Pancreatic Cancer Group: Introduce yourself and connect with others

I was diagnosed with pancreatic cancer in late April, 2007. My diagnosis came as result of awakening one morning with jaundiced skin. My wife and daughter insisted that I see my primary physician to determine cause. He initially suspected gall bladder, but did not feel right about that and asked me to enter hospital for more extensive tests. The tests confirmed that I had pancreatic cancer. A local surgeon stated the cancer was on an artery and could not be surgically removed. He estimated the cancer to be early stage 3. What he and the local oncologist failed to tell me was that there are a select few surgeons in this country who can sometimes perform this surgery, depending upon the exact nature of the arterial location. In addition, the next morning, while still in hospital, an oncologist contacted by my primary physician told me my cancer was "the worst of the worst and there was no cure". He added that I was "as old as dirt anyway". I was 82 at the time, but I had and still have three living siblings older than me and my dad lived to 97. My wife fired him that day.
I requested to start a chemotherapy regimen and I spent many hours researching on my computer and found that Mayo clinic not only had several surgeons qualified to perform arterial resection to remove the cancer, but they even showed a diagram of it on their website. I immediately contacted their Jacksonville, Florida clinic, which is about a seven hour drive from my home in south Alabama.
I requested and was granted an appointment with one of two surgeons at that clinic who is skilled in whipple procedures involving arterial resection. After MRI, CT scan and other testing, he advised I was a candidate for surgery. He suggested I complete six chemo treatments prior to surgery. When I returned for surgery, the chemo had broken up the arterial involvement (which the surgeon and oncologist both stated was very rare) and arterial resection was not necessary, He did perform the whipple procedure, and I tested cancer free in all quarterly check-ups during the first year following surgery. At my fifth check up a small spot appeared at the site of the surgery on the pancreas, but the surgeon and oncologist do not believe it is cancer, I am scheduled for follow up MRI on the 20th of December to see what further action, if any, needs to be taken,
I am urging everyone that I come into contact with to seek a second opinion from one of the leading cancer treatment centers if a local doctor diagnoses them as having cancer; especially pancreatic. I believe I read in Mayo literature that something like 80+ percent of patients who come to them for second opinion are found to have been misdiagnosed by their local doctor. After my surgery, I learned that there are several cancer clinics who have surgeons qualified to perform arterial resection with whipple surgery if needed. What upsets me most about my cancer other than the cancer itself is that the local oncologist admitted to me after my surgery that he was aware that there were surgeons in other states qualified to perform arterial resection surgery as part of the whipple surgery but neither he nor any of the other local doctors involved in my treatment told me about them. If I had not sought a second opinion on my own, I would not be typing this message today.

always check mayo!  i was told by both clinics in town that my tia's,
vertigo, et al., were anxiety.  it was an ulcerated carotid that was
rolling up spitballs and shooting  them into my brain. mayo operated at
7pm and i went home the next morning with every single symptom gone.

"May this be the worst day of your life".
Old Irish blessing.

Hello everyone. My husband was diagnosed In July of 2018 with cancer in the pancreas tail with metastases to the liver in addition to veins around the spleen. We came to Mayo hoping it might be operable, or failing that, eligible for a clinical trial. The trial drug, along with Abraxane and Gemzar stopped working after 9 months. Then he began a regimen with 5 FU. Now I am afraid resistance is again setting in. Even though the last scan did not show progression, his CA 19-9 has begun to rise and his ascites are accumulating at an ever faster rate. He has to have them drained every 10-14 days. The last progress notes mentioned speaking to us about a biopsy on his next visit. I am hoping for better news, but fearing the worst. Stories of hope are most welcome!

Hi @julie2018, welcome to Connect. You're not alone. Members like @chemobile @cindee60 @marvinjsturing @nogginquest and @dianamiracle have stories of hope to share. Here are a few:
- Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/
- Celebrating Life after Pancreatic Cancer! https://connect.mayoclinic.org/discussion/celebrating-life-after-pancreatic-cancer/

Julie, is your husband's ascites being managed closer to home? When do you travel to Mayo again?

Thank you, Colleen. I have some happy reading ahead of me. Yes, we’re managing the ascites locally. In fact, my husband has a tapping scheduled for tomorrow afternoon with his chemo pump still attached! in the meantime, he is so looking forward to meeting our first granddaughter on Christmas Eve. Life is full of blessings!

My name is Becky. I was diagnosed in August of 2018. I had chemo, radiation and then the Whipple Surgery. I later had another chemo after surgery. Cancer free. I am doing pretty well.

@beckyvolk
So glad you are doing well. How were you diagnosed with cancer?

Welcome to Mayo Clinic Connect, @beckyvolk. Am I correct in understanding your had chemo both before and after surgery?

Hi @beckyvolk,

I'm also glad to hear that you are doing well. Were there any symptoms that led to your diagnosis of pancreatic cancer?

My name is Carrie. My husband was diagnosed with pancreatic cancer November of 2017. He underwent chemotherapy and radiation for 9 months. Had a Whipple in November 2018. That sequence of chemo/radiation first definitely saved my husband’s life. He had 9 months after the Whipple of no chemo. He did develop a blockage in area of his bile duct. He now has a stent that needs to be replaced every 3 months. After one of the procedures changing out the stent he developed an infection. After further testing the cancer has now metastasized to his lungs. Very small nodules but back on chemo. We will beat this!!!!