Pancreatic Cancer Group: Introduce yourself and connect with others

@mcoplien My husband was finally diagnosed in April 2024 after 6 Months of testing and elevated Ca19-9 . His only symptoms were weight loss and loss of appetite. Doctor did colonoscopy, endoscopy, then ordered a Chest X-Ray that showed some nodules in his Chest.
He recommended we see an Oncologist. We went to University of Pennsylvania where they did CT Scans and other tests. CA19-9 kept going up but they said all they could find was a lot of inflammation and the oncologist said that she really did not think it was Cancer, she thought it was pancreatitis. I was feeling so much anxiety because he had never had any pain but the CA19-9 kept going up. I know that does not always mean cancer but he was continuing to lose weight and he had no appetite.
My primary care doctor told me to take him to Jefferson for a second appointment. We saw a surgeon who has done thousands of wipple procedures. He gave us the option of going into the Pancreas to see what was going on. He had a tumor in the tail and the body of the pancreas so he removed the Tail and the Body of the Pancreas and also the Spleen and twenty of the lymph nodes in the area. Pancreatic Cancer was in 16 of the 20 lymph nodes and unfortunately they did not get clear margins when they removed the body and the tail.
He had many, many setbacks after the surgery so t took 6 months for them to go back in to biopsy the lung nodule. By this time, there were several nodules in his lungs but the biopsy was positive for PanCan. He was stage 4 before they even did the surgery but first oncologist
kept telling us she was sure it was pancreatitis. The tumor was hidden because of all of the inflammation.

Please keep pushing for answers. Doctors are Human and can make mistakes. Even the Surgeon who did the Surgery was very surprised by what he found because he looked at all of the test results that were previously done and also ordered some of his own. He could not see the tumor and neither did any of the radiologists. We were lucky that he agreed to go in and look . Pancreatic Cancer can be very hard to diagnose and you need to look at other things that you know are not normal and make sure the Doctors know about it. My husband had never had a lack of appetite and could always eat. He was a big man and had lost 30 lbs. . I just knew that something was wrong so I kept pushing. He is now down 60 lbs but still surviving !
He has never had any treatment at all. He has been on Palliative Care since he was diagnosed.

@dianegil
Hi, My husband Mike was diagnosed in August of 2023. Tumor found incidentally, it was 4 cm in the tail of the pancreas. He had 6 months of Folfirinox followed by removal of half his pancreas in 2/24 and his spleen, 26 lymphnodes removed, all clear. For a year there was no sign of return of the cancer. In Feb 2025 he started to have elevated CA 19-9, every 3 months they increase.. 186 - 386 -880 and now this week 4200. The oncologist has been alternating with PET scans and CT scans. He did same he would never treat with Chemo for just an elevated CA 19-9. Yesterday he changed his tune. Also the PET scan now shows something hot on his stomach... in could be nothing but it could be metastatic disease. He offered Mike - Chemo OR Endoscopy to assess stomach OR wait. We decided to opt for the Endoscopy with ultrasound. They will biopsy anything they find. Here is hoping it is not new cancer. Mike's doctor thought it was very strange for him to have elevated CA 19-9 without any other sign of disease.

I had a biopsy on a blocked bile duct which came back Pancreatic Cancer on October 14, 2025. I have since had 2 more CAT scans to see the size of my tumor. I had a PET scan on October 17 showing that my tumor is 1.0 cm, is locked in the head of my pancreas and has not spread. At this point, I am assuming my Pancreatic cancer has been found quite early in the process.

Jerry

Hi @tomrennie pancreatic acinar cell carcinoma.

@lucanus Hi and welcome to Mayo Connect. What is PDCC?

I was diagnosed with PACC in January and had a distal pancreotomy and splenectomy in February.In April metastases appeared in my liver. Folfirinox failed but GemCis was successful and I'm still on this. I am looking towards Rubraca next so would like contact with someone on similar path. BTW, the drug is USD4000 a month(!) so any ideas about how I can source this more would interest me. An Indian company makes a generic version but won't divulge the its efficacy compared with the original.

Hello - I have been following this site since around April 2023. My husband was diagnosed then with 1A PC. Confined to pancreas - 2 cmm tumor. He went through 5 months of FOLFIRINOX and then had the Whipple in October 2023. Margins came back clear with a NCR to chemo. We have been sailing for 2 years with clear scans. Last week we went in and he had what appeared to be clear scans but his CA-19 test came back very high. This blood test for him has NEVER been elevated, even when he started out with PC. Our oncologist is ordering new PET Scan to look for early reoccurrence. The only thing that looked suspicious was a lung nodule had increased by 1 cmm from scans 6 months ago. Has anyone had any experience with this? Looking for any feedback.

@dyas
I am a romantic. All well and good for me but far more is needed. So I asked Sally. Sally felt VALIDATED. The doctor and Research Study Coordinator confirmed Sal should be asking the questions she had and she should be given answers.

I'm sorry your cancer advance to stage 4. It's a terrible disease. Wish you the best with treatment.

@jim1234 I agree as I started at stage 1a and now stage 4 due to mets to Omentum. Just want time. So sad for all of us with pancreatic cancer.