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Voices of FORCE: A BRCA Mutation is a Factor in Pancreatic Cancer

November 14, 2016

By Rona Greenberg

Rona and her daughters

Rona and her daughters

Hereditary breast and ovarian cancer is part of my family history. My grandmother, Rebecca, for whom I am named, died from breast/ovarian cancer in1934; my mother was ten years old. My mother died from the same cancer in 1967; I was nineteen years old with three younger sisters.

In 1997, I was diagnosed with a mutation in the BRCA2 gene; fortunately, my sisters all tested negative. I decided to have my ovaries, fallopian tubes, and uterus removed in 1998 and then enrolled in a high-risk breast cancer surveillance program at the University of Pennsylvania. I subsequently was diagnosed with early stage breast cancer, ductal carcinoma in situ (DCIS), in 2010, and had a bilateral mastectomy.

Children of a BRCA mutation positive parent have a 50% risk of carrying the mutated gene. My two daughters, ages 33 and 39, were tested over 10 years ago. They both tested positive for the BRCA2 mutated gene. They participate in a high-risk surveillance program at the Basser Center for BRCA at the University of Pennsylvania and are monitored by a gynecological oncologist in Manhattan. They are planning to have risk-reducing surgeries in the future.

I consider myself very lucky to have found FORCE on the Internet in 2003. I met a group of the most remarkable and smart women, who embraced me with love and support, shared critical and cutting edge information, and empowered me to make informed medical decisions.

Then, it became my turn to help others. I felt a deep responsibility to share what I had learned about hereditary cancer and became the North Jersey Peer Support Group Co-Leader. I am now able to pay it forward by having the incredible opportunity to offer support and advocate for those who are at high risk or are survivors of hereditary cancer.

In October 2015,I felt an odd, intermittent pain under my right rib cage, which continued for several days. My primary physician ordered an ultrasound and detected innumerable masses in my liver. A CT scan showed a very large tumor in the tail of the pancreas that extended into its body. I went into research mode, literally 24 hours a day. I networked with FORCE members and the amazing Sue Friedman and learned an incredible amount of information regarding BRCA-related pancreatic cancer.

I saw a local oncologist and had a biopsy to confirm the diagnosis. It was devastating – pancreatic adenocarcinoma, BRCA2 related, stage IV, metastatic to the liver; it’s inoperable and incurable. Research shows that BRCA mutation carriers are at an up to 5% lifetime risk of pancreatic cancer, with BRCA2 mutations carriers at a higher risk than BRCA1 mutation carriers. Somehow this was not on my radar screen and I missed it entirely! I was not aware that some doctors use endoscopic ultrasound alternated every 6 months with MRI to screen for pancreatic cancer, especially for those of us with the mutated BRCA2 gene.

The local oncologist told us that my knowledge of the BRCA relationship and pancreatic cancer exceeded his! He recommended that I look for a clinical trial. My research showed that it was important for the trial to be investigating a promising new class of drugs targeting BRCA mutations called PARP inhibitors. I explored several randomized clinical trials involving a combination of a PARP inhibitor drug, a platinum drug, and chemotherapy – the drugs which my research found to be the most effective for my BRCA-related pancreatic cancer. However, when a clinical trial is randomized, the patient is assigned by chance to either arm of the trial – either the group receiving the targeted PARPi drug or the other group receiving only standard of care. I did not want to take a 50% chance of not receiving the PARPi drug and declined to participate in randomized studies. Fortunately, I found a non-randomized trial at Georgetown Hospital, Washington, DC. In November, 2015, I entered the trial led by Dr. Michael Pishvaian, principal investigator of The Study of Veliparib in Combination with 5-Fluorouracil and Oxaliplatin in Patients with Metastatic Pancreatic Cancer.

The tumors decreased significantly during the 10 months in the trial. I decided to explore other treatment options in preparation for when the trial would end due to disease progression. I investigated the possibilities of immunological therapies with Dr. Robert Vonderheide at the University of Pennsylvania and innovative science-based, personalized, precision medicine with Dr. Allyson Ocean at Weill Cornell/New York Presbyterian Hospital. In August 2016, testing revealed that the tumors had started to grow and the clinical trial ended for me. Dr. Allyson Ocean became my lead oncologist and I am currently participating in the Precision Medicine Research Study using a different PARP drug, Olaparib, as well as the chemotherapy drug Irinotecan. We will be adding other treatments to the protocol.

Over the last several months, in my search for cutting edge research, I have attended the American Association of Cancer Research Special Conference for Pancreatic Cancer and the Annual BRCA Scientific Symposium at the University of Pennsylvania.

In June, I was personally invited to attend Vice President Joe Biden’s Cancer Moonshot Summit, sponsored by the White House. It was absolutely thrilling! However, I learned that funding and research for pancreatic cancer has been significantly behind compared to other cancers, in part due to the dismal prognosis and survival statistics. It has only been in the last 5-7 years that more important research has been conducted.

Through my journey I have learned invaluable information which will hopefully extend my life. Yes, knowledge is power and hope! By empowering others, we can save lives. Just imagine a world without hereditary cancer!

Rona Greenberg is a mother and grandmother, a breast and pancreatic cancer survivor, a dedicated FORCE volunteer, and a Letswinpc.org advocate!

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4 Comments

  1. Corey says:

    HI Rona. Your story has touched very close to home with me. My mother passed away last year after an almost 2 year battle with pancreatic cancer. She has lost 2 sisters to breast and ovarian cancer. So growing up the women in my family, including myself, always knew that we were at high tisk of cancer. We were not aware of brca and didn’t know there were options to try to prevent hboc. Fast forward to April 2016…my cousin informed me that she has ovarian cancer and of her brca2+ status. I was immediately screened and tested positive for the same gene mutation. My worst fear was confirmed. In my research I learned about the increased pancreatic cancer risk. This is probably the hardest part for me. I asked my mother’s doctors about screening. They told me there really isn’t a screening process and that I shouldn’t worry too much as it is not a hereditary cancer. Anyway, I say all this because I’m looking for resources or anyone that can talk to me about what I should be doing. I’m currently planning to have a mastectomy in February and a hysterectomy later in the year. I can’t thank the women of force enough for helping me to prepare myself for this journey. What was once a terrifying mystery is now a journey I feel that I can navigate. Rona, I am terribly sorry for what you are going through. I wish you the very best. I will keep your story with me.

  2. Jessie says:

    Rona,
    What a fabulous article and summary of your journey. This is such important information to share. I am so honored to be one of your co-leaders in our desire to share the knowledge we have received.

  3. Barbara Rice says:

    Just read Rona’s story. I was diagnosed with stage 1 breast cancer in 2012. Genetic testing revealed that I have the BRCA 2 mutation. I had a double mastectomy in September, 2012, and a hysterectomy in February, 2013. My oncologist said I should have an endoscopic ultrasound every year to check for pancreatic cancer. I also had two close relatives who died from pancreatic cancer. A very small cyst was found on the tail of the pancreas in 2013. I just had my fifth EUS and the cyst has not grown. It seems that the EUS is important and I would encourage anyone who is BRCA 2 positive to have one yearly.

  4. Julie Mitchell says:

    Thank you for sharing Rona’s story. I have lost both of my parents and an aunt to pancreatic and my sister is currently battling it. I, as well as 3 of my siblings are BRCA2 positive. I underwent a hysterectomy about a year ago and participate in the Pancreatic Family Registry at Memorial Sloan Kettering. Despite doing all that I can, as far as I know, to get ahead of this nasty disease, it is difficult as an at risk woman and as a first hand witness to my sister’s struggle to not feel a bit helpless. It is extremely encouraging (and comforting) to read about individuals in similar situations, taking control of their treatment plans and fighting the good fight. Thank you again for sharing.

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