My CEA just came back at 447. Please Help!

[teresajj1]

I just got a call from my doctors office and my CEA is 447. Even before my tumor was removed 2 years ago my CEA was only 2.9. About 6 months ago it was 1.9 & my CT scan was clear. I go in for a CT tomorrow. Any thoughts or advice would be helpful. Is this metastic cancer? Has anyone experienced this high of a CEA???

Thank You

[Caat55]

Are they going to recheck it? Run through again? Be sure there wasn't an error?

[teresajj1]

Are they going to recheck it? Run through again? Be sure there wasn't an error?

Thank you. I definitely will.

[Rikimaroo]

Not trying to scare you but my CEA went from normal to 500. I had RC and it went to my liver and that is why it skyrocketed. Like you I was very concerned and freaked out for all the right reasons which were realized once they did the scans, ct, pet etc...and found one solitary mass in liver.

All is still treatable so don't lose hope, but its a hard road to travel, but you will make it through it.

why did you do this: 7/2016 Quit chemo after 5 rounds & had port removed

You need to listen to your doctors and do everything they say. I know it sucks and at times I want to tell my oncologist to FK off and stop drugging me up, but there doing it to help. It's rough. There are many other options then flat out stopping, if Oxi is bad, do Irinotocen. You have to talk to your docs, I understand side effects are horrible and you just want to quit, I do, trust me. But you gotta roll through it, your young.


Rikimaroo

[teresajj1]

Not trying to scare you but my CEA went from normal to 500. I had RC and it went to my liver and that is why it skyrocketed. Like you I was very concerned and freaked out for all the right reasons which were realized once they did the scans, ct, pet etc...and found one solitary mass in liver.

All is still treatable so don't lose hope, but its a hard road to travel, but you will make it through it.

why did you do this: 7/2016 Quit chemo after 5 rounds & had port removed

You need to listen to your doctors and do everything they say. I know it sucks and at times I want to tell my oncologist to FK off and stop drugging me up, but there doing it to help. It's rough. There are many other options then flat out stopping, if Oxi is bad, do Irinotocen. You have to talk to your docs, I understand side effects are horrible and you just want to quit, I do, trust me. But you gotta roll through it, your young.


Rikimaroo

Rikimaroo,

You are right. I know what's coming tomorrow. I was so depressed & sick & tired the first time I couldn't find the will to continue. Maybe that's why this is happening now, maybe not. I remember being at a chemo session back then & there was a sweet 50 something yr old woman that always would sit next to me to chat and give me encouragement. She was a stage IV liver and was going to be on chemo for the rest of her life (however long that was). I asked her one day, "how can you continue to put this poison on your body everyday and why do you do it?" She said, "Teresa, if taking these nasty meds will give me even 1 more day with my daughter and granddaughter, I am going to continue to do it".

I didn't trust the doctors, I didn't trust their treatments. It stems from being undiagnosed for over a year of seeing several doctors & having countless tests done just to be told I was "fine" and meant to feel as if I was crazy. Even when I was crying and telling them I was in so much pain & felt like I was dying. Luckily the 6th doc I saw did a colonoscopy immediately.

I hope I can fight it all the way this time if I'm even given the option. PS. My husband said to tell you thank you & he agrees with you 100%.

[stu]

Your husband loves you very much . Hang on in there . My mum did most of her hard chemo years in her late sixties . Some of the visual images of her at that time will stay with me forever . However she had a life to be living and all these years later she is out living , enjoying herself and making every moment count .
I am hoping it is a complete admin error , but short of that you will come through this.
Take care,
Stu

[stu]

Had a wee giggle at the 50 something . I was in my late 30’s when my mum was initially diagnosed and guess what age awaits me next year!!!
That’s the advances of medicine in a stage 4 setting .
Take care,

Stu

[henry123]

Teresa,
My cea levels too went crazy after completing Chemo. Unfortunately the beast had come back with a vengeance. And it didn't respond to any line of the chemos. Luckily, immunotherapy seems to have worked out fine.

You have written colon gene.
What do you mean by that?
Is it Lynch syndrome.
Also what's your msi status? If it is high, then it may open immunotherapies option.

Best wishes.

[teresajj1]

Teresa,
My cea levels too went crazy after completing Chemo. Unfortunately the beast had come back with a vengeance. And it didn't respond to any line of the chemos. Luckily, immunotherapy seems to have worked out fine.

You have written colon gene.
What do you mean by that?
Is it Lynch syndrome.
Also what's your msi status? If it is high, then it may open immunotherapies option.

Best wishes.

I tested positive for the MUYTH gene which causes polyps and increased risk for Colon, Breast, and other cancers. Not sure what msi is or if it's something I've been tested for.