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Voices: Pancreatic Cancer Screening

by Susan Beausang

Susan BeausangAs a carrier of a BRCA2 mutation, I knew about my elevated lifetime risk for pancreatic cancer. Having the mutation and losing my father to pancreatic cancer qualified me to participate in a pancreatic screening study using endoscopic ultrasound (EUS) for early detection. I felt fortunate to participate in the study, which identified a precancerous pancreatic cyst. I then underwent a Whipple procedure (surgery that removes a portion of the pancreas, stomach, gallbladder, bile duct, and small intestine). Since then, two of my sisters have had similar screenings. My younger sister, a two-time breast cancer survivor, has a pancreatic tumor—devastating news, but the tumor is small and her prognosis is excellent. My older sister has two pancreatic cysts. None of us are grateful for our predisposition to cancers, but we are thankful that I started this search-and-destroy ball rolling.

After witnessing the breast cancer diagnoses and treatment of my grandmother, maternal aunt, mother, and two sisters, I was desperate to avoid what felt like my own inevitable diagnosis. My siblings were divided; some didn’t want testing, but I persisted. Genetic testing revealed that four of my six siblings also have BRCA2 mutations. Upon learning of my mutation, I underwent a prophylactic double mastectomy and salpingo-oophorectomy, knowing this was the right decision for me.

Soon after my surgeries, my hair started falling out. In three months, I was bald with no hair anywhere: no eyelashes, eyebrows, or hair on my arms or legs. I had alopecia universalis, a disease in which my immune system attacks my hair follicles. Having surrendered my breast and ovaries, complete hair loss was almost more than I could handle. Little by little, I faced the reality of life with baldness and I started looking for headwear that would allow me to feel remotely normal. Wigs were conspicuous and uncomfortable; maybe fine for a night out, but not an option for every day. With no fashionable solution, I decided to design my own—the beaubeau®, a high-fashion head scarf for women and girls with medical hair loss. Unfortunately, my baldness wasn’t my last bump in the road.

The decision I faced with my pancreatic cyst was much harder than my decision for preventive mastectomy and oophorectomy. The pancreas fulfills multiple functions, and because pancreatic cancer symptoms are vague, most people are diagnosed at an advanced stage. My father died within nine months of his diagnosis. But a cyst is not cancer, and a Whipple is no small intervention. I changed my mind back-and-forth right up until the surgery. I consulted with three different specialists, none of whom agreed with the others. I chose to be proactive and proceed with the Whipple, and my recovery has gone remarkably well. Prophylactic surgeries are never free of second-guessing. Soon after my procedure, when I was figuring out what I could and couldn’t eat, I wondered whether I had made the right decision. The passage of time and my sister’s diagnosis convinced me that my decision was the right one.

Life is full of mottos. One that has special meaning for me is “knowledge is power.” My grandmother went in for a biopsy and came out with a radical mastectomy (she was never even asked for her permission), but my generation has options. I didn’t get to choose my genes, but I can choose how I manage my risks.

Susan Beausang is a third-generation breast cancer survivor and a BRCA mutation carrier. She is also president of 4Women.com, a company that provides fashionable headwear for women and girls with medical hair loss.

Share Your Story

Do you have something to say that may inform our readers or ease their experience? We invite you to share your reflections or personal story about dealing with the issues of hereditary breast or ovarian cancer. Tell us how you feel, how you cope, or what you’ve learned. E-mail stories of 500-550 words to info@facingourrisk.org or mail to FORCE, 16057 Tampa Palms Blvd. W., Tampa, FL 33647. Please include your name and daytime telephone number so we can contact you if we decide to publish your story in a future issue.

 

Looking for a Better Way to Detect Pancreatic Cancer

by Sue Friedman

Symptoms of pancreatic cancer can be vague, and because the pancreas (a small but important abdominal organ) is positioned behind the stomach, diagnosis can be difficult. The disease is frequently not found until it has advanced. Several researchers are looking for better ways to detect pancreatic cancer. Susan’s cyst was discovered because she was fortunate to learn about, qualify for, and participate in a pancreatic screening study for highrisk people.

Many factors, including genetic influences, age, gender, and ethnicity contribute to pancreatic cancer risk. The risk is also higher for people who smoke and for those who have longstanding diabetes or chronic pancreatitis. Although people with BRCA mutations have a greater risk for pancreatic cancer than people in the general population, most studies restrict participation to individuals who also have a family history of pancreatic cancer.

Pancreatic screening study

If you are at high risk for pancreatic cancer and have a family history of the disease, you can help researchers find a better way to detect early-stage tumors. Moffitt Cancer Center in Tampa, Florida is recruiting individuals to study pancreatic cancer screening using endoscopic ultrasound. The procedure requires mild sedation (like a colonoscopy) while a flexible tube with a small ultrasound imaging device is passed through the esophagus and into the stomach. The ultrasound allows doctors to look more closely at the pancreas for any abnormal changes and take tissue samples to determine if cancer is present. The goal of the study is to determine whether screening high-risk people can detect early asymptomatic precancerous or cancerous changes in the pancreas, leading to better outcomes.

Who qualifies for this study?

Moffit’s study is open to people with any of the following criteria:

  • two first-degree relatives with pancreatic cancer
  • three family members with pancreatic cancer, including at least one firstdegree relative
  • diagnosed with Peutz-Jeghers Syndrome and are age 30 or older
  • diagnosed with hereditary pancreatitis
  • diagnosed with Familial Atypical Multiple Mole Melanoma Syndrome
  • a BRCA2 mutation and a family history of pancreatic cancer

Participants will be asked to:

  • consult with a clinician to determine if they are eligible for the protocol.
  • consent to undergo an Endoscopic Ultrasound screening exam with possible Fine Needle Aspiration (EUS/ FNA), and surgical and radiographic evaluation if the EUS/FNA test result is abnormal.

More information

To find more information about the study, contact Tiffany Campos, Research Coordinator (813-745-8358) or Jason Klapman, MD, Principal Investigator (813-745-8361).

Visit the FORCE clinical trials page to find other studies for people at high risk for cancer.

 

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