Need advice: Stage 2 pancreatic cancer

Hi @drewgrebe and welcome to Mayo Clinic Connect. I'm tagging fellow members @susandc @susan2018 @chemobile @dakotarunner and @marvinjsturing who have experience with stage 2 or 3 pancreatic cancer. They can share the treatments they had and when, and how they're doing today.

Drewgrebe, I'm glad that you're loved one's cancer was found at an early stage, which I'm sure you know is not common with pancreatic cancer. Luckily detection is getting better as are treatment options, and there are more and more pancreatic cancer survivors to tell their stories. How was the pancreatic cancer discovered in your loved one's case? When did they have surgery? Any other treatments being considered?

@drewgrebe My husband had a Whipple procedure surgery the end of August 2019 at Mayo for malignant IPMN cyst in the head of his pancreas. He is currently receiving the recommended Folfirinox chemotherapy, every other week, 12 sessions. Going into surgery it wasn’t known to be malignant. The surgical margins were clear and no lymph were involved, however because of its size, it was Stage IIA. The oncologists call him a”rare bird” in that it was discovered so early. It was incidentally discovered because he had a scan for another condition several months prior. Anyway, only time will tell how fortunate or unfortunate he turns out to be, they only say he was fortunate to be able to have the Whipple, fortunate that he is tolerating tough chemo and fortunate that it was very early...so he has a chance. Best to you.

Hi, @drewgrebe I was diagnosed with pancreatic cancer on May 9, 2014. I had my Whipple on June 5, 2014. I had Stage 2b cancer - adenocarcinoma on the head of my pancreas with 1 out 65 lymph nodes involved. The surgeon removed most of my pancreas, my duodenum and 1/3 of my stomach. After my surgery, I had 6 months of chemo (18 infusions of gemcitabine). I've had PET scans every 6 months for 5 1/2 years. There has been no evidence of cancer in the past. My last scan was done at a different hospital and was inconclusive, so I am going back to Mayo next week for scan to see if they can get a clear picture of what is going on. I did have a very rare reaction to the chemo and developed a disease that damaged my kidneys. Doctors said this only happens to 1 out of 300,000 people. I am currently on a kidney transplant list. The thing that I deal with on a daily basis is fatigue. Other than that, I can do anything I want. I am now a Type I diabetic and take Creon with every meal to replace the enzymes that my pancreas no longer makes.

He had bladder cancer 9 years ago. In treating that they saw a spot on his pancreas. They followed once a year with mri and oct of 2019 the spot split. They had him in for surgery even without doing a biopsy. They took out tail and 2/3 of pancreas. All
Margins and lympth nodes clear. He is going through chemo 12 rounds every two weeks. It just seems like when u tell someone they have pancreatic cancer they look at you as if you do t have long for this world. Did u get that reaction?

Susan it sounds like your husband d is doing what my fiancée is as far as treatment. What did they say follow up would consist of cause there are no tumors tonwatch? They told my fiancée that he would have lab work prob every three months?

Thank you everyone this really helps me have hope. I really appreciate it.

@drewgrebe Our local oncologist says Labs, CA-19, CT scans every three months to begin. My husband is on his 8th of 12 Cycles of chemo. He has had one scan during chemo. NED. His CA-19 is 14. If it remains good, I’m not sure when they switch to every six months, etc. I’m also wondering when they remove the port.

@drewgrebe I have gotten the same reaction from others that you describe. Tell someone my husband has cancer, they express their sympathies and ask how things are going,, tell them it’s pancreatic cancer and their face falls and they have a look of sorrow come over them.

@drewgrebe I would also get that kind of reaction. I was discouraged for the first couple of years, but then I met other survivors- one a 15 year survivor and one who was a 25 year survivor. Meeting them encouraged me. My whole attitude changed. Now I thank God for every new day of life.

Adenocarcinoma is an aggressive cancer for sure. What most people don’t know is what I learned as a Mayo pancreatic surgery patient. Cysts are being found earlier because we have more scans for other purposes. When a cyst is found it can be monitored and if it grows and is pre-cancerous, removed. Additionally the treatment protocols have advanced and patients are living longer and in some cases even cancer free after surgery. Dr. Truty at Mayo shares great info about this in the online videos posted by Mayo. I share my story with people I am close to but not many others, because of the immediate assumptions. Don’t want my employer to assume I am dying soon!