent for second opinion to the only cancer hospital in netherlands avl https://www.avl.nl/
both the doctor at are local hospital and at the avl say that cryoablation of the kidney made tumer fall apart
on removal and believe the positive margins are false positive.
We decided to go onto the wait and see program.
may 2017 cea 4.3
may 2017 mri all clean still ned
seb 2017 mri all clean still ned
seb 2017 cea 4.4
dec 2017 ct scan all clean still ned
feb 2018 cea 4.8
mar 2018 new dexa scan Osteoporosis got alot worst Bisphosphonate is no longer working whent over to denosumab
may 2018 cea 4.9
may 2018 mri all clean still ned
juli 2018 Ultrasound clean liver and lung photo was good
oct 2018 my mother had a possible Tia with unusual symptoms
temporarily losing the ability to control a tv remote control and phone regaining that ability within 20 minutes
feeling a bit disorientated afterwards the doctor's decided not to take a chance on whether or not it was a TIA
and subscribe her blood thinning medicines and medicines to lower blood pressure.
nov 2018 cea 5.5 omg
nov 2018 ct scan all clean still ned.
jan 2019 cea 5.8 omg anyone here has an idea what made her cea level go up beyond normal range ?
is anyone on this forum that has similar cea levels with no cancer returning ?
currently our oncologist wants to do new cea blood test in March 2019 because of the clean ct scan from nov 2018 is this the right course of action ?
Last edited by emile on Thu Feb 28, 2019 9:48 pm, edited 3 times in total.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

KimT
Posts: 663
Joined: Sat Feb 20, 2010 8:53 pm

Re: new to the forum i'm worried about my mom high cea

Postby KimT » Sun Jan 27, 2019 2:21 pm

That is a lot of information. We are not doctors however and we are not qualified to make speculations about your mothers case. All I can advise is to keep advocating for your mother and seek other opinions from doctors if you are not satisfied with the care your mother is getting. But we are not experts. We are just people who unfortunately got cancer. We all have a different experience. What I have learned in the 10 years I’ve been on this board is that cancer follows no rules. Best of luck to you and your mother.
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

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Sun Jan 27, 2019 4:01 pm

I understand people here are not doctors. and are just dealing with cancer like I am now .
nevertheless I hope my mom cea has nothing to do with cancer.
I go with the blood test folllow up and hope cea drops back down to below 5.0
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

stu
Posts: 1166
Joined: Sat Aug 17, 2013 5:46 pm

Re: new to the forum i'm worried about my mom high cea

Postby stu » Wed Feb 06, 2019 2:40 am

Hi ,
How is your mum’s CEA now ? Interestingly my mum’s CEA went up to 5.5 in Nov from 4 and dropped to 5.2 . She was scanned six weeks before and the scan was good .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: new to the forum i'm worried about my mom high cea

Postby Mris_90 » Wed Feb 06, 2019 7:48 am

Hello fellow dutchie. My mom's cea was elevated pre-op and pot-op as well. Been around 5-6. Her last scans were fine. I get that it's worrisome, it worries me a lot too. But my oncologist said he had patients with CEA levels up to 10, which were healthy and all, so. He said it could be a lot of things that might make the CEA go up which aren't related to cancer.

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Sun Feb 10, 2019 1:19 am

stu wrote:Hi ,
How is your mum’s CEA now ? Interestingly my mum’s CEA went up to 5.5 in Nov from 4 and dropped to 5.2 . She was scanned six weeks before and the scan was good .
Take care ,
Stu
My mother will have a new cea test on 5 March if the result is again a higher cea level I'll be pushing for new ct or mri scan.
I'm hoping this is still just nothing and her cea drops down back to normal range.
Last edited by emile on Mon Feb 25, 2019 1:55 pm, edited 1 time in total.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

stu
Posts: 1166
Joined: Sat Aug 17, 2013 5:46 pm

Re: new to the forum i'm worried about my mom high cea

Postby stu » Sun Feb 10, 2019 11:48 am

Sounds like a good plan .
Does your mum have access to PET scans ?
They are sometimes very reassuring in such circumstances.
Hoping it goes down for all of them .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Sun Feb 10, 2019 6:32 pm

stu wrote:Sounds like a good plan .
Does your mum have access to PET scans ?
They are sometimes very reassuring in such circumstances.
Hoping it goes down for all of them .
Stu
my mother already asked her  oncologist   for a PET scan
I believe the hospital is willing to give it if necessary.
I would definitely ask if it's possible if the cea is going up again.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Sun Feb 10, 2019 6:43 pm

Mris_90 wrote:Hello fellow dutchie. My mom's cea was elevated pre-op and pot-op as well. Been around 5-6. Her last scans were fine. I get that it's worrisome, it worries me a lot too. But my oncologist said he had patients with CEA levels up to 10, which were healthy and all, so. He said it could be a lot of things that might make the CEA go up which aren't related to cancer.

your mum cea level is maybe elevated because of  COPD
in this research it shows people with  COPD have a higher cea.
https://www.karger.com/Article/Pdf/215726
Last edited by emile on Mon Feb 11, 2019 1:55 pm, edited 1 time in total.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

User avatar
CRguy
Posts: 9956
Joined: Sun Feb 10, 2008 6:00 pm

Re: new to the forum i'm worried about my mom high cea

Postby CRguy » Sun Feb 10, 2019 6:56 pm

KimT wrote:We are not doctors however and we are not qualified to make speculations about your mothers case.

I believe, while we all try to be helpful here, we DO need to be careful about speculating on someone else's medical condition.

KimT's quote above sums that notion up nicely.

Now for a more general input on the CEA issue, it is true that inflammation anywhere in the body can increase CEA ...
BUTT... thoracic issues can have a more pronounced effect ( e.g. smokers have higher "normal values" than non-smokers )
could COPD have an effect = Yes it is possible, BUTT that is different than saying it IS the most likely cause.

Let's just be careful with what we say out there folks

Best wishes to all on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Mon Feb 11, 2019 2:07 pm

CRguy wrote:I believe, while we all try to be helpful here, we DO need to be careful about speculating on someone else's medical condition.

KimT's quote above sums that notion up nicely.

Now for a more general input on the CEA issue, it is true that inflammation anywhere in the body can increase CEA ...
BUTT... thoracic issues can have a more pronounced effect ( e.g. smokers have higher "normal values" than non-smokers )
could COPD have an effect = Yes it is possible, BUTT that is different than saying it IS the most likely cause.

Let's just be careful with what we say out there folks
Best wishes to all on the Journey
CRguy
you're right with cancer you just never know.
I really hate the cea roller coaster its stressful when levels go up.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Tue Mar 05, 2019 9:29 am

My mom's cea is now 5.4.
My mom will have a new blood test in 6 weeks to see if this is a downwards trend.
I'm still a little bit stressed here that she hasn't returned to normal level, but I also understand the hospital isn't gonna order unnecessary Scans.
Last edited by emile on Wed Mar 06, 2019 10:20 am, edited 1 time in total.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

stu
Posts: 1166
Joined: Sat Aug 17, 2013 5:46 pm

Re: new to the forum i'm worried about my mom high cea

Postby stu » Wed Mar 06, 2019 2:29 am

That is encouraging. Hope it keeps the downward trend . It would be so nice to know what caused the spike but enjoy it anyway .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

emile
Posts: 10
Joined: Thu Jul 14, 2016 7:51 pm

Re: new to the forum i'm worried about my mom high cea

Postby emile » Wed Mar 06, 2019 12:03 pm

stu wrote:That is encouraging. Hope it keeps the downward trend . It would be so nice to know what caused the spike but enjoy it anyway .
Stu
 yes I would like to know what's causing the spike but her only symptom she has, is a slight bit of arthritis, 
it has been pretty much the same over the years  not getting any worst or better.
 so it's probably going to stay a mystery just like everybody here that's having a above normal cea range.
 I am a bit disappointed at the local hospital that they don't know who is supplying
 the cea test.
Nobody can answer her if they using, Bayer/Siemens or Roche diagnostics. 
 My mom ask her oncologist but she is clueless.  So now she asked the workers at the blood test department again clueless.  
Finally we attempted to get information by calling Roche diagnostics.  
Where the worker basically said they cannot disclose there buyers and they told us to contact the hospital, well ain't that just great. 
So nobody can give me an answer leaving me just to Google where I discovered  a news article were it stated in 2014 
Roche diagnostics and santeon Hospitals made a deal supplying the diagnostic equipment https://www.antoniusziekenhuis.nl/nieuw ... iagnostics its all in dutch
I don't know if this is still the case but it is the only information I got.
Caregiver to my mom 76
06-2015 CRC t3n0m0 stage 2a with vascular invasion grade 1/2
LN: 0/41 decided not to have chemo
ct mri scans ned so far last scan 5-2019
Colonoscopy clear 8-2016
2-2016 cryoablation of kidney cancer 2-2017 partial kidney nephrectomy found CCRCC pt1a high grade 3 1.5 cm with positive surgical margin
cea 3.8 8-2015 4.2 11-2015 4.7 2-2016 5.3 6-2016 4.7 8-2016 4.1 11-2016 3.7 2-2017 4.3 5-2017 4.4 9-2017 4.8 2-2018
4.9 5-2018 11-2018 5.5 1-2019 5.8 3-2019 5.4 5-2019 6.1

Beckster
Posts: 374
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: new to the forum i'm worried about my mom high cea

Postby Beckster » Thu Mar 07, 2019 6:44 am

emile wrote:
stu wrote:That is encouraging. Hope it keeps the downward trend . It would be so nice to know what caused the spike but enjoy it anyway .
Stu
 yes I would like to know what's causing the spike but her only symptom she has, is a slight bit of arthritis, 
it has been pretty much the same over the years  not getting any worst or better.
 so it's probably going to stay a mystery just like everybody here that's having a above normal cea range.
 I am a bit disappointed at the local hospital that they don't know who is supplying
 the cea test.
Nobody can answer her if they using, Bayer/Siemens or Roche diagnostics. 
 My mom ask her oncologist but she is clueless.  So now she asked the workers at the blood test department again clueless.  
Finally we attempted to get information by calling Roche diagnostics.  
Where the worker basically said they cannot disclose there buyers and they told us to contact the hospital, well ain't that just great. 
So nobody can give me an answer leaving me just to Google where I discovered  a news article were it stated in 2014 
Roche diagnostics and santeon Hospitals made a deal supplying the diagnostic equipment https://www.antoniusziekenhuis.nl/nieuw ... iagnostics its all in dutch
I don't know if this is still the case but it is the only information I got.


I know that my cea test is through the Roche...I use LabCorp. When I pull up my bloodwork online, it states "Roche ECLIA methodology Nonsmokers <3.9
Smokers <5.6" under the cea result. Can you get a copy of the bloodwork? Maybe it would be listed.
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 (path) 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
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18, 6/19 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, 12/18 2.5 3/19 3.1 6/19 3.1
Clear Colonoscopy 10/17 :D


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