In 2011, the threat or thought of pancreatic cancer never crossed my mind. I was a healthy 39 year old wife, mother of 3 children, and ESL teacher. When abdominal pain began to wake me up in the middle of the night, I went to the doctor once. Even though the pain continued, I was satisfied with the explanation that it was my gallbladder-a common issue for middle aged women who have had children.
It wasn’t until I was sitting in Dr. Schulick’s office, the then head of surgical oncology at Johns Hopkins, that the threat of pancreatic cancer became real.
I have since been diagnosed with an Intraductal Papillary Mucinous Neoplasm (IPMN) of the main pancreatic duct. Translation? It’s a slow moving cystic tumor (often called lesion) that puts me in the high risk category for developing pancreatic cancer. The numbers vary but I have seen the malignancy frequency fluctuate between 70-85%.
Every December, I go up to Sloan Kettering for a CT scan and a follow-up appointment with my surgical oncologist. He looks at the CT scan to see if the tumor has changed whether it be by size or by looks. So far he hasn’t seen enough change to warrant a resection. This isn’t a surprise because research shows that IPMNs like mine can appear 15-20 years ahead of pancreatic cancer. After my scan, I then resume quarterly blood tests with my local doctor to see if my liver or pancreatic enzymes change.
I have had several friends say to me, “Can’t you just ask the surgeon to remove it? Why are you waiting?” And some have even gone insofar as to ask me if I feel like a ticking time bomb. The latter question initially surprised me but I realized that I would be thinking the same thing if I were in their shoes.
The unfortunate thing about pancreatic cancer and its affiliated diseases is that there is nothing simple about it. Pancreatic cancer itself has an average survival rate of 8% after 5 years-the lowest survival rate of all major cancers. In 2016, it surpassed breast cancer deaths and by 2020 it’s predicted to tie lung cancer as the second deadliest cancer.
Pancreatic cancer is called the “silent killer” due to many factors:
- Lack of treatment options
- Lack of research
- Lack of early detection markers
- Lack of public education
Lack of treatment options. People in my shoes have two options: wait or resect. Waiting, although not ideal, is often better than a resection operated under the umbrella of uncertainty. Because the pancreas is deep tissue, intertwined with several major organs and has major blood vessels running through it, resections often come with as much risk as waiting. The three types of resections are The Whipple, total pancreatectomy or distal pancreatectomy. The Whipple, which removes the pancreatic tail and head, typically affects five organs and takes anywhere from 4-8 hours depending on the complexity of the tumor. The survival rate after a Whipple can be as high as 25% after five years. Additionally, around 20% of pancreatic cancer patients have the option of a Whipple. More often than not, the cancer is too advanced for the procedure. A total pancreatectomy, the complete removal of the pancreas, may take up to 8 hours, and a distal pancreatectomy, the removal of the bottom part of the pancreas, can take up to 4-6 hours. Most of these procedures require extensive recovery times and lifelong enzyme supplements. And, most importantly, the disease returns in 80% of patients with resections, who die within five years of diagnosis.
If a Whipple is not an option, chemo and/or radiation may be offered but pancreatic cancer is renowned for being resistant to both.
Lastly, since 1974, only four drugs have been approved by the FDA to treat pancreatic cancer.
Lack of research. The lack of research is not for lack of effort on the medical community dedicated to pancreatic cancer but because of lack in funding. Presently, only 2% of Federal Funding to NCI goes into pancreatic cancer research. This is significantly less than what goes into lung, breast, colon, and prostrate cancer. The fact that pancreatic cancer mortality statistics haven’t changed in 40 years is a huge indicator of this.
Lack of early detection markers. Currently, there are no biomarkers for pancreatic cancer. A gene mutation, however, has been found. According to PCAN, “Around 95 percent of pancreatic tumors are driven by mutations in a gene called KRAS, which signifies a very aggressive and treatmentresistant tumor. Mutated KRAS has been dubbed “undruggable,” although efforts are underway to devise targeted therapies.”
Lack of public education. Pancreatic cancer is often subtle until it’s in the later stages. For example, someone might experience heartburn or upper right quadrant pain but it’s dismissed as acid reflux, gallbladder issues, or something similar. Their symptoms could go on for years. They might be diagnosed with diabetes, a correlating factor that scientists are working to figure out. Does pancreatic cancer cause diabetes or does diabetes cause pancreatic cancer?
When pancreatic cancer gets more advanced, you might experience itching, unintentional weight loss, back pain, jaundice, or blood clots caused by DVT.
In my case, I get occasional upper right quadrant pain right below the rib cage. It happens more at night but there is really no rhyme or reason to when it shows up. I have also had a slight, not significant change in blood sugar. Where I used to run a low 70 during fasting, I now run between 110-120. I have started incorporating more protein into my diet, especially in the morning, to offset this so it’s not a gigantic deal. I also had one blood clot in my left calf three years ago (none since) that is caused by DVT. I didn’t realize until researching this entry that DVT is sometimes related to pancreatic disease or tumors.
Now, for the important part: I am only aware of these things because my IPMN was found by accident. In all honesty, the symptoms that I have experienced/do experience are subtle-subtle enough to where they could have gone on for years without me giving it much thought.
It sounds like I have painted a very bleak picture of pancreatic cancer and its related diseases. It’s certainly not all rainbows but I want to make one thing very clear. I look at my life as a gift, not some ticking time bomb. I lead a normal life that doesn’t revolve around what the future may hold. This said, however, I think it’s very important that I use my gift wisely. And this, I believe, is doing my part to advocate for pancreatic cancer.
Part of this advocacy is showing you where to go if you have been diagnosed with pancreatic cancer or have a high-risk lesion like me.
There are two stellar foundations that people affected by pancreatic cancer should be aware of: The Lustgarten Foundation and The Avner Foundation.
LUSTGARTEN FOUNDATION: its goals are broken down into three parts:
- “Increase funding/support research related to prevention, diagnosis, and treatment of pancreatic cancer.”
- Heightening public awareness on multiple levels
- Connecting and encouraging dialogue amongst individuals researching pancreatic cancer
Before its founding, there were only a dozen researchers studying pancreatic cancer. Now there are over 1,000 researchers. Even more significant is that 100% of its donations goes into research. And the projects that the foundation funds is 100% dedicated to pancreatic cancer. For more information on the foundation: http://lustgarten.org/homepage
AVNER’S FOUNDATION: this foundation was set up in memory of Avner Nahmani, who lost his battle to pancreatic cancer. The foundation helped fund perhaps the most innovated pancreatic cancer research to date. In 2016, a team of Australian scientists, who were partially funded by the foundation, discovered that pancreatic cancer is actually broken down into four diseases. This is a crucial step in understanding how to create effective treatments for pancreatic cancer.
For more information on the foundation and the research from the Australian scientists:
There are also two hospitals that have extensive pancreatic cyst clinics and pancreatic cancer research centers: Johns Hopkins
and Sloan Kettering
-both of which have programs funded by the Lustgarten Foundation and both of which I have used. For more information on both hospitals: http://pathology.jhu.edu/pancreas/cyst/index.php
Lastly, the advocacy arm for pancreatic cancer is Pancreatic Cancer Awareness Network. Presently, they are asking NIH for more research funding because as I mentioned, the money going into pancreatic cancer is meager compared to other forms of cancer. They are also holding an advocacy day in Washington D.C. on June 20 and June 21 where you can bend the ear of congressional leaders for better research, better treatment options, and better public education.