Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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.

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.

@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.

@ivy1951
You are at a crossroads. We often are with this cancer. Have you scheduled a second opinion?
As much as we may love/respect our physicians, we must always look for a second opinion.

@yellie
Thank you for your insight. We are planning to get a second opinion as well. We got one when my husband was diagnosed and the local surgeon at that time wanted to do a Whipple. The second opinion (from out of town specialist) recommended a distal pancreatectomy, so we went with that. Stage after surgery was IIB. So perhaps, here we are again. I have contacted the office of his surgeon from the distal for their advice. It's only the beginning.

I should add that it is quite rare that oncologists actually look at our films unless consulting for a second opinion.
Reviewing them with the surgeon is a great idea.

Jan 2026 Had whipple surgery in Mayo and pathology showed pancreatic cancer, stage 2B Just started my chemo treatments 2-27-26. One treatment every two weeks for 6 months is what I am currently set up for. Day one: chemo and infusion pump set up and first infusion. Day 2 wear infusion pump and bag and get on with day. Day 3 appointment at our local hospital facility to disconnect infusion pump and store till my next chemo infusion. So much information to take in and learn and is abit overwhelming. Only side effect i have is loss of appetite and low energy, but that right after whipple surgery. I have read numerous posts that after whipple, it can take alot of time for things to return to normal. Am excited to join group to get and share ideas that may help along our journey. So greatful for this group.

@gamaryanne that’s interesting as my husband’s oncologist has looked at films with each CT and MRI to better interpret his response to chemotherapy. I thought that was normal.

@beckykuh
Wanted to send encouragement to you - I had the whipple surgery in Canada in the fall of 2018. Followed by 11 sessions of chemo (couldn't finish the 12th one). I had tingling in my fingers and feet so stopped chemo. I am still here after all these years, managing my life and looking after my husband. My pancreatic cancer was Stage 3. I do have neuropathy in my feet and a lot of problems with digestion. But overall I live a pretty good life. I would like to wish you the best. Hang in there.