With Hereditary Cancer Syndrome, Every Month Is an Awareness Month

Thank goodness it's November.

It's taken me a long time to realize what a toll October, Breast Cancer Awareness Month, takes on me each year, but last week, it hit me. At an awareness event at my synagogue, one of the presenters scribbled the word "metastatic" in all capital letters on the flipchart at the front of the room - M-E-T-A-S-T-A-T-I-C - and I thought I might lose it.

As though a time machine had whisked me away, it was Friday, April 2, 2010, all over again; I was alone with my mom at the hospital. Just outside the room where she'd been since the previous Monday (the night we were to have hosted the first seder of 5770), amidst the constant bustle of the nurses' station, her oncologist offhandedly said to me: "It's everywhere."

It's impossible to believe that fateful day was nearly a decade (a decade?!?) ago, but in the intervening years, I've done everything possible to protect my own health since I learned I carry the same BRCA2 genetic mutation that we now know contributed to my mom's death. In addition to significantly increasing carriers' lifetime risk for breast and ovarian cancer, it also raises my risk of melanoma and pancreatic cancer - and in men, the risk of breast, prostate, melanoma, and pancreatic cancer.

Although I'm glad to have turned the corner from October into November, the latter is Pancreatic Awareness Month, and my vigilance is year-round, so, here are a few statistics about the disease from the Pancreatic Cancer Action Network (PANCAN):

• Pancreatic cancer is the third leading cause of cancer-related deaths in the United States;
• One of the deadliest cancers, it has an extremely low survival rate - just 9 percent;
• This year, an estimated 56,770 Americans will be diagnosed with pancreatic cancer and 45,750 will die from the disease; and
• It is estimated that in or around 2020 (just two months away), the disease will rise to be the second leading cause of cancer-related deaths.

Of course, I'm grateful that my family doesn't have a history of pancreatic cancer. At the same time, according to PANCAN, the cause of most pancreatic cancer is unknown, and there are no early detection tests and few effective treatments.

Having said that, with each passing year, I'm increasingly grateful to FORCE: Facing Our Risk of Cancer Empowered, the grassroots organization that has done so much for me during the last decade. In addition to introducing me to other BRCA+ women whom I could learn from and lean on throughout my journey, FORCE has given me a network of friends who are framily and a platform from which I can spread awareness about hereditary cancer mutations, as well as share my knowledge, gained through experience, to help women who are behind me - as thrivers, survivors, and previvors - on their own hereditary cancer journeys.

Most recently, FORCE helped me uncover this clinical trial for pancreatic surveillance, designed to collect enough data to allow the researcher to obtain funding to conduct a full study that may lead to early detection among individuals at highest risk. Because it's open to individuals with BRCA mutations, but without a family history of pancreatic cancer, it ensures that I can continue to do everything possible to protect my health. For this and so much more, I'm ever-grateful to my FORCE family.

With that in mind, please consider making a donation to FORCE - not only in gratitude for what the organization has done for me, but also to ensure that it can continue to provide much needed support, resources, and advocacy to others affected by hereditary cancer syndrome, and to help me fulfill my annual $250 fundraising goal as a volunteer outreach leader for FORCE in New York City.

With deep thanks and appreciation,
~ Jane.

#BlogExodus: Welcome

Although I’m not sick (pooh, pooh, pooh), today I welcomed yet another doctor to my larger-than-average cohort of medical professionals. I’ve signed on to be a subject in a research study surveilling BRCA2 mutation carriers and others at high risk for pancreatic cancer. The study’s primary outcome measures are:

• The number of premalignant or malignant pancreatic conditions found by alternating annual endoscopic ultrasound (a somewhat invasive procedure that requires anesthesia) with MRI testing over the course of five years
• The number of participants with premalignant or malignant pancreatic conditions, as a measure of safety and efficacy

I know I sound like a broken record (do millennials understand this expression?), but BRCA mutation carriers are at increased lifetime risk of developing not only breast and ovarian cancers, but also pancreatic and prostate cancers, as well as melanoma and male breast cancer. Furthermore, the lifetime risk of pancreatic cancer is higher among those with BRCA2 mutations than those with BRCA1 mutations. The risk for BRCA1 mutation carriers who also have a family history of pancreatic cancer approximately equals the risk among those with BRCA2 mutations.

It’s estimated that one in 400 people in the United States carries a BRCA mutation and most of them are unaware of their genetic status. Within the Ashkenazi Jewish community, approximately one in 40 people is a BRCA mutation carrier.

Considering that the schlep to White Plains was relatively painless (thanks to the good company of my sister!), there seemingly are no downsides to my participating in this endeavor. Of course, it will offer me a layer of protection against pancreatic cancer that I otherwise would not have, but it also will advance the body of scientific knowledge around screening for this disease, potentially saving lives along the way.

For more information about BRCA and other hereditary cancer mutations, visit FORCE: Facing Our Risk of Cancer Empowered, a grassroots organization that offers information and support, and promotes evidence-based research, advocacy, and awareness endeavors on behalf of individuals and families affected by hereditary cancer.

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Jewish month of Nisan leading up to Passover, which begins at sundown on Friday, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts.