Pancreatic Cancer Group: Introduce yourself and connect with others

@ivy1951 Hello, Have felt similar confusion and concern with diagnostic test results and the worry of returning cancer from abnormal CT impressions from radiology that oncologist interpret differently. What stage did your husband’s Oncologist give after surgery? Were any lymph nodes positive from his surgery? From all the tests my husband has had it seems the oncologist and surgeon opinion is what we follow as many factors go in to how the tests are interpreted. Keep in mind seeking a second opinion can be helpful if you have concerns. Don’t hesitate to reach back out to your doctors if you have more questions, that is what they’re there for. We are lucky our son goes to visits with us at times and takes notes. We also bring a list of concerns and questions, which helps keep us on track. Keep in mind the oncologist have the “full” picture with their experience to interpret results and radiologist only “interpret” what they think they see with in the image and possibly prior images they also seem to read and interpret those images with a worst case possible and the test themselves also have limitations. I hope you can get more information and answers soon. Sending you positive thoughts and peace.

My husband was diagnosed with pancreatic cancer quite by accident in November 2024. The first sign of anything amiss was a severe spike in his A1C in October, along with a sudden diabetes diagnosis. He'd been losing weight without even trying, as well. In hindsight his doctors missed that marker of pancreatic cancer. He had an annual follow-up CT for a kidney cyst (benign) and the radiologist found the pancreas tumor(s). He was referred for an EUS biopsy (PET, other tests) that confirmed the cancer was active. He had 8 rounds of chemo, then surgery, then 4 more chemo. Scans after that showed no recurrence, and CA19-9 (normal scale 0-37) score dropped to 4.86. That was August 2025. November scan was clear, but CA19-9 had gone up to 21.56. Dr was unconcerned. February scan showed some new lung nodules (with a couple that had grown since the November scan). What? Radiology report said 'metastatic disease'. We brought this up to the dr but she didn't think it was worrisome. I (wife) pushed further until dr scheduled a PET scan. Pet showed lymph node activity in addition to small lung node. Latest CA19-9 is 37.67. Clearly something is lurking. Stay tuned. I am already exhausted and my husband is very concerned.

Carol S,
Surgery will be in two months for distal pancreatectomy by Dr. Schauffley. What were your first and second weeks after surgery like? I’m 88 and good health and on Elliquis.

I'm the wife of a Pancreatic Cancer patient. ( 50) Years. He was 16& I was 15..indeed way to young yet our love has stayed strong. It's been so hard these last 15 months. Took 9 months to finally get a diagnosis. 2 stents placed for liver function...2 stays in the hospital. A very scary Sepsis illness. He's a strong man yet after the strongest form Of chemo he says he's tired of it all. We meet with surgeon this Wed to discuss possible Whipple. At first he wasn't a candidate. The tomor at the head has shrunk. Yet many veins are so close to the tumor. He's that guy that just keeps going. Doesn't involve himself much. Works part time to stay active. I do mostly all of the behind the scenes...calls. & appointments. Meds ECT. So caregiver. I'm thankful I found this group so ty all. I do need any thought from any one who's had the Whipple please. Did you struggle deciding if you wanted to move forward? Husband is questioning it. Thinks his whole quality of life will be so much different then what he can handle. He's struggled so much with eating these last 12 months. Was 220 at 6 foot. Down to 147. Now eating has improved last few months. Up to 168. He thinks he will never be able to return to somewhat of a pleasant way of eating. Breaks my heart. Again ty for listening.

Thank you, for my first treatment I had mild mouth sores so I want to stay ahead of it for future treatments

@kfcrain FU-5 is Fluorouracil. It was part of the Folfirinox chemo mixture I was on and caused very bad mouth sores. My onc. prescribed something that is called "Magic Mouthwash". I was living on chicken noodle soup and losing quite a bit of weight and this stuff did help. You'll have to get it from a compounding pharmacy and it's perishable and must be kept in the 'fridge. If you get the mouth sores, I hope this helps.

Hi - I was diagnosed due to an incidental CT chest exam on December 9th. It was a tail cancer. Adenocarcinoma. 4 cm. Two weeks later I had surgery to remove the tumor and my spleen. Robotic surgery. The CT abdomen exam before surgery showed no spread. 21 lymph nodes were tested post surgery with no cancer indicated. My CT 19-9 test pre surgery was 232, post surgery (two weeks after) it was 7.7. I was stage 1B. Post surgery recovery was good. All blood work normal. I just started chemo (FU-5 and others). Had first treatment on Feb 3, got Covid last week so 2nd one delayed until next week, then will be every two weeks after. 12 treatments in six months. Generally did well with first chemo. This week, back walking/working out 10,000 steps a day as I did pre cancer.

@azsunshine7
No. Scans in early March. I'll post any significant results.

@joealp1

Thank you for sharing your experience here. Did you have your scans done yet?

@joealp1 That is very good news that it can be utilized near the vessels since so many have vessel involvement by the time of diagnosis and there aren’t very few options. I am cheering for your continued progress. 🙂