Is high CA. 19.9 a good indicator of malignancy?

Hello @lidiana and welcome to the Neuroendocrine discussion on Mayo Connect. From reading your post, you do have complicated health issues. As you know, Mayo Connect is not a place to get a medical diagnosis or to interpret medical results. It is a patient-to-patient support network, and we share our experiences and offer support and encouragement.

You asked the question, "Can tumors be so small not catch by CTs and not seen on scopes? " Neuroendocrine tumors (NETs) can be very small and may not be picked up on traditional CT scans. Here is some information on the type of scan that is good at picking up NETs.
--69ga Dotatate Positron Emission Tomography Pet Now at Mayo Clinic
–68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

Have you had one of these scans? What are your oncologists telling you about your lab and scan results?

Hello 👋🏻 I had a regular PET scan March that showed just physical activity in all the small and large intestines and some increased uptake in lumbar area. Now my September Bone scan showed patchy lesions that they said it’s just degenerative process and not malignancy. But my January bone scan was completely normal no areas were identified or even mentioned. I have had so much radiation from ER visits because of extreme abdominal pain and my constant high d dimers and they make me sign or aware I’m leaving against “medical advice” if I don’t get the CTs. I haven’t have any luck connecting with an oncologist that is willing to help me by investing a little deeper. I’m basically begging for biopsies but I had been dismissed multiple times. I also wanted to address the possibility of MCAS with this tissue analysis and could also help to an analyze the etiology of my POTS or Dysautonomia symptoms by fiber or tissue pathology analysis. The multiple small cysts had never been addressed and they keep appearing in weird spots like spine neural foramina and new on ovary. I’m feel really sick and exhausted. I’m trying to schedule with a new oncologist out of Mayo. But if this team identifies it I’m debating if I should go back to Mayo to further treatment since they are research based.
Here’s the latest bone scan and my first gallium scan at PR Children’s Hospital stating multiple joints inflammation processes.

I like the information provided by the website Lab Tests Online (https://labtestsonline.org/) by the American Association for Clinical Chemistry (AACC). The information is trustworthy and easy to understand.

Here's the page about Cancer Antigen 19-9 (CA 19-9) https://labtestsonline.org/tests/cancer-antigen-19-9
CA 19-9 is primarily used to monitor response to pancreatic cancer treatment and to watch for recurrence. In the section called "What does the test result mean?" it states:
"Levels of CA 19-9 that are initially high and then fall over time may indicate that the treatment is working and/or that the cancer was removed successfully during surgery. Levels that remain high or rise over time may indicate that treatment is not working and/or that the cancer is recurring."

@lidiana, why was the CA 19-9 test ordered for you? What were they trying to confirm or rule out?

I had it ordered after multiple ER visits, oily diarrhea, yellow diarrhea, green diarrhea and ultimately hemorrhagic “gastritis” that couldn’t be explained it was decided to do chromogranin A and CA 19.9. with the local oncologist. The PET scan done at this local oncology center showed “physiological activity” in all the small and large intestines and some areas of uptake on my lumbar spine and supposed fibroids. No biopsies have been done to rule out anything. The HIDA was never done on me in non of the local or at Mayo. My last Dotatate was 2019. Locals just keep doing CTs in the ER because of my severe abdominal pain and high D dimers. My last admission the GI doctor told me to go to Mayo and closed the door mid sentence on me. I consulted a doctor at Mayo at the beginning of this but no tumor markers or other studies were ordered to investigate further. I’m trying to get to see the GI at Mayo again very hard with all that’s happening but I managed to start in Moffitt. I’m also waiting on a vascular surgeon to review my images since there’s also other commorbidities with hypermobile connective tissue disorders that maybe related to my symptoms. I’m still in a lot pain, pale weak, can’t walk, blood sugar is odd sometimes, barely eat to not trigger pain, need iron IV (can’t get here for some reason I can get nobody to reason with me so I use the best next thing that doesn’t trigger my GI issues oral pill for now until my mom sent me Maltaglobin), my abdomen has been stiff or bloated for the longest and my skin around eyes are yellow. Regardless, I’m still hopeful. Thank you so much for the information! 🙏🏻 Blessings and healing for everyone ❤️

ct and mri scans need to be done with contrast. Mine does not show without contrast

Is HIDA scan a good screening?

Hello 👋🏻 @hopeful33250
I just got my results from my tumor markers and this is been the pattern. I’m feeling so ill (see my discussions). Cysts all over even on pineal glad, bone degenerative processes, fibroid, dilated small bowels, “physiological uptake” on all the bowels…I just honestly don’t know what else to do. I don’t think it’s HSD and POTS anymore.

Any feedback would be greatly appreciated 🙏🏻 blessings for healing always for everyone 🌼🤲🏻