I was diagnosed with pancreatic cancer in November, 2013. Following surgery and six months of chemotherapy, I was declared to be free from cancer. By all accounts, I am one of the lucky ones. In a disease that kills the vast majority of patients, I know I am exceptionally fortunate to be alive. I am thankful for every day I get to enjoy with my family and friends. I relish the opportunities I have to make memories with the people I love. There are so many incredible gifts that come with being a cancer survivor. However, there are many issues that my fellow survivors and I must deal with on an ongoing basis.
Psychological Effects of Pancreatic Cancer
Living with the knowledge that pancreatic cancer returns in the vast majority of cases can cause a great deal of psychological stress. One survivor tells me, “I truly believe the aftermath of pancreatic cancer is harder than the initial diagnosis. I have good days, bad days and then days I cannot describe. It is very hard to get a handle on how to live after such a tough diagnosis. When the hiccups come, the stress is paralyzing.”
I certainly understand what my friend tells me. After two years of survivorship, I was confident that I was done with pancreatic cancer. I was so confident, in fact, that I told my husband not to bother coming with me to a follow-up appointment with my oncologist. When I heard the words ‘area of concern’ and ‘biopsy’, it felt like I was having an out of body experience, watching someone else’s life. For the next six weeks, I lived in a state of limbo, not knowing if my cancer had returned or not.
While the biopsy did not show cancer, my next doctor’s appointment brought more uncertainty. The roller coaster of returning to a state of emotional normalcy, followed by intense upheaval is incredibly difficult. The rug is repeatedly ripped out from under the survivor, family and friends. For many survivors, the long-term uncertainty is one of the most difficult aspects of survivorship.
Many cancer survivors, particularly those who have had pancreatic cancer, experience some form of ‘survivor’s guilt’. It is not unusual for survivors to wonder why they have survived an illness that has taken the lives of so many others. Though this may sound irrational, it is common to grapple with feelings of guilt over living through a disease not many people survive.
Other factors can impact a survivor’s quality of life. The economic impact of a cancer diagnosis can carry lifelong ramifications. The expense of surgery and treatment can be financially devastating for a patient depending upon insurance coverage. Coupled with a reduced income due to recovery and treatments, it is no wonder cancer patients often find themselves in debt. While some people recover from pancreatic surgeries just fine, others deal with lifelong digestive problems. Some patients find they are unable to return to full-time employment. Sadly, survivors can also face employment discrimination. Returning to the workforce can be a challenge for many who have faced cancer.
In addition, cancer patients face a myriad of physical issues. Fatigue is a problem that many survivors must address. Although it is a prevalent complaint among cancer survivors, fatigue is often written off because it is not considered a life-threatening issue. For the survivor, however, fatigue can severely impact quality of life. I know I have never regained my pre-cancer energy levels. My doctors acknowledge the fatigue, but they have no answers. This offers little comfort to someone who is used to constantly being on the go.
Isolation and Lack of Support
While some cancer centers are addressing the unique needs of patients who have faced pancreatic cancer, many other hospitals are still behind the curve. When I first went to my local cancer center for a pre-chemotherapy introductory meeting, I was handed a list of support groups. There were groups for breast cancer, lung cancer, leukemia, and even brain cancer. I held up the paper and asked the social worker, “What about those of us who don’t have one of these kinds of cancer?” She gently told me that they did not have enough survivors to form a support group. Having pancreatic cancer is already an isolating experience, and at that point, I felt more alone than ever.
Addressing the Issues
Recently, I spoke with a doctor who told me she is routinely seeing patients now who would not have survived some years ago. While having more people survive cancer is wonderful, my doctor acknowledged that the medical profession has not yet reached a point where it is adequately addressing the needs of long-term cancer survivors. My doctor told me, “This is a great problem for us to have, but it does not help survivors right now.”
Indeed, one of the benefits of early cancer detection and improved treatments is increased survivorship. The medical profession is studying the long-term problems survivors face. Hopefully, as knowledge of these issues increases, the health care system will be able to help give survivors the tools they need to deal with potential problems.
Cancer as a Chronic Condition
In some cases, doctors are beginning to treat metastatic cancer more like a chronic disease. As treatments improve, some patients may live for months or even years while receiving cancer treatments. Unlike other chronic diseases, however, the treatments for cancer are toxic to the body. Due to the complications that arise from treatment, a person cannot remain on chemotherapy indefinitely. Living with ongoing testing and treatments takes a toll on cancer survivors, who wonder when their cancer will stop responding to their current treatment protocol.
Survivors Moving Forward
Make no mistake…being a pancreatic cancer survivor is a tremendous blessing. Every survivor I have had the pleasure of talking with tells me how thankful they are to have extra time enjoying life with loved ones. Still, the perception that life after cancer is all rainbows and unicorns needs to go. Cancer survivors need to feel they can be open in discussing the challenges they face as they attempt to go on with their lives. Survivors needs to be able to voice concerns and complaints without worrying they will be judged or told, “You should just be happy to be alive.” None of us asked to have a horrible, deadly disease and we need to be able to mourn the loss of the body and the life we used to have without feeling shame.
The good news is that I am here to write this blog entry. My hope is that in 5 years, there will be many more survivors like me: people who have struggled to make sense out of having lived through pancreatic cancer but who are now living full and rewarding lives. Just as all people have bumps in the road, so do cancer survivors. My hope is that, in the future, as doctors unlock the secrets to early detection and a cure, they will simultaneously address the specific life-changing needs of all pancreatic cancer survivors.
Project Purple supports pancreatic cancer patients and survivors through a number of patient assistance programs. Follow this link for more information: