Test result CEA, CA 19-9 and AFP

Welcome to Mayo Clinic Connect, @vickysampson1989 . Waiting is brutal when you are concerned about getting bad news on the other end.

You sound worried due to the borderline/abnormal results. I think this is natural to be concerned and to have some fear of cancer, as we as humans have seen so many people struggle with cancer. You also deserve some solid answers and perspective on your results from a medical professional. Lingering question marks where cancer is involved are painful and concerning.

I had the personal experience of having abnormal colonoscopy results a couple years back. Of course, my colonoscopy was on a Friday, so I got the radiologic results and pathology results three days before I got to speak to my doctor. The results sounded alarming and like I might well have cancer, but were really written in language for fellow radiologists and pathologists.

My husband, who is a really smart tech guy, could not totally understand the bottom line of my results either. We thought they might be saying I had neuroendocrine cancer or a marker for it. But we just weren't sure.

It was pretty tortuous waiting for the doctor over the weekend, but I knew that input from anyone else might mean they'd know my results and medical history less well and thus be less qualified to give me the best information.

The bottom line for me was that I did have neuroendocrine cancer, but it was low risk. Many, many tests later, the doctors determined that I no longer had any cancer left in my body.

I'd like to introduce you to @tomrennie, who may have some thoughts for you as you wait with high concern about your liver test results.

Have you gotten to share any of this with a friend or family member, vickysampson1989? If so, what did they say?

@lisalucier @vickysampson1989

Hi Vicky. I understand your concern. Anything the says mass or abnormal has scared the crap out of me. Please take a deep breath, and let's talk through a few things ok?

A little about me. I was diagnosed with pancreatic cancer in 8/22. I have Neuroendocrine Tumors. It has primarily spread to my liver and bones. My liver has been a big concern since diagnosis. I recently had a bunch of tests, endoscopies and scans ordered by my oncologist and hepatologist. Like you, I got the results before talking with the doctors. It is hard not to peek at them, but it frequently causes tremendous anxiety or scanxiety. I still get it every time. I don't know anyone that doesn't. Allow yourself to be terrified, but please don't panic. Diagnosing cancer isn't an event. It is a process. It unfortunately takes a little time. Let's try to make that time as short as possible for you.

I had one CA 19-9 test in 8/22. I haven't had one since. It was a small tool in the toolbox for diagnosis only. My oncologist doesn't feel any further CA 19-9 tests are necessary at this time. For my AFP, anything under 8.4 is considered normal at Mayo according to my tests last week. Personally, I would agree that yours is elevated and worthy of further discussion with your doctor. My main concern is your lesion size. A 4.3cm x 3.9cm lesion is a good sized lesion. I know because my biggest liver lesion, I have several of them, was measured at 5.7cm last week. It used to be over 8cm. Though most liver lesions are benign, I too would be very concerned. Do you know what type of CT was done or if a contrast was used?

What is most important, now that you know what you know, is your next doctor call. Let's try to get you as prepared as possible for that. My first question would be is the MRI with contrast? If so, what type? There are specific contrasts used to see HCC better. I would want to make sure one of those contrasts is used. What is the game plan moving forward to determine is the lesion is cancer or not? What future tests or scans are being done?

You said that you do a lot of research. That is awesome. So do I. For me, research and preparation for discussions with doctors are critically important to get the most out of those conversations. I would suggest that you limit your research to reputable sources. I always start with mayoclinic.org. I get treated there, so I trust their information. Below is a link on HCC. Please review it, and let me know what three questions you would ask the doctor? I am sure you will have a million questions, as I did, so let's start with three and build from there. OK?
https://www.mayoclinic.org/diseases-conditions/hepatocellular-carcinoma/diagnosis-treatment/drc-20588954

@tomrennie
Thanks for sharing your story.
I have patient portal that I have a note from doctor :" AFP is slightly elevated. Tell the patient that these are somewhat nonspecific findings and we will get more information with the MRI. And will contact her with the results as soon as I receive these."
She wrote that down at my record and I call in right away. I spoke to the staff and she said :" I hate to say this but Right now there are no concern until we have the result from MRI "
My eyes tearing and I asked: " is meaning I have cancer?"
She said:" you at this point is not a cancer"
But anytime I looked back my doctor note about " non-specific finding", that just scare of me.
I have MRI with and without contrast abdominal belly on March 18.
I don't know should I stay calm after hear from staff today or still panic.

@vickysampson1989 Please don't panic. I believe that the doctor really doesn't know. To my knowledge, an MRI with contrast is the best way to see a HCC. Though difficult, you can't let the fear of the unknown control you. Like I mentioned, it is a process. You have to commit to every step of the process. That is all that you can control. You have already done a great job. You did your home work. You are here. You asked informed questions. You are preparing for the next steps. Don't beat yourself up. The process does a pretty good job of that all by itself ok?

You are the boss of your body. Moving forward, I suggest that you prepare interview questions for the care team that you've hired to diagnose you. Focus on that. Folks here can help. We've been there. Do you think that you can do that long enough to at least take a few deep breaths?

@tomrennie
Thank you so much,
I'm trying to not to panic that easy to say but hard to do.
I'm praying everyday that I would be go throught and come back to my normal life.
Thanks so much with big hug

@vickysampson1989 You are welcome. Nearly impossible to do. All that you can do is try your best. Let me know, if there is anything else that I can do to help.

@vickysampson1989 How are you holding up?

@tomrennie
Yes. I just done MRI at March 16 , waiting for 3-5 days for result
I done colonoscopy last week, and doctor said my colon was clear, no polyps just a little Hemorroid.
Thanks so much, with big hug

@vickysampson1989 It is great that the MRI is done. Back to waiting on results? I am optimistic for you. Please let me know when you get them. Ok?

@tomrennie
I have MRI report today :
There are 2 hepatic hemangiomas. ( 4,3cm and 0.9cm ) (Benign) Non flowing up