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CEA of 140

Itsalexander's picture
Itsalexander
Posts: 4
Joined: Aug 2019

Hi - I'm Alexander, 32, new here. Yesterday officially diagnosed with Stage IV and that it showed up on liver and lung also on the PET scan I had Thursday.

It started in June, went to ER, they found a tumor, removed part of my small intestine and found lymph node behind it and a node in fatty tissue that were cancerous. I think 2 out of 5 lymph nodes they removed in total. 

 

Anyway right after surgery it was 19. Then about two weeks ago with my oncologist it was 47. I freaked out bad.

 

Right now I am already numb since hope it was just local and everything got removed got crushed because of the PET results.

 

I feel light headed and not well. Just saw my CEA marker was 140. I see people freaking out when its 5 or 6. I have 140. 140. I can't stop thinking about that now.

 

Is it some kind of super cancer growing REALLY fast right now or what? The fact CEA are not guaranteed doesn't comfort me because its obvious I have Stage 4 and its progressing so there must be some truth to it.

 

Have there been higher number? I need some positive facts/success stories if possible because this CEA is making me so numb like I am beyond a panic attack level. 

 

Thank you for reading. 

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

I am so very sorry that you are here.  It is not the sought after forum, that is for sure. 

I certainly won't lie to you and tell you not to worry, because that would be stupid on my part and insulting to you. 

Of course a rising CEA can be a sign of Cancer, as you well know.  

There are members here who are doing well after having a CEA in the hundreds. Or a CEA that has flip flopped all over the place. It does not mean that your Cancer is spreading like wildfire.  

The key thing now is to see what your Oncologist plans to do with you. Hit it hard with chemo, is probably the next step. 

While you will never stop worrying, try your utmost to fill your mind with positives.  You are being treated, that is a positive. I hope you have a good support system, loving family, friends, community. People who care. Thats a positive. 

Once your Onc comes up with a plan of action, you will feel much better, have somehting to aim for and things will settle, emotionally. 

When I got to that awful stage of panic, I discovered guided meditation and it worked miraculously for me.  Try to find something that works for you, to help bring the anxiety level down.  Stress and Cancre are buddies, don't put the two together for long, OK. 

You are so young. That goes in your favour.  

Stick with us and we'll help you through it. 

Tru

Itsalexander's picture
Itsalexander
Posts: 4
Joined: Aug 2019

Thank you. I just feel so numb. The suddenly jump of + 100 scared me, so I was wondering if it means its very aggressive cancer or not. 

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

that is not somehting we can tell you. 

I do know that surgery can effect CEA levels also. 

Just like the statistics, try to put the CEA numbers in the back of your mind, and concetrate on moving forward with whatever treatment your Onc suggests.  

I know it sounds impossible right now, but tell yourself and believe that you will beat this, and then do everything you can to make it happen.  

I am Stage IV surviving five years four months.  Allot has gone into getting me to this point, but positive attitude is on that list. 

You CAN do it. Might be a bit of a rough road for quite a while, but it is worth it. 

Tru

Itsalexander's picture
Itsalexander
Posts: 4
Joined: Aug 2019

I appreciate it, but I've always worked with realism and facts. It's very hard to change that to just being positive. Even though i finally understand how important that is. Do you still get chemo? 

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

My last chemo treatment was in 2013.

I had liver surgery in 2014, but didn't follow it up with more chemo, thank goodness. 

Tru

 

Itsalexander's picture
Itsalexander
Posts: 4
Joined: Aug 2019

I'm so happy to hear that for you. What stage were you at? If you don't mind me asking of course. I thrive on success stories. 

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Anxiety can be overwhelming.  One thing that can help is meditation.  When I was diagnosed, I found a decievingly simple book very helpful: You are Here.

I am very sorry you have joined this forum, but no matter what your future, there are likely many days ahead to live to their fullest.

Butt's picture
Butt
Posts: 289
Joined: May 2018

It is more an issue where the cancer spread and not what is CEA. You just had PET.

LSU2001
Posts: 22
Joined: Dec 2017

Welcome to the forum that nobody wants to join.  I won't insult you and say don't worry too much about the CEA level at this time but it may mean little right now.   I was diagnosed at age 48 with stage IV rectal cancer with the primary tumor at the rectosigmoid junction with metastasis  to liver with over 20 tumors spread over both lobes.  My CEA at the first test in April of 2016 was  65.8.  If you look at the chart I included you will see that after the first test which was before any treatment, the CEA level steadily goes up during my radiation treatment until it hit a peak of 233.  Once I started Chemo, the CEA level dropped until right around my liver surgery.  I had a two stage liver resection where over 70% of my liver was removed and the CEA began to move up a little but not major.  The next spike occured during a 3 month chemo break and the cancer progressed a bit and the CEA level jumped up to 53.  I got back on Chemo after my break and after one treatment the Level fell to 26 or so.  My doctors both locally and at MD Anderson cancer Center agree that for me CEA seems to be a good indicator of tumor activity and they put a good bit of weight on it now.  At first the docs kinda downplayed it until they were confident that it was a good indicator.  

To go ahead and shorten this post, I will say that currently I am still taking pretty aggressive chemo but I have 5-6 very small (subcentimeter) lesions on my liver and they have been stable over the past 6 months.  My primary tumor was totally destroyed by the radiation and chemo so I did not have to have a rectal resection.  I do suffer from some chronic and sometimes very severe rectal pain but I am working on getting that resolved but it has been a struggle.  I also suffer from some side effects from the chemo but by and large I am doing pretty well.  Until the past few weeks I have worked full time as a high school principal other than a few medical leaves for the surgeries.  I have a pretty much etty good quality of life and am still very active.  I maintain a large garden, I still fish regularly by myself in my boat.  I pretty much do what I want and the only limiting factor right now is the pain and side effects.  Basically, if I am haveing a good day I can pretty much be normal.  If it is a bad day with pain or a couple of days around chemo then I try to rest and recuperate.  

I will be glad to try to help with my experience but right now, you need to do exactly what you are doing, seeking answers, learning and most importantly, in my opinion , talking to people who have experienced similar treatments and problems as you have.  I hope this helps but I keep telling people that I am playing with house money now since I have already lived 1.5 years beyond my prognosis of two years with treatment 6 months to a year without.  

stay strong and just know there is a plan even if we don't realize it or even like it.  

Best wishes 

Tim

Aug 06, 2019

5.7 ng/mL

H

Jul 09, 2019

6.0 ng/mL

H

Jun 12, 2019

5.1 ng/mL

H

May 08, 2019

4.5 ng/mL

H

Apr 10, 2019

4.6 ng/mL

H

Mar 20, 2019

6.7 ng/mL

H

Feb 05, 2019

26.4 ng/mL

H

Jan 21, 2019

53.5 ng/mL

H

Nov 14, 2018

3.1 ng/mL

H

Oct 03, 2018

3.2 ng/mL

H

Sep 05, 2018

5.4 ng/mL

H

Jul 24, 2018

2.8 ng/mL

 

Jun 06, 2018

4.3 ng/mL

Apr 26, 2016

65.8 ng/mL 

H

May 02, 2018

5.1 ng/mL

H

Mar 14, 2018

6.6 ng/mL

H

Oct 17, 2017

3.6 ng/mL

H

Aug 22, 2017

3.0 ng/mL

 

Jul 18, 2017

3.6 ng/mL

H

May 19, 2017

3.6 ng/mL

H

Jan 23, 2017

2.0 ng/mL

 

Nov 30, 2016

2.4 ng/mL

 

Oct 25, 2016

3.7 ng/mL

H

Sep 27, 2016

3.2 ng/mL

H

Aug 30, 2016

4.0 ng/mL

H

Aug 16, 2016

4.2 ng/mL

H

Aug 02, 2016

5.5 ng/mL

H

Jul 19, 2016

9.8 ng/mL

H

Jul 05, 2016

17.4 ng/mL

H

Jun 20, 2016

86.1 ng/mL

H

Jun 06, 2016

233.6 ng/mL

H

May 23, 2016

167.7 ng/mL

H

May 09, 2016

90.3 ng/mL

H

     

 

Annabelle41415's picture
Annabelle41415
Posts: 6151
Joined: Feb 2009

Welcome to a board you never wanted to join.  I'm sorry that you are going through all of this at such a young age.  A rising CEA is never a good thing but don't give up hope.  There are people on here that have been stage 4 and have overcome this disease. 

You have come to a great group that can help you get through all of this.  There are many experiences here and we are all willing to share them with you.

Your doctor will put you on a plan that will address your situation.  Once you have your "cocktail" scheduled for you, come back with any questions about what you will be on as we can help you with the symptoms that you might get.  Just remember, not everyone that goes through treatment gets sick.  There are many that are going through treatment that hold down a full time job also.

It's always helpful to take another pair of ears with you when you visit your doctor too.  A lot of times when you hear something, your mind tends to dwell on that one thing and you miss the rest of the conversation.  Plus it will either confirm or set you straight on something you might have heard incorrectly.

Wishing you the best.

Kim

Butt's picture
Butt
Posts: 289
Joined: May 2018

Annabelle, besides Tru who are our members who overcomes stage 4? I mean has been NED for let’s say 4 years.I was thinking about it another day but have a hard time recalling names besides Tru? Butt

mom_2_3
Posts: 964
Joined: Nov 2008

Click on my name to see my "About me" page.  But synopsis is:

11/10/2008: Diagnosed Stage IV with 5 liver mets

11/24/2008: Started FOLFOX

02/20/2009: Colon resection, liver resection, HAI pump implanted

03/15/2009 through 11/02/2009: systemic chemo treatments (stopped Oxi on treatment #7 due to anaphylactic shock, continued 5FU only as well as FUDR monthly via my HAI port).

02/20/2019:  Celebrated my official 10 year NED

 

I kept a list of names when I was first diagnosed.  I hope this gives you hope.

Amy

Annabelle41415's picture
Annabelle41415
Posts: 6151
Joined: Feb 2009

I'm so glad you chimed in because I've seen others on this board that just don't post as much anymore, but can never remember their screen names.  I'm so glad to hear you are 10 years NED.  Continued health and thanks for the update.  If you didn't post this before about your status, it would be a nice post for the community to let them know how you are doing after all these years.  Good to see your post again.

Kim

Kazenmax's picture
Kazenmax
Posts: 343
Joined: Feb 2016

I started out as stage 3b Rectal cancer. About 2 years the cancer returned in my left lung making me stage 4. However, both times I had no lymph involvement. So I guess even within stages.... there are degrees to consider.

Both times and all during treatment my CEA never got above 2.

k

Butt's picture
Butt
Posts: 289
Joined: May 2018

i started with 2200 ( it is not a typo). After 12 chemos I was in 30s. After a liver resection I was around 5. After that it started going down. I thought it was sensitive for me. I had a recurrance with CEA 1.7. Both me and oncologist were shocked.

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

I'm on this forum because my Husband was diagnosed with Colon Cancer this past January. His CEA level was never high. My primary care doctor explained to me that no individuals CEA is a set number and it is only used as a marker. So, what is the number when diagnosed, Then after Sugery, and then during and after Chemo. In his case it never really fluctuated. It seems that it is just a tool in the toolbox but not really used as diagnostic. I would not worry at all about the number. You have a diagnosis, the next step is the game plan. Then get a second opinion or third. Then get busy following through on the plan that you choose. You will begin to feel empowered. You are young and that gives you an advantage already. Also, if you are healthy-fit, lean, active, eat healthy, etc. you have another huge advantage. My primary care said that being young and healthy wont keep a person from getting cancer but it is huge in the statistics of those that get through cancer treatment and move on with a long healthy life. In the words of my dearest friend and cancer survivor herself - you have cancer but you are not going to die of cancer. Keep that in your mind and heart and stay in touch as you progress through this. You will meet many people in this forum and I have found it to be incredibly helpful and comforting. We are all with you on this journey.

Andrea

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