My episode with my pancreas started after I had the hernia surgery in 2003. I started having more pain in that area and returned to my surgeon in October, 2004 because of that. He didn't find anything during a physical exam and sent me for a CT scan. When I went back to him a few weeks later, he said there was no evidence a hernia problem, but there was a spot on my pancreas. At that time, he felt strongly that it wasn't malignant. I was completely shocked and of course I researched pancreatic cancer on the internet and did not at all like what I found.
I went to a gastro doc 11/30/04 for an EUS and that showed a growth on the head of the pancreas. He sent me for an MRI that day. I returned to him the next day, when I was told the MRI showed 2 tumors, one at the head and one at the tail. His opinion was they were probably neuroendrocine tumors and surgery would have to be done to remove them. I didn't see an oncologist at that time.
I went back to my surgeon, who it turns out, has probably done more Whipples in this area than anyone else. That was reassuring. He described to me the Whipple and surgery was scheduled for 12/22/04, which happened to be my 25th wedding anniversary.
A friend drove us to the hospital early that morning in her SUV, which was very helpful, because we had a major snowstorm that started the night before. I was prepped and the nurse who took care of me was a friend we had known for years. She said her daughter, also a nurse, would be in recovery when I came out. The following info is taken from the surgeon's operative report. I've condensed it somewhat.
Preoperative diagnosis: tumor of the uncinate process and tumor of the tail of the pancreas. Postop diagnosis: the tumor in the tail was an accessory spleen and benign. The tumor in the uncinate process was a neuroendocrine tumor, possible malignant. Operation: distal pancreatectomy, splenectomy and enucleation of uncinate process tumor with resection of mesentery of colon, cholecsystectomy.
Started with tumor at tail, which was fused to the spleen. It was felt to be a benign splenic nest. Spleen and tumor approx. 2 cm from tail of pancreas was removed. Attention turned to tumor at head. Tumor was descending from the uncinate process and was fused with the mesentery of the colon. Because it was felt this was neuroendocrine tumor and not a carcinoma of the pancreas, decision was made to resect part of the mesentery of that colon. (Dr's words here)- Our only hope was that this was a benign neuroendocrine tumor. A Whipple resection would not have been curative had it been a carcinoma of the pancreas. Tumor was resected from the various blood vessels, the duodenum, head of the pancreas and uncinate process and the mesentary of the colon. There was no defect in the duodenum. Gall bladder was also removed.
Here's info from the path report: Initial report by local pathologist - partially encapsulated red solid relatively soft tumor mass measuring 5x2.5x2.5 cm attached to segment of pancreatic tissue. Specimen weighs 33 grams. There is a neoplasm with features of endocrine tumor. The cells cannot be further identified. The tumor suggests a possible malignant behavior. On our sections the tumor may be completely excised, but the tumor-free margin is quite narrow. Speciment sent to Mayo clinic - islet cell carcinoma.
The tumor was never classified as to what type of islet cell, but I had been having problems with hypoglycemia for about 5 years, so my doctor thought it could be an insulinoma.
Surgery lasted 5 hours, then I went to recovery. I received 2 units of blood and magsesium sulfate. The surgeon told my wife that he had done a procedure of this type only 1 other time in 30 years, even though he had performed many Whipples. After 3 hours in recovery I went to ICU. Thankfully, I don't remember much in ICU. I had an NG tube, several drainage tubes and a PIC line. Surgery was on Thursday and on Saturday I was moved to a private room. A hospital secret is that private rooms don't cost much more than semi-private, so it was well worth the money.
Recovery in the hospital went pretty well. Lots of slowly walking around the hallways pushing my IV pole and having someone beside me. I was told by the nurses to lay on my side often and not only my back to help the bowels to start working. That was really painful until I found that lying in a fetal position toward the foot of the bed didn't hurt as much. Things that were celebrated - passing gas, having the NG tube out, that first sip of diet Sprite that tasted like heaven. I wasn't interested much in food. I had no appetite and no taste.
For pain I started out with a morphine pump which worked very well. Halucinated quite a bit - parts of the walls moving, voices of people that weren't there, but the pain wasn't too bad. I had compression devices on my legs that kept inflating/deflating and I thought my dog was in bed with me. Later I was switched to oral meds which weren't as strong. As soon as it was time for another, I was ready.
After I was eating somewhat, had no fever or complications and bowels were working again, I was discharged after 10 days in the hospital. Of course I was very tired and any moving around wore me out. I tried to eat very often. I still wasn't too interested in food and only a few bites would be full. Had a lot of chicken soup. I tried Boost and Ensure, but they were too rich. I found that the Carnation Instant Breakfast powder in some milk was pretty tasty.
The pain meds caused big problems with constipation. I took milk of magnesia and some prescription meds to help things move along, but sometimes I felt like I was trying to pass a softball - very painful.
Recovery went pretty well, but I did have one bought with severe nausea and wound up going to the ER. They ran some fluids in me and gave me Rx for anti-nausea meds and some other things. I felt better in a few days. I continued to feel very weak for a long time, but one night I noticed some dust in the floor around a baseboard and the next thing I knew I had a dusting cloth and was crawling all around the house, dusting the baseboards. My family thought I was crazy, but it was like a switch was flipped and I felt much better.
My appetite did return, eventually. I've had no digestive problems and need for enzymes, except for acid reflux, which preceded my surgery. I did lose 40 pounds, and have regained about 20 of that.
I didn't meet with my oncologist until after the surgery. He said that since the tumor was not the typical pancreatic carcinoma, that it was removed with clear margins and there was no evidence of metastasis, and that the CT scans and labwork was all negative, there was no need for chemo or radiation. All of my CT scans and checkups have been perfectly normal and generally I feel very well.
I only have one complication that has shown up, caused by scar tissue form the surgery. I've had pain in the right side of my belly which is worse when I lie down. That has been getting worse over the past few months, and I've also experienced constipation and associated pain. I've seen my family doctor, who consulted with the surgeon and sent me to the gastro doc, who did a colonoscopy and endocscopy. He said everything looked good except a rather sharp turn where the transverse colon turns down into the acsending colon. They feel the scar tissue in the area where the tumor was removed from the colon is pulling on the colon, causing the pain as the colon isn't allowed to relax as normal. And this week I had to go to the doctor because things felt stuck in that area. He said the colon isn't able to push things through that restricted area very well. He gave me a laxative and said take fiber supplements. The only real fix he feels is surgery to free up that area, but he's sure the surgeon won't want to go back in. I see him in July, so I'll see what he says.
Well, I hope all this didn't bore you and that this helps someone in their own journey. I had incredible support from my family and friends and feel very blessed that even though I had cancer, the type it was allowed successful treatment. I'm not ready to say yet I'm cured, but everything continues to look very good. This is one of those life events that is scary and confusing, but later you can see God's hand helping you along every step.
Do lots of research and ask lots of questions of your doctors. If you're not satisfied with the answers, get other opinions and seek out those who have lots of experience with pancreatic cancer. Feel free to contact me if you think I can help you in any way.