CEA level 37, is that very bad? So scared for my mom.

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Tbrand0413
Posts: 3
Joined: Fri Mar 30, 2018 6:54 pm

CEA level 37, is that very bad? So scared for my mom.

Postby Tbrand0413 » Fri Mar 30, 2018 7:06 pm

Today, My mom's (she's 59 years old) blood test came back with a CEA level of 37. Is that vety bad? She just had a 2nd biopsy done today. A MRI & CT scan is scheduled for next week. We dont have an official cancer diagnosis on paper yet but the doc feels it is. She does have a 5cm mass in her rectum. I can't take this. I am so scared. Im so scared to learn about this but I know we have to find out and get a plan of action together. I don't know what I will do if I lose her. Reaching out for help & guidance. Prayers and Hugs for all of you!
Daughter of 59 yr old Mother starting this scary journey. Awaiting official diagnosis. Have been told Rectal Cancer due to CEA 37 and location of 5cm mass. Awaiting 2nd biopsy result tested this week 3/27/18.

CatzinDJ
Posts: 45
Joined: Thu Dec 22, 2016 12:06 pm

Re: CEA level 37, is that very bad? So scared for my mom.

Postby CatzinDJ » Fri Mar 30, 2018 7:46 pm

I"m sorry you needed to come to this board, but I can tell you the people here will give you support and direction. Scared is very normal and I'm glad you are going to advocating for your mother. Moms are special people!

You haven't mentioned what state you live in. My suggestion is to ensure your mom is seeing a colorectal board surgeon. Start reading to learn more.

Once your mom knows more details, you might want to update your signature.
53 & Female
DX: Rectal Cancer (RC) diagnosed in Thailand
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016.
CEA 12/9/2016 2.8
CEA 6/8/2017 5.6
Colonoscopy and Cat scan June 2017 NED
CEA 3/2018 2.9
TB latent recently diagnosed.

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: CEA level 37, is that very bad? So scared for my mom.

Postby rp1954 » Fri Mar 30, 2018 11:56 pm

First, that is a serious number but it doesn't definitively tell you a lot of things. Conceivably possible something else, but likely a cancer. The big deal is whether a cancer has spread or is localized and where it is, e.g. rectal or colon cancer and details.

If it is well localized colon cancer, a curative surgery will typically drop CEA, even a large CEA value, much lower after several weeks and there could be a good chance of cure. Of course there are worse possibilities but you can still fight back, especially if you take early steps like we did, the first week after diagnosis.

RIght this moment, you and your mom can take productive, extra steps that improve her odds, starting before surgery or treatment. Below is what we've done before surgeries for metastatic colon cancer. It turned out the prognoses were pretty grim in our surgeons' eyes, improved chemistry changed the disease course:
(1) read, we found a series of articles from Life Extension with recommendations most useful. (linked below)
(2) Extra blood tests, below, particularly CA199 included, before and 7-14 days after surgery;
(3) LEF's pre-op anti-cancer, anti-metastatic chemistry - cheap, little known but very important for us to change some ugly statistics.

You are early enough after diagnosis to get some extra chances and serious advantages if you do some reading and take a few proactive steps today and this week. With thanks to OSM (she has several several posts that are valuable to read):

O Stoma Mia wrote:
rp1954 wrote:I would invest in extra initial blood testing, even though it is most useful and sensitive starting before surgery...

In my opinion, what rp1954 suggests is very important and is time-sensitive -- i.e., there is a window of opportunity when you can do a few things that can make a big difference in the long term. Often, that window-of-opportunity is at the very beginning of the journey, i.e., before active treatment ever begins -- i.e., during the period of time when a newly diagnosed patient is not ordinarily thinking of taking an assertive or pro-active position vis-à-vis the overall problem.

The link given above in rp1954's post is a good example:
For example, after DX and before any kind of treatment is done, the CEA tumor marker should be done in order to establish a baseline value. If it is not done before interventions are started, then the opportunity to have a reference baseline is lost forever. And there are many other examples like this. And some of these things, for whatever reason, might be overlooked by the medical staff who are handling your case.

I guess what I am saying is this: You have two weeks before your meeting with the oncologist. There are some things that you could be doing during these two weeks that could very well be considered long-term investments in your future. Just waiting around for the next round of test results to come in, or waiting for the next appointment date to be finalized don't count, as they are essentially passive activities and they don't change much of anything. What you need to do is to be more proactive as your treatment plan is unfolding.

There are other things that you could be doing that are more pro-active -- for example, checking up on the credentials of all the doctors that have been assigned to you so far, and making an effort to find better ones if the current ones do not have a good record. You can get second opinions on reports, analyses and tests that have been done by your doctors and you may find that there are other doctors out there who have a better grasp of your situation. And you can even decide that you are going to change doctors.

It's the same for hospitals, clinics and other health care institutions. There are accreditation standards established for hospitals that can be checked out. In the case of cancer treatment, there is a three-tier structure of accreditation, with the highest being NCI-designated Comprehensive Cancer Centers, of which there are 69 in the US located in 35 different states. Below that are the hospitals accredited simply as "Cancer Centers" and below that are all of the unaccredited hospitals. Thus, at the very beginning the patient should take a serious look at the hospital, clinic that has been chosen It may not be the best one that could be lined up. Generally speaking, the best hospital, if you can manage it, would be a high-volume comprehensive cancer center with a number of Board Certified colorectal surgeons, Board Certified radiology oncologists, and Board Certified medical oncologists.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Tbrand0413
Posts: 3
Joined: Fri Mar 30, 2018 6:54 pm

Re: CEA level 37, is that very bad? So scared for my mom.

Postby Tbrand0413 » Sat Mar 31, 2018 8:55 pm

Thank you SO VERY much for your reply and information! I feel like we are not moving fast enough. The surgeon keeps telling us that the process (waiting) is normal and it's okay because colon / rectal cancer is slow growing and a few more weeks will not hurt. This is just an update of what's happened So far:
She's had 1 colonoscopy/biopsy which came back "high-grade dysplasia" and then when we met with the surgeon for the 1st time he did a procedure to touch the mass and he felt that it is cancer therefore he ordered a blood test & another biopsy. We had the end biopsy done yesterday and during that appointment he notified is that the blood test result (CEA) number was 37 therefore he is 90% sure it's a cancer. We are now waiting for the 2nd biopsy result and for the MRI & CT scan to be done which is scheduled for next week. It's been 2 & 1/2 months since all of this started. I am so lost and confused. I feel like we are wasting precious time but the surgeon is reassuring us that the timing is normal and okay. We live in Ohio and have The James cancer center at Ohio State and everyone I talk to says I should take her there for a 2nd opinion. I appreciate your advise and the information you've passed on to me. I will definitely check into it. I appreciate everyone's help! Blessings to you all!
Daughter of 59 yr old Mother starting this scary journey. Awaiting official diagnosis. Have been told Rectal Cancer due to CEA 37 and location of 5cm mass. Awaiting 2nd biopsy result tested this week 3/27/18.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: CEA level 37, is that very bad? So scared for my mom.

Postby DarknessEmbraced » Mon Apr 09, 2018 8:58 am

I'm sorry you and your Mom are going through this!*hugs* I hope you won't have to wait long for test results1*hugs* Welcome to the forum! :D
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Teddybear
Posts: 37
Joined: Sun Feb 11, 2018 3:23 pm

Re: CEA level 37, is that very bad? So scared for my mom.

Postby Teddybear » Mon Apr 09, 2018 7:49 pm

You said you live in Ohio. That’s very lucky for cancer treatment. The James center is outstanding and also The Cleveland Clinic is one of the best in the country. I had my surgery at Univ of Cincinnati and my second opinion at the James center. The Univ of Cincinnati also has great board cert colorectal surgeons. Maybe set up a second opinion at James or Cleveland Clinic now. Your Mom will make a treatment plan and together with your support she will get through this. :D
DX CC Feb 2018
Feb 2018 Lap sigmoind resection
2A
T3N0M0/G2
0/14 nodes
Oncogene 14
Margins clear
MSS
April-June 2018 Xeloda

Tbrand0413
Posts: 3
Joined: Fri Mar 30, 2018 6:54 pm

Re: CEA level 37, is that very bad? So scared for my mom.

Postby Tbrand0413 » Mon Apr 09, 2018 8:30 pm

Hi. Thank you for your reply!! We have an appointment Set up for this Thursday at The James for a 2nd opinion! We saw her Surgeon with Ohio Health this morning but they still did not have a definite diagnosis for us as the 2nd biopsy came back as the 1st as "High Grade dysplasia." CEA test was 37. CT scan was normal. MRI was abnormal with swollen lymph nodes. So lost. Going for 2nd opinion later this week. I still dont know how to set up my signature with info. Thank you all for your support! ❤
Daughter of 59 yr old Mother starting this scary journey. Awaiting official diagnosis. Have been told Rectal Cancer due to CEA 37 and location of 5cm mass. Awaiting 2nd biopsy result tested this week 3/27/18.


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