Wednesday, October 22, 2014

My Port is Gone but the Fight Continues

 I got my chemo port, aka Frankenboob, removed yesterday.

Here is the before picture...

I don't have an after picture yet because it is covered in gauze and bandages.

I am very aware of how lucky I am. I saw several nurses yesterday and each one asked what my diagnosis had been. When I replied, "Pancreatic Adenocarcinoma", I got the same response from each of them. It is the response you get from people who are familiar with this disease. Typically, people nod knowingly and say, "Wow." Then they keep nodding quietly, because what else can you say? 

Except I had one really awesome nurse who said, "We almost never do port removals for pancreatic cancer patients." Then I was the one nodding silently, because I know the very grim statistics. Yes, I  know each patient is a statistic of one but I also know that my very small support group of online friends with PC has been rocked by recurrence and loss over a very short period of time. I know one of my friends who is fighting PC had to bring in hospice this week. Another friend lost her mom on the same day my port came out. I have other friends who are actively fighting recurrences or who are trying to figure out why their tumor markers are rising. So I am pleased to have my port out, but the bigger picture is a sobering reminder of how devastating this diagnosis is both for patients and for their families. 

The five year survival rate for pancreatic cancer remains at 6% in the United States. Approximately 75% of PC patients do not make it the first year. According to the SEER website, PC is the 12th most diagnosed cancer in the US, but the fourth leading cause of cancer deaths. It is estimated that 46,420 new cases of pancreatic cancer will be diagnosed this year, with 39,590 people dying from the disease. By contrast, there will be 232,670 new cases of breast cancer diagnosed, with approximately 40,000 deaths. 

If projections hold, pancreatic cancer will become the second leading cause of cancer deaths in the United States in a few years.

I wonder why the budget for pancreatic cancer research remains so low in comparison to other cancers. Is it because the prognosis is typically so grim that many people deem it as a hopeless situation? I wish people could look at those of us who have battled the PC monster and see us for who we are. While the numbers are not good, we have not lost hope. We have a lot of fight in us. We want and need better tools in our arsenal to battle this beast. We are men and women, young and old. We are daughters and sons. We are sisters and brothers. We are wives and husbands. We are mothers and fathers. We are humans who deserve better. So while I celebrate this little milestone for myself, I am pained by what my "PC family" is forced to endure. Something has to change. Too many amazing people have been lost to this illness. Too many more will be lost after fighting valiantly. We desperately need more funding for research into ways to improve survival rates. Pancreatic cancer fighters deserve better than to be told, "We have a chemotherapy that may give you an additional month of survival, but it will make you incredibly sick in the process." It is time to demand more research dollars for this particularly deadly illness. I know a lot of people who are cynical about "awareness", but with awareness and attention comes money, and that is what we so desperately need.


  1. So glad your port is out, may you never need another. And hopefully, pancreatic cancer gets the funding it deserves, not just awareness that it exists.