Need help on this biopsy report and advice.

I'm afraid I am not the person to interpret reports. However, one thing that in hindsight I wish we had known about when they found a spot on my husband's pancreas... blood test CA19-9. Because scans showed more spots in other parts of his body (bones, lungs, lymph nodes), the pancreas connection was ignored for over 6 months and the correct treatment could have started sooner if any doctor would have suggested this blood test instead of guessing that it was a different cancer and ordering chemo and immunotherapy for the wrong cancer. An easy blood test that shows evidence/possibility/probability of pancreatic cancer. Normal is less than 35. My husband's was over 39000. So even a non medical person like myself would have recognized something was wrong with the pancreas with those numbers. Good luck to you and your friend.

https://connect.mayoclinic.org/discussion/indeterminate-mri-findings-terrified/?pg=1#chv4-comment-stream-header
Read page one or more of that post. It has some information that seems to apply to you. Best of luck to you and all those dealing with cancer.

We do realize that it would be in an early stage. She was told different things in the hospital, by doctors and nurses, with varying degrees of urgency. A couple told her that she had pancreatic cancer with certainty.

Does she need an endoscopy for a more finite diagnostic biopsy? Being told you have pancreatic cancer and to come back in three months brings on a bit of anxiety.

I am not an expert, but I do remember that thread. In it if that is the thread I remember was information about conditions that can cause what at first looks like a tumor. Either benign or cancerous. That these spots will show up from time to time with these conditions and then go away. Thus, the reason to monitor. Do some reading on that thread and reach out to some of the people who answered with a lot of good info if you need to. The thread I remember it turned out to be one of these spots.

When I was in the hospital, they would not tell me much of anything. For all I knew I could have had a gall stone causing a blockage. They did say there was something in the head of the pancreas but would not say it was a mass or tumor. I will hope that the information given to your friend about it being pancan was false. It sounds to me like this might be the case. A second opinion never hurts, and most will recommend that it be with a Mayo Clinic doctor.

Thank you for giving us your time, Happyjack. After the biopsy in the hospital, she was referred to oncology. They told her they found cancerous cells but not in any abdominal fluid.

Guess I’m extra cautious because I lost my stepdaughter in May to Pancreatic cancer. They said it was her gallbladder and she went through a surgery that was unnecessary, to remove it. She continued to deteriorate before a correct DX was found. She had to travel to a major city and University hospital where the equipment was more advanced to find her mass. She was incorrectly DX and treated over six months. That six months was critical. She did 6 months of chemo but it didn’t stop it from setting up in her liver.

It sounds a bit inconclusive, but I am not a medical professional.

What was her CA 19-9?

Hello,
I am a retired Medical Technologist with some ability to read pathology reports. It does look like the results are inconclusive. There wasn't enough of the biopsy to perform further tests that could rule out neuroendocrine tumor. The scan shows "some" irregularities that they couldn't quite classify. If it was me I would ask for further biopsy. This is my opinion only and you need to decide what you want. Waiting isn't wrong it just isn't what I would do. Hope this helps somewhat. Medicine isn't an exact science unfortunately.

I was diagnosed with PDAC at age 39 after almost 8 months of issues. Even though neuroendocrine tends to be a slower and less aggressive form of pancreatic cancer, I would absolutely push for more testing and not wait 3 months. Perhaps after they discuss her case with the tumor board, they will agree and proceed with testing. If not, I would seek second opinion or push for confirmative testing. She must advocate strongly for herself. I have learned that the hard way.

I have two suggestions:
* absolutely request blood tests for CEA and CA19-9. Any lab can do it. Shocking a doctor did not do this already
*get second opinion at high volume facility immediately. Pancan.org can guide you to places in your area. I have flown to several places for second opinions each time I am at a crossroads. Yes, neuroendocrine is slower growing but that is no reason to wait and watch. Once in your bloodstream it can crop up anywhere at any time.
I have lived this! Dx stage IV for almost 35 months(thank you Lord!).
And thank you for being a good friend.

The findings from the initial testing by EUS-FNA is suspicion of the slower growing, less aggressive pancreatic neuroendocrine tumor (PNET) based only on microscopic examination of the cellular morphology. To make a definitive diagnosis requires immunohistochemical (IHC) staining to determine what clusters of proteins are on the surface of the neoplasm. Each cell type has unique combinations of staining patters and the interpretation of which stains are positive and negative on a cell is how the definitive cell type is made. The report noted the biopsy material obtained was insufficient to use for the IHC and will need to be repeated.

For diagnosing diseases of the pancreas, it is best done at a high-volume center with a Hepatobiliary department and pancreas program. The patient should consider going to an NCI designated center of excellence or a National Neuroendocrine Foundation recommended comprehensive cancer center. These medical centers have a higher level of expertise and skills in doing an EUS, making a diagnosis and determining the most appropriate treatment.

CENTERS OF EXCELLENCE
https://www.cancer.gov/research/infrastructure/cancer-centers/find
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
https://netrf.org/