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CEA rises .5 to 10.9 - 18.6 - UPDATE - BAD

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

That news sure took the wind out of my sales. 

Doc wants me to have a PET scan. Insurance wouldn't cover it last time, so he will talk with them. If they won't do it, he said an MRI on the liver (have a suspect spot there) will be done. 

Onward and upward. I will not be beat.

 

jen2012
Posts: 1607
Joined: Aug 2012

Crud Sue...so sorry to hear that.  Try not to panic yet...hopefully it turns out to be nothing.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

in the past?  At any rate, I hope this turns out to be just a bump in the road.  You're a very strong person, and if another spot has to be banished, you'll be the one to do it!

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

Has CEA been a good marker for you in the past?

After my diagnosis and bowel resection my CEA was normal, one month later it was up to 13. I had a CT and PET scan to see what was going on and both turned out normal. I then started treatment, so I didn't get another CEA until treatment was over. 

I have had two CEA tests since treatment started, both were low and now this high one. 

I don't know whats normal for me or not. I need to do a bit more research and any advise would be much appreciated. 

Thank you so very much for your kind words and support. 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I would have to wonder if this higher number is just a fluke.   If it went up all of sudden to 13 (which is out of normal range) and the PET didn't show anything, and then it went back down to normal, then it does seem possible that you are just one of those people for whom CEA is not a perfect diagnostic tool (and there are many crc people like that).  CEA can go up for a number of non-cancer related reasons, so when it goes up, they certainly do need to check things out, but this makes me hopeful that maybe things will turn out to be ok.  I hope so.

How soon will you be able to get more information?

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

Your words give me hope. 

I'm waiting to hear from the Oncologist office. I think they may be working the insurance company to get the PET cleared.

I know my Onc wanted me to get it done pronto. Meanwhile he's off holidaying in England. Lucky devil!

Brenda Bricco
Posts: 579
Joined: Aug 2011

This is not what I wanted to see... I am so sorry but I know you will rally and whoop it. Thinking and praying for you.

GOD'S blessings

Brenda

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

I love your final comment, onward and upward.   I understand struggles with insurance, hopefully you can work through this quickly.  Hang in there.   Keep your positive spirit!

UncleBuddy
Posts: 1019
Joined: Aug 2013

Think positive! Hopefully you'll get the PET scan. It did a better job on showing the specifics for my brother. I hope it's nothing. Take care of yourself.

Lin

Let us know how everything goes

wolfen's picture
wolfen
Posts: 1321
Joined: Apr 2009

I was just so taken aback when I read this, as I know you were! This damn cancer just seems to sneak back in. I am thinking of you & hoping for a positive oucome.

Luv,

Wolfen

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

I had this happen twice to me and both time I got a pet-ct done in a week or so after I got the cancer marker tests.

both times it detected a liver met . Latest was about 10'days back. Was a met of 1.6 x 1.5 mm in segment 4a . Difficult to resect with laproscopy - already had a liver resection a year and half ago.

have an MRI tomorrow and then doc will decide whether to go for a microwave ablation or something else.

procedure scheduled for day after. Earlier met was taken care of by radio frequency ablation.

so let's see what it is this time . My cea had gone up from approx 3 to 12 once and now from 4.7 to about 7. Last time the liver met was 2.6 or 3 cm . Maybe cause the cea then was caught rising after two months and this time i reduced the interval of the blood marker test to nine month.

hope there is not much activity in your case. Wish you the best.

Lovekitties's picture
Lovekitties
Posts: 3332
Joined: Jan 2010

I am so sorry to hear this news. 

Prayers on the way for better test results than expected and that there is another cause for the CEA rise.

Hugs,

Marie who loves kitties

janderson1964
Posts: 2215
Joined: Oct 2011

Sorry to hear that but you have the right attitude. I would say hope for the best and prepare for the worst.

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hi, Trubrit. Sorry to hear about your changed circumstances.  That's a real bummer. 

I would advise you to push hard for the PET scan if you can as it's really good at showing active cancer. 

 

good luck with everything

 

Karin

 

PatchAdams
Posts: 271
Joined: Nov 2011

 

This is an article on how many false positives there are in CEA testings.  Let's cross our fingers! 

http://meetinglibrary.asco.org/content/122986-143

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

I really appreciate this link, Patch. It definitely gives me hope. 

Chelsea71
Posts: 1170
Joined: Sep 2012

Shoot Sue.  Sorry to read this news.  I admire your fighting spirit.  You have a great attitude.

 

Chelsea

LindaK.
Posts: 490
Joined: Apr 2013

My husband's CEA went from 3.6 to 2 while a large aggressive tumor was growing in his intestines.  2.0 was the number a few days before the tumor was removed.  There are a number of items they look at combined before CEA alone is alarming (in my husband's case anyway) but obviously it was not a good indicator for his last tumor.  Try not to worry too much, easier said than done I know!

Linda

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

How I hate waiting. 

I called the Oncologist office and talked to a nurse. I asked if I can get another CEA test done, and she said 'sure'. I will get that done on Monday and hopefully have results by Thursday. If they are the same, then I'll go ahead with the PET. Of course I'm hoping there was a false positive, but we shall have to see. 

until then, I refuse to worry (too much). I figure worrying doesn't change the results and life is too short to waste a moment not being happy. 

 

Hooley's picture
Hooley
Posts: 156
Joined: Aug 2012

Hang in there Sue. Def praying for you...with God all things are possible. And yes, I found it hard to praise Him with a rising VEA But kusymimjust kept knowing and trusting him no matter what. Don't give the devil a hold. Keep'positive.  Yes u sure can so it !

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

Pretty obvious I wasn't going to wait until Monday. Don't even know why I thought it in the first place. I called the hospital, and my blood work order was there, so here i sit with my sticky bandage over the crook of my arm. 

I will call Monday or maybe Tuesday for my results. 

I guess it just feels good to be 'doing' something. 

DD3's picture
DD3
Posts: 132
Joined: May 2013

Hang in there.  My son's best friend just beat testicular cancer at the ripe age of 17. Yah, I'm really getting tired of cancer.  Yell Anyways, he had a high CEA level after treatment (I believe it was around 18) and they repeated the test two weeks later and was normal and stayed normal. He is all clear.  Please let us know...

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

All of these positive reports cheer me up no end. 

I am happy to see you're wife is doing well. Thank you for the update. 

Blessings!

lauragb
Posts: 370
Joined: Aug 2011

I sure hope your CEA rise turns out to be nothing.  I haven't posted on her for a while but saw this and thought I'd respond to you.  I just had a CEA spike show up on routine bloodwork.  It was 14.6.  Since CEA has not been a marker for me, my oncologist decided to do a recheck and lo and behold it was back down to 0.5 

So I am hoping for you that your recheck is back to normal and you won't need to have that PET scan.  Waiting is hard though, isn't it? 

 

Sending positive thoughts and prayers your way.

Laura

Trubrit's picture
Trubrit
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Thank you so much for posting. 

You can bet I will be posting just as soon as I read my report. I will probably wait until Tuesday to go down to the hospital to get it. 

 

Cathleen Mary
Posts: 827
Joined: May 2011

Holding our collective breath....prayers.

Hugs,

CM

DD3's picture
DD3
Posts: 132
Joined: May 2013

in Trubit.  Let us know.  As my boy always told my wife "you got this."  Cool

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

CEA rose once again to 18.6

PET scan on Tuesday April 15th

Oncologist appointment Wednesday April 16th

DAMN!

LindaK.
Posts: 490
Joined: Apr 2013

Try not to worry too much.  Good thing is you are getting your scan and hopefully figure out what is going on soon.  This is one good thing about trying to stay ahead of this beast.  Scanxiety stinks!

Linda

aggie0053's picture
aggie0053
Posts: 110
Joined: Mar 2011

hope everything goes allright for you

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

if CEA was a definite marker for you, that would be one thing.  As it is, I am still hopeful that this won't prove to be a sign of bad things.  I wish they could get you in for the scan sooner.  The waiting is so awful.

DD3's picture
DD3
Posts: 132
Joined: May 2013

is not what we wanted to hear.  Frown  Hang in there Trubit.  Praying for the best....

lauragb
Posts: 370
Joined: Aug 2011

I'm sorry to read your update but still holding out hope for you.

Sending thoughts and prayers to you as I know this week of waiting will be hard. 

Laura

Maxxhunt47
Posts: 4
Joined: Jun 2013

If you have cancer the Pet Scan will find it.  That's how they found mine.  Just hang in there.  So far I'm still here after having cancer twice.  Sending prayers and hope your way.

LindaK.
Posts: 490
Joined: Apr 2013

I hope you get some answers today, good luck at your appt. today.

Linda

PatchAdams
Posts: 271
Joined: Nov 2011

I did read that CEA is more indicative of liver mets than lung, etc. and a small met can removed by HR with no follow up chemo.  I'd be calling and asking about cancellations on that PET.  Six more days is  a long wait! 

I'm sure you've seen my links on liver resection, but I'm going to share them again, just in case.  Go for the cure! 

 

http://archsurg.ama-assn.org/cgi/content/abstract/141/5/460

 

http://www2.mdanderson.org/depts/oncolog/articles/11/4-5-aprmay/4-5-11-2.html

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

gosh TBrit....this is crappy news....so sorry to hear of that rise....hopefully you will move on to the next step smoothly....dang

mags

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

   Hugs mate,The sooner they do the pet,the sooner you will know what you are up against and yo can do whatever is required to overcome it. Good luck ..Ron.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

That's how my CEA went up   Up to 400+ and insurance would not approve pet 3 times. They did CTs and hope to be able to do a pet or scan here in a couple weeks.   I'm on Folfri and Erbitux,  only second infusion looking at 6 more (every 2 weeks) and see how it goes. 

 

Hang in there, you have a great attitude, it helpS. 

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

I bet it's a fluke.  I'm glad your insurance allowed the PET scan.  Seems like waiting is cruel and I hope you are able to get someone else's cancelled spot instead.  I've done that.  Also most hospital keep a secret emergency spot open so if you get anxiety call and see if they'll let you take it. 

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

I will hold onto my Tuesday appontment. It's a 300 mile round trip to the big city, and I like to go up with my husband who is working. I don't suffer from scanxiety, and keep myslef happy each day, so I don't mind the wait. 

I got in on a cancellation with my Oncologist the day after my PET, so we'll just head up to the big city on Monday, have the scan on Tuesday and the results on Wednesday. 

I feel FANTASTIC. I look FANTASTIC. So here's hoping I am FANTASTIC. 

You can bet this forum will be one of the first to know the results.

jen2012
Posts: 1607
Joined: Aug 2012

Fantastic  spirit and state of mind!  Good luck.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Alright! You go!! That's quite a trek and it's great that you feel so wonderful. I'd be yelling road trip every time we got in the car. It's not the ideal road trip but still time well spent together.  I used to call the shuttle at Sloan the chemo party bus=}

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Smile

Trubrit, you have the best outlook....no worries.  I am certain that your positiveness will take you far.  Have a good week....lay still for your scan....very still.....for a long time

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

i love your spirit Sue.  I like the sound of it being a "fluke" too.  Hoping that your trip to the city is safe and that you get reassuring information.

Aloha,

Kathleen

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

and best wises, Brit:)

Annabelle41415's picture
Annabelle41415
Posts: 6253
Joined: Feb 2009

Sorry that the news isn't better.  Wishing you the best for the scan and I'm glad that they finally approved it. 

Kim

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