Lucky to Find It Early
- Diagnosed at stage I
- Chemotherapy and a Whipple
- Discovery of BRCA2 gene mutation leads to a clinical trial
- Struggling with survivorship
I was diagnosed with stage I pancreatic adenocarcinoma in July 2022, and I consider myself lucky that we found it so early.
My symptoms were fairly vague—upper GI pain and an upset stomach after meals. Even though my initial physical exams and blood tests were normal, we didn’t stop searching for the culprit. Eventually, an ultrasound showed a pancreatic cyst. My primary care doctor sent me for an MRI, which led to my pancreatic cancer diagnosis. My gastroenterologist, Dr. Tzimas at Huntington Hospital Northwell Health in Huntington, New York, did the biopsy in July 2022, which definitively confirmed I had cancer.
BRCA2: A Double-Edged Sword
I went to Dr. Birjis Akhund, an oncologist with NYU Langone in Huntington, New York. He is a very caring and intelligent doctor. I had eight cycles of FOLFIRINOX.
This was followed by Whipple surgery with Dr. Elliot Newman at Northwell Health’s Lenox Hill Hospital (New York City). After I recovered from the surgery, I had four more rounds of FOLFIRINOX.
I had diarrhea, which I managed by taking Imodium and Lomotil and having multiple hydrations during treatment. I experienced nausea and vomiting, which I treated with Zofran, prochlorperazine, and acupuncture. I also had neuropathy, but there wasn’t very much to treat that with. Additionally, I was very tired during treatment and had little energy.
During this time, my doctor had me undergo genetic testing. It turns out that I am positive for the BRCA2 mutation. This is a double-edged sword because the mutation can lead to an increased risk of cancer, but it also allowed me to participate in the APOLLO clinical trial for people with BRCA-related mutations at Northwell Health in Greenlawn, New York. I was in the trial for a year, and had some side effects, including mouth sores, fatigue, and nausea. I completed the trial in May 2024.
Knowing that I have the BRCA2 mutation also allowed me to be proactive for other cancers that may be risky in the future. I had my ovaries removed in January 2024 by Dr. Jeannine Villella at Lenox Hill Hospital to reduce the risk of ovarian cancer.
My Energy Has Returned
I finished my treatment and my clinical trial and have been cancer-free since then. I am happy and relieved to say that my body and my life have returned almost to what they were before my cancer diagnosis. I have lots of gastrointestinal and digestive issues related to getting such a complicated surgery like a Whipple. These come and go and it can be frustrating.
But I have found that I can eat whatever I like (as long as I take pancreatic enzymes) and most of my energy has returned. The scans keep coming back normal and I am very happy about that!
I do sometimes struggle with survivorship. With a disease like pancreatic cancer there is survivor’s guilt. I know many other people who have lost their battle and it’s tough to come to terms with why I have survived and others don’t. And I worry about the cancer returning. I have heard the term scanxiety and I can relate. You literally are holding your breath every time you get your latest CT scan. There certainly is a fear of if/when it will come back and it has taught me to truly practice “living in today” and not getting ahead of myself. It’s the only way to manage the fear and not let it consume me.
I also have some residual issues after all my treatments. But I know how lucky I have been since most people don’t get diagnosed with pancreatic cancer so early. I have just started traveling again and my prognosis is very good.
A Life With Purpose
I have been helping others who have the same diagnosis by volunteering as a cancer buddy for PanCAN. This makes me feel purposeful and that I am making a difference. I also participate in fundraising walks for the Lustgarten Foundation. In 2023, Team Jeneen raised $17K for research and I walked this April in the New York City walk with Dr. Newman. I created a costume like Wonder Woman but I’m “Whipple Woman.” I was even on the news.
I tell other people who have been diagnosed that they are not alone. There are many of us out there who have been through this. Focus on winning each day and do your best to get through the treatments and surgery. New trials and treatments are on the horizon. There is a lot of hope for treating pancreatic cancer.
I made it through the past two years and now I am back to living a relatively normal life considering all that my body has been through. Stay strong and keep moving forward. Find ways to manage the stress. Relax. Take it one day at a time.