For this installment of the Project Purple Pancreatic Cancer Survivor Series, we will be hearing from survivors who had surgery as part of their pancreatic cancer treatment. Only a small percentage of Pancreatic Cancer patients are diagnosed early enough to be eligible for surgery. It is estimated that only approximately 15-20% of patients are eligible for potentially curative surgeries at their time of diagnosis.
There are two main surgeries for Pancreatic Cancer, the Whipple and the Distal Pancreatectomy. Most of the procedures performed fall into the category of the Whipple. In this operation, the head of the pancreas is surgically removed, along with part of the duodenum, and often part of the bile duct, gallbladder, and sometimes part of the stomach. The digestive tract is reconstructed by reconnecting the small intestine and bile duct back to the pancreatic remnant. In the Distal Pancreatectomy, the tail and part or all of the body of the pancreas is removed. The spleen is also typically taken out in the Distal procedure.
Both surgeries are major abdominal surgeries. The pancreas lies deep in the abdomen behind the stomach and has major arteries and veins that run through it. These factors make pancreatic surgeries complicated for the doctor. It is recommended that all patients seek out treatment where these surgeries are performed very frequently. Some patients have on-going long-term problems and complications, while other patients do relatively well over the long haul. I asked several pancreatic cancer survivors to discuss their surgical experiences.
ALLISON’S STORY
At the age of 49, I was diagnosed with Pancreatic Ductal Adenocarcinoma, stage IIB. Out of 25 lymph nodes removed, 9 were positive. I had a Whipple with a portal vein resection. The operation took 9 hours to complete. The pathology showed clean surgical margins. During my recovery, I never went to ICU. I took a shower two days post-op, and was released 5 days post-op. Vanderbilt University Medical Center is where I had my surgery. I honestly believe the portal vein resection is what has made the biggest difference, for me, especially with the adenocarcinoma diagnosis. I was diagnosed on February 9, 2013, and had the Whipple February 18, 2013. I am now 2 years out with a local recurrence, but have been stable on FOLFOX for last 16 months. I take digestive enzymes to help my body properly digest food.
LESLIE’S STORY
On December 3, 2014, I was told that I had Pancreatic Cancer. The tumor was blocking the flow to my spleen. I was very scared that they would open me up, find more cancer and not be able to operate. On December 15, 2014, I underwent surgery that removed the tail & part of the body of my pancreas, along with my spleen. The surgeon removed 16 lymph nodes and seven of them were positive for cancer. The surgeon felt confident that he got all of the cancer, but recommended chemotherapy to be on the safe side. I developed a staph infection at the drainage tube, but otherwise recovered nicely. I underwent a PET scan last week that showed no signs of cancer remaining. I will start six months of chemotherapy on February 11, 2015.
ROB’S STORY
Ten years ago, I was 47 years old when my cancer was discovered. The cancer was very early at Stage IA. I had the Whipple surgery, followed by chemotherapy and radiation. I had major complications with my surgery, and ended up having to have eleven follow-up surgeries. I suffered from internal bleeding. I died on the operating table and was revived three times. I am now doing well. The only long-term issue resulting from my surgery is diabetes, which is easily controlled.
LORI’S STORY
I previously had a hysterectomy for uterine cancer. Later, I had a test that revealed a cyst on my pancreas. I was diagnosed with Pancreatic Cancer on January of 2013. I had a distal pancreatectomy where part of my pancreas was removed, along with my spleen and part of my colon. My surgery was followed up with 6 months of chemotherapy and 28 radiation treatments. I suffer from lymphedema in my leg from the hysterectomy, but am otherwise doing well.
GINA’S STORY
The doctors had a hard time finding out what was wrong with me. They put three stents into my bile duct over two months. When the tumor was finally discovered in my pancreas, I was brought in for surgery just one week later. I never looked up anything about the cancer. I think I was numb. I told no one except for my family. I think I was more scared that I was going to die than I wanted to admit. I had the Whipple surgery in August of 2013. I was so awfully sick afterwards, but I could not take any pain medications. I think that made it worse. I am currently not receiving any treatments and am thankful for each day.
MELINDA’S STORY
Melinda: I was 38 years old in May 2013 when I was diagnosed with stage IIB Pancreatic Cancer. I had chemotherapy for 8 months to shrink the tumor. I had the Whipple surgery on January 3, 2014, followed by more chemotherapy. I was relieved to have the surgery because the chemo was taking a toll on me and I just wanted the tumor out of me. It took me about 6-8 months to begin to feel normal again. After surgery, some foods no longer agreed with me. I could no longer eat dark leafy greens and tomatoes. I would vomit if I ate too much. I continue to have problems with sudden bowel movements and extreme gas. I feel pretty fortunate that I do not have many long-term side effects.
MARY’S STORY
At the age of 44, I was diagnosed with Stage IA Pancreatic Cancer. I have an open distal pancreatectomy and splenectomy. The cancer was still microscopic within a melon-sized cyst in the tail of my pancreas. It was only discovered at that point because I insisted that there was something up under my rib cage that should not be there. After the surgery I developed a pancreatic leak. I had to have the incision re-opened and a wound-vacuum applied. I was on TPN intravenous feeding for six weeks. I was in the hospital for 15 days the first time and then re-admitted for another five days for an abdominal infection. I suffered many vitamin and mineral deficiencies for months until I could finally eat more. Anemia was a very serious complication for about 3-4 months. I went from being type 2 diabetic to type 1 diabetic. I began taking the digestive enzyme Creon about 18 months after surgery, along with Lactaid. My digestion is still unpredictable occasionally but is much improved overall. I developed a major hernia that required surgery eleven months after the original surgery. Almost four years later, I tire more easily than I used to and my digestion is not what it used to be. I know how lucky I am to be alive and leading a pretty normal life.
KELLY’S STORY
I was diagnosed with stage IA Pancreatic Adenocarcinoma in the head of the pancreas at the age of 64. I had clear surgical margins and no lymph node involvement. The tumor was described to me by the surgeon as being the size of a lime. I had pylorus-sparing Whipple surgery. I have dealt with weight loss and have had to adjust to my new digestive system. I have also experienced a loss of strength and increased fatigue.
JILL’S STORY
At age 34, I had a complete pancreatectomy. My entire pancreas was removed along with my gallbladder, spleen, part of stomach and part of the intestine. A week after surgery I became septic and had a second surgery to clean entire abdominal cavity and to remove the appendix. I have had numerous complications. I gained and lost 100 pounds in water weight. I had a blood clot, temporary loss of bowel control, digestive issues, spastic stomach, malnutrition, and post-traumatic stress disorder. I was in the hospital for about a month following the surgery and then was readmitted for dehydration one week later for one week. After about six months, my recovery started to pick up and I gained more strength and a better tolerance to food. I continue to struggle with digestive issues, stomach spasms, being underweight, low strength and muscle tone but have adapted to this different way of life.
SARAH’S STORY
I was diagnosed at the age of 48 with stage III Pancreatic Cancer. I had the Whipple surgery and ended up losing my spleen due to a blood clot. I was happy that the surgeon did not have to take out any of my stomach. I was very anxious leading up to the surgery, but I tried to put all of my trust in the Lord and not waste energy worrying. I mainly went to endless doctor appointment and tried to get my things in order. I often felt like I was in a daze. My recovery was very hard. The treatments were honestly killing me. I had my surgery in April of 2010 and I did not feel anywhere near myself until late February 2011. I have had complications. Over the short-term, I lost 50 pounds from surgeries and chemotherapy. Then, I developed a protein deficiency and gained 35 pounds of fluid. I had fluid drained several times. The doctors thought the cancer was back. Once I started on fluid pills and pancreatic enzymes, the fluid resolved. I also developed a blood clot in my jugular vein. I had to have a blood thinning shot twice per day for six months. Over the long-term, I have not regained 100% of my energy and I will always have to take digestive enzymes. All things considered, I am doing very well and am so blessed and grateful to be alive.
ANNA’S STORY
I was diagnosed March 2014 with Stage III Pancreatic Cancer. The cancer had invaded the arteries and veins in my pancreas. I had 7 months of chemotherapy, followed by radiation then finally the Whipple procedure. I was in the hospital for a week following the Whipple. Three out of 23 harvested lymph nodes were positive for cancer, so I am doing more chemotherapy. I am still healing, and need to take the digestive enzyme Creon, but otherwise am doing well.
DAWN’S STORY
I was originally diagnosed at the age of 46 with Stage IV. I have a Pancreatic Neuroendocrine tumor. My cancer had spread to the liver and my lymph nodes. Because I had a neuroendocrine tumor and not adenocarcinoma, I was able to have surgery. The doctor said that if I did not have the surgery, I would die within a month. The Whipple surgery took 16 hours. The doctor also removed a small bit of my liver. I was in the hospital for 3-and-a-half weeks. I was on target for healing, but when they removed the feeding tube, I threw up for two days. The tube had to be put back in place. I followed up the surgery with a chemotherapy pill.
Surgeries for Pancreatic Cancer are major surgeries, but they offer the best hope for long-term survival. These surgeries change everyone who has had one in some way. Some survivors have long-term complications, including problems with energy levels, issues with digestion and onset of diabetes. Other people seem to do relatively well after their operations, experiencing only minor long-term side effects. Either way, surgeries for pancreatic cancer offer the only potential cure for the disease at this point in time. With additional funding for clinical trials, hopefully new therapies will be discovered to cure Pancreatic Cancer.
