Weird Liver Stuff and Minor CEA Question = Panic

TheLadySkye · July 2017

Panic for me anyway. Not sure my doctors are worried but I am.

I had my 3 year CT scan in June, where a 9 mm hypervascular lesion was noted which could be a hemangioma, but they couldn't rule out metastasis. My onc sent me for an MRI which was SUPPOSED to give us a definitive answer, but did not. Apparently the lesion is shadowed by the diaphragm and the radiologist couldn't make a definite identification. Repeating the MRI in 3 months and I guess I just get to worry until then

At the same time, my CEA which has always been listed at <0.5 is now at 1. I get it, still within the normal range. And I feel crazy to worry about it. And yet I am. Also, the lab report said it was using a new reference range (0-5), but I'm not sure that makes a difference.

I think I'm going a little crazy with lack of answers, so your thoughts and input are much appreciated. Thank you!

Annabelle41415 · July 2017

Worry

I'm definitely a worrier as well. Can't blame you for wanting an answer now so I'm wondering if there isn't an ultra sound they can do on the area of concern. Usually that is non evasive and can take a good look at things that are in the area. I'd ask to have that done instead of waiting for 3 months. To you it is an eternity to them (the doctor) it is nothing. Ask them if it was you in this situation could you just sit back and wait when you worry constantly. Worrying isn't going to help your health either. Try to ask for some definite answers now. My recent situation with my breast was one of those situations and waiting 6 months for an answer wasn't going to happen. I'm also one that can't wait.

Wishing you good outcomes. Kim

Trubrit · July 2017

Welcome back, but don't stay

OK, I say that in the nicest way. Its good to see your name pop up, but not good to hear of your concerns.

You are not at all crazy. Waiting is bad when you don't know what is happening.

As for the new CEA number. I hear there are two different tests, one tests higher than the other There's a thread about it on the forum, but how knows where). I too had CEA results at 0.5, and when I changed to a different lab, who used the second test, my CEA jumped up to 0.1, and yes, I freaked out, until I learned that it was a different test. So I'm betting that its the same for you.

Good luck and keep us posted.

Tru

tanstaafl · July 2017

We can't depend on scans

We can't depend on scans but expanded bloodwork has been very useful for us. Partly because there have been antiflammatories from IV vitamin C and supplements to celecoxib, along with steady chemo dosing, we see pretty smooth and representative blood data.

Although I would always track CEA even if it was originally low, to me, low CEA means other markers should be monitored. Several people here were not (initially) CEA reactive but had elevated CA199 or changes that were more useful than CEA for them. To me, CA199 values above the low 20s can be worth following long term for CRC patients, even if they are noisy. Other common, non specific markers that often represent other things in non cancer patients but still add tracking value include: ALP, LDH, monocytes, platelet:lymphocytes, ESR, d-dimer (usually used for embolisms). Expanded data sets analyzed together give a much better picture than CEA alone.

TheLadySkye · July 2017

Trubrit said:
Welcome back, but don't stay
OK, I say that in the nicest way. Its good to see your name pop up, but not good to hear of your concerns.

You are not at all crazy. Waiting is bad when you don't know what is happening.

As for the new CEA number. I hear there are two different tests, one tests higher than the other There's a thread about it on the forum, but how knows where). I too had CEA results at 0.5, and when I changed to a different lab, who used the second test, my CEA jumped up to 0.1, and yes, I freaked out, until I learned that it was a different test. So I'm betting that its the same for you.

Good luck and keep us posted.

Tru

Thanks, Tru. I actually lurk

Thanks, Tru. I actually lurk here still, but I'm ashamed to admit I got a little overwhelmed. The loss of several of our friends hit me really hard, and I've also been dealing with some upheaval in my personal life. I just seem to have lost my voice and wondered what I could really offer anyone here. But I am always thinking of and praying for the folks here, and never really left. Just...quiet.

TheLadySkye · July 2017

Trubrit said:
Welcome back, but don't stay
OK, I say that in the nicest way. Its good to see your name pop up, but not good to hear of your concerns.

You are not at all crazy. Waiting is bad when you don't know what is happening.

As for the new CEA number. I hear there are two different tests, one tests higher than the other There's a thread about it on the forum, but how knows where). I too had CEA results at 0.5, and when I changed to a different lab, who used the second test, my CEA jumped up to 0.1, and yes, I freaked out, until I learned that it was a different test. So I'm betting that its the same for you.

Good luck and keep us posted.

Tru

Also, thank you for the info

Also, thank you for the info on the different tests. I'm not sure if the test is different because my lab report only says that a new reference range is listed. Way to be vague!

Trubrit · July 2017

TheLadySkye said:
Thanks, Tru. I actually lurk
Thanks, Tru. I actually lurk here still, but I'm ashamed to admit I got a little overwhelmed. The loss of several of our friends hit me really hard, and I've also been dealing with some upheaval in my personal life. I just seem to have lost my voice and wondered what I could really offer anyone here. But I am always thinking of and praying for the folks here, and never really left. Just...quiet.

Hugs!

Don't be ashamed or apologetic. Being on this forum can be very hard, although the forum is different now than when we both entered. We lost so many forum friends, sometimes three in a week, and always several in one month. That was so hard, and many members stepped away, understandably so!

Ah, all of those active, influential forum members dying and here we are, surviving. Sometimes we need to withdraw and take care of ourselves.

The forum is here for you to come and go as you please. We are here for you, whenever, and I know that you will be here for others, when the time is right.

I am sorry you have gone through rough times on top of dealing with the Cancer. Right now I am facing the prospect of being uninsured, as my husband is leaving his job. Our house is on the market, and we are downsizing from an already small home. Life really can be overwhelming, and we HAVE to take time for ourselves.

I do so hope that all continues to be well. I have been told that Hemangioma's are very common, so lets go for that. And like I said, the CEA is probably becuase the testing is different.

Cyber hugs!

Tru

TheLadySkye · July 2017

Annabelle41415 said:
Worry
I'm definitely a worrier as well. Can't blame you for wanting an answer now so I'm wondering if there isn't an ultra sound they can do on the area of concern. Usually that is non evasive and can take a good look at things that are in the area. I'd ask to have that done instead of waiting for 3 months. To you it is an eternity to them (the doctor) it is nothing. Ask them if it was you in this situation could you just sit back and wait when you worry constantly. Worrying isn't going to help your health either. Try to ask for some definite answers now. My recent situation with my breast was one of those situations and waiting 6 months for an answer wasn't going to happen. I'm also one that can't wait.

Wishing you good outcomes. Kim

Thank you for the suggestion.

Thank you for the suggestion. Unfortunately given the small size, my onc didn't feel that additional testing would offer further answers yet. It's scary and frustrating. I know surgery is no small thing, but part of me just wants them to pop the hood and have a look.

TheLadySkye · July 2017

tanstaafl said:
We can't depend on scans
We can't depend on scans but expanded bloodwork has been very useful for us. Partly because there have been antiflammatories from IV vitamin C and supplements to celecoxib, along with steady chemo dosing, we see pretty smooth and representative blood data.

Although I would always track CEA even if it was originally low, to me, low CEA means other markers should be monitored. Several people here were not (initially) CEA reactive but had elevated CA199 or changes that were more useful than CEA for them. To me, CA199 values above the low 20s can be worth following long term for CRC patients, even if they are noisy. Other common, non specific markers that often represent other things in non cancer patients but still add tracking value include: ALP, LDH, monocytes, platelet:lymphocytes, ESR, d-dimer (usually used for embolisms). Expanded data sets analyzed together give a much better picture than CEA alone.

My other labs have been fine

My other labs have been fine music chemotherapy-induced diabetes (the gift that keeps on giving) and a slightly elevated bilirubin (though mine has always run A tad high). They ran a CA19 after my surgery, but not since because they decided it wasn't going to be a useful marker for me. I can and will certainly revisit the question at my next appointment.

TheLadySkye · July 2017

Trubrit said:
Hugs!
Don't be ashamed or apologetic. Being on this forum can be very hard, although the forum is different now than when we both entered. We lost so many forum friends, sometimes three in a week, and always several in one month. That was so hard, and many members stepped away, understandably so!

Ah, all of those active, influential forum members dying and here we are, surviving. Sometimes we need to withdraw and take care of ourselves.

The forum is here for you to come and go as you please. We are here for you, whenever, and I know that you will be here for others, when the time is right.

I am sorry you have gone through rough times on top of dealing with the Cancer. Right now I am facing the prospect of being uninsured, as my husband is leaving his job. Our house is on the market, and we are downsizing from an already small home. Life really can be overwhelming, and we HAVE to take time for ourselves.

I do so hope that all continues to be well. I have been told that Hemangioma's are very common, so lets go for that. And like I said, the CEA is probably becuase the testing is different.

Cyber hugs!

Tru

Thank you. You all were such

Thank you. You all were such an incredible help and support during the hardest part of this journey. I am more grateful than I can say, and I always wanted to help people too and let them know they weren't alone and to share my experience in ways that might help. I feel like I don't have a clue what normal is anymore, new or otherwise.

Weird Liver Stuff and Minor CEA Question = Panic

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