A Guide to Supporting Individuals and Families Affected by Hereditary Cancers

Briana Arnold was eight years old when her mother was diagnosed with ovarian cancer, and twelve when her mom passed away from the disease. A decade later, Briana’s college advisor suggested she speak to a geneticist about her own risk of cancer due to her family history. This led to a referral from her doctor for genetic testing and the discovery that she carries the BRCA 1 mutation.

Tested at the Seattle Cancer Care Alliance, Briana found out that a mutation in the BRCA 1 gene places an individual at extremely high risk for breast, ovarian, and related cancers (HBOC). Just 21 years old at the time, the young women’s cancer clinic at the Alliance recommended Briana to FORCE (Facing Our Risk of Cancer Empowered) where she found much-needed support in dealing with her heightened risk for hereditary cancers.

Briana explained the implications of testing positive for BRCA 1 and the advice she received in dealing with them:

The last statistics I heard is an 87 percent lifetime chance of breast cancer and a 43 percent lifetime chance of ovarian cancer. The information they told me in 2012 was that if I lived to be 70, I had a 40 to 85 percent chance of breast cancer and 40 to 50 of ovarian cancer. This could be different for my specific mutation, which is 5677insA. 

I was advised to start breast screening a few months after getting tested when I turned 22. So, I started in May of 2012 with alternating mammograms and breast MRIs every six months. They advised that I come back to the clinic when I was closer to 30 to start with ovarian cancer screening.

Meet the Expert: Advocate Briana Arnold, MPH

Briana Arnold, MPH, is a “previvor” and an advocate for individuals and families affected by hereditary cancers in Oregon. She is now the owner of Food Fertility, LLC and consults on a food resilience project with the Oregon Health Authority (OHA) addressing the effects of both natural and non-natural disasters (including climate change) on food systems.

In addition to her current role as a volunteer leader for FORCE, Briana was a 4-H volunteer for over 17 years and served in the Peace Corps as a sustainable agriculture systems development specialist in Panama. She holds a BS in animal sciences from Washington State University and an MPH in environmental systems and human health from Oregon Health and Science University.

Of her experience supporting others dealing with HBOC, Briana said, “I’m glad that I can help others through my role with FORCE. It is very rewarding being able to connect fellow travelers with resources and provide support.”

Regarding her own health journey, genetic testing, and prevention, Briana commented,

I feel very satisfied with where I have directed my life and feel very thankful for what I have. While I can never outright ignore my health and cancer risk, the anxiety it used to cause me has eased into something that feels manageable. I’m able to enjoy life even though I have this insane risk. I suppose in a way the weight of it feels less burdensome. Maybe because of social support, maybe because I’ve had more time to process the hereditary risk I carry, maybe because of therapy. Probably a little bit of everything.

Individuals seeking support in dealing with a hereditary cancer diagnosis, treatment options, and prevention in the Portland, Oregon area can email Briana at briana@facingourrisk.org.

Those living outside of Oregon can access the FORCE local outreach network to find support in communities around the U.S. and in the UK, sign up for the peer navigation program, or visit the FORCE website for additional resources.

Choices: Her Body, Her Future

Emmy-nominated director and producer Joanna Rudnick interviewed Mary-Claire King, the scientist who discovered the BRCA 1 mutation, in her documentary film In the Family. Dr. King compared the psychological state of individuals with a known genetic predisposition to cancer to that of cancer survivors, explaining that such knowledge may come with persistent, ongoing fears of a diagnosis. FORCE coined the term previvor in 2000 to capture the “unique needs and concerns” of high-risk individuals that are distinct from the general population, “but different from those already diagnosed with cancer.”

Some of these concerns include decisions on risk-reducing prophylactic surgeries, such as prophylactic bilateral mastectomy (PBM) and bilateral salpingo-oophorectomy (BSO). While considered extreme by some, the reduction in risk is significant: it produces at least a 50 percent reduction in risk for breast cancer and up to 96 percent reduction for ovarian cancer in BRCA individuals. What’s more, according to the NIH, “Hereditary breast cancers tend to develop earlier in life than noninherited (sporadic) cases, and new (primary) tumors are more likely to develop in both breasts.”

As cancers due to inherited genetic mutations are associated with more aggressive forms of the disease and a younger age of onset, these surgical options can be life-saving. Such procedures are not without consequences, however. There are significant physical and psychological ramifications that require careful consideration and planning, especially with regard to dating, sex, marriage, childbearing, and menopause. Seeking the support of a genetic counselor or other trusted medical professional is vital.

Briana described her thinking with regards to prophylactic risk-reducing surgery:

Before I even got tested when I was 21, I knew that if it came back positive I would undergo the surgery. I would undergo any recommended procedure (within reason) to save myself from the sickness and death of my mother that I witnessed as a child.

Even with such a clear mindset, Briana was overwhelmed with the reality of her situation and the decisions with which she was faced when she learned of her risk in 2012. She found support in the FORCE community while still in college, and when she returned from the Peace Corps in 2016, she attended the Joining Forces Conference in Orlando. This led to her decision to have a prophylactic bilateral mastectomy (PBM) in 2017. FORCE connected her with the knowledge, emotional support, and financial resources she needed. She shared,

I had been told that doctors wouldn’t perform a PBM until I turned 25. As soon as I turned 25 this switch flipped in my mind, and I felt like I was a ticking time bomb. Any pain or bump sent me into a panic. But, I was in Panama with the Peace Corps at the time and wanted to finish that experience. 

When I was 26 I came back to the US and got a good job with private insurance … [I] waited as long as I could to save up some money and find the right doctors to do the procedure.

About how her cancer risk felt post-mastectomy, Briana shared,

After the PBM, a great weight lifted from me. I didn’t even know how heavy the burden had gotten. I wondered what it would be like to never carry this weight. If the PBM provided that much of a relief, how much more relief could I feel if I never had to deal with any of this again? 

Briana spoke to a doctor about her ovarian cancer risk at the most recent Joining Forces conference in San Diego in 2018, who recommended that she begin thinking about ovarian cancer prophylactic surgery. This typically involves a bilateral salpingo-oophorectomy (BSO), the removal of the ovaries and fallopian tubes. Briana reflected on the dilemma this presents, especially for young women:

My mom was diagnosed with ovarian cancer at 43, and with cancer diagnosis occurring about a decade sooner for young women than the previous generation, it’s on my mind. I’ll turn 33 in less than five years, and it’s hard to think that I could have to decide about the future of my health over having kids.

Supporting Others on the Path: The Important Work of Facing Our Risk of Cancer Empowered (FORCE)

Briana joined FORCE’s volunteer team shortly after returning from the Peace Corps in a leadership role. She commented on how difficult it was being the youngest person at all of the FORCE events and decided that, as a volunteer leader, she could provide a different outlook and create a more inclusive space for younger women.

Briana has now served in a volunteer leadership position with FORCE for four years. She began as a peer support group leader for the Portland area, overseeing fundraising efforts and social group gatherings. Her role has since changed, and she is now a volunteer outreach leader. Her role entails partnering with local medical professionals to organize quarterly health-focused meetings for individuals facing hereditary cancer syndromes. The other aspect of this work involves connecting individuals and families facing hereditary cancers to health, financial, and emotional support resources. Briana also acts as a local liaison for research initiatives partnering with FORCE.

Some examples of the kind of support Briana has provided include:

  • Finding an acupuncturist for scar therapy with experience working with women who have had mastectomies
  • Recommending massage therapists
  • Finding financial resources like travel or medical grants for treatment and conference attendance
  • Suggesting doctors familiar with hereditary cancer for those new to town
  • Providing information on in-vitro fertilization
  • Explaining insurance policies and concerns
  • Connecting people with resources that match their cultural background, such as the Ashkenazi Jewish community, which has a higher risk of some of the mutations than the general population.

Briana also emphasized the importance of reaching out to individuals affected by lesser-known mutations:

I hope that people understand, especially now with more information out there, that it’s not just a BRCA 1 and 2 community, that there is support for everybody going through hereditary cancer. Even if FORCE doesn’t have the support for everyone that needs it, there is a big community of support out there … We can usually find the support that someone is looking for.

Navigating Hereditary Cancer Syndrome in the Midst of the Pandemic

Covid-19 has placed a burden on our healthcare system, presenting significant challenges for cancer patients receiving treatment or in the midst of diagnosis as well as those at high-risk for the disease.

The American Society of Clinical Oncology (ASCO) put out a special report in May: A Guide to Cancer Care Delivery During the Pandemic describing how oncology practices can protect the safety of patients and healthcare staff in the midst of Covid-19. They have also compiled disease-specific resources providing guidance on the care of individuals fighting different kinds of cancer with age-related considerations for geriatric and pediatric cancer patients.

The pandemic has obligated cancer patients and oncology medical staff to take risks entering hospitals and other clinical care settings in the course of their treatment and daily work. For some, like 19-year-old pancreatic cancer survivor Bella Graham, going to places like the grocery store presents a risk. Encountering community members not taking recommendations seriously or objecting to the precautions she takes for herself in public has been frustrating, creating more fear. In an article published on the Pancreatic Cancer Action Network website, Bella said

We have to be community-minded … The only way we beat COVID-19 is if we care about people who are not in our family, who are not our friends, who we don’t know. It may not be your mom or your kid, but it’s somebody’s mom. It’s somebody’s kid.

In addition to these stressors, newly diagnosed patients, survivors, and individuals at high-risk may have had to postpone diagnosis and staging or screening and surveillance measures during the quarantine. The “related cancers” associated with HBOC (hereditary breast, ovarian, and related cancer syndrome) include fallopian tube, peritoneal, and pancreatic cancer, and in some cases colorectal and melanoma. Men with BRCA 1 are also at a heightened risk for breast as well as prostate cancer. What this adds up to is an increased need for support services and resources to navigate cancer treatment, prevention, and surveillance in the time of coronavirus.

As in the case of so many of our school, work, and personal activities, Briana shared that the last two quarterly FORCE meetings scheduled in Portland have been canceled due to Covid-19.

In the meantime, FORCE has been working hard to find the best solution for providing a secure meeting space to support members of the hereditary cancer community. They have developed a virtual meeting program that will be used to hold the upcoming meetings in Portland. Acknowledging that they don’t know when it will be safe to hold in-person meetings again, Briana emphasized the importance of staying connected: “It’s really important to provide people with resources to help them make medical decisions … I wouldn’t want people to go through this alone.”

As mentioned above, Briana was clear that this includes all individuals going through or at risk for hereditary cancer. Since the Supreme Court ruled against the patenting of genes in 2013, many more genes linked to hereditary cancer have been found in addition to BRCA 1 and 2, the most studied to date. And in the burgeoning era of population genomics, this trend is likely to continue.

Mutations with national medical guidelines for care include BRCA 1 & 2; MLH1, MSH2, MSH6, PMS2, and EPCAM (Lynch Syndrome); PALB2; ATM; CHEK2; PTEN (Cowden Syndrome); TP53 (Li-Fraumeni); CDH1; STK11 (Peutz-Jeghers Syndrome); NF1; NBN; BRIP1; RAD51C; and RAD51D.

Those without national medical guidelines for care due to lack of research include BARD1; FANCC; MRE11A; RAD50; REQL4; RET1; RINT1; SLX4; SMARCA; and XRCC2.

And still, despite these scientific advancements, there are many individuals out there from “mystery” families with strong histories of the disease but no known genetic link as of yet.

Get Support

Facing Our Risk of Cancer Empowered (FORCE)

Improving the lives of individuals and families affected by hereditary breast, ovarian, and related cancers

FORCE was started in 1999 by Executive Director Sue Friedman, a two-time breast cancer survivor first diagnosed at the age of 33. Friedman founded the organization after learning she carried the BRCA 2 mutation to offer research, advocacy, support, and information to individuals and families affected by hereditary cancers. Force’s programs focus on risk management, prevention, and awareness.

These include message boards; local support groups; a toll-free helpline; a patient-powered research registry; research recruitment; research advocate training; an ovarian cancer risk assessment portal; a CDC-funded breast cancer news media coverage analysis; webinars; a post-mastectomy photo gallery; the Joining Forces Conference; an information database; and public policy and access-to-care advocacy programs.

Visit FORCE’s “Covid-19 Considerations for the Cancer Community” and “Coping with Hereditary Cancer During the COVID-19 Pandemic” pages to find articles, webinars, resources, and other informational content on cancer treatment and screening during the pandemic. Their XRAY review explores the intersection of Covid-19 and cancer with regards to immunosuppression, dealing with disruption to surveillance or treatment, and understanding media sources.

Other Support Organizations:

  • Bright Pink
  • Impact Melanoma
  • Pancreatic Cancer Action Network
  • Prostate Cancer Foundation
  • Sharsheret
  • Susan G. Komen

Information on Cancer and Covid-19

  • American Cancer Society (ACS)
  • American Institute of Cancer Research (AICR)
  • Cancer Support Community (CSC)
  • Cancer Treatment Centers of America
  • Intercultural Cancer Council (ICC)
  • Prevent Cancer Foundation
  • Native American Cancer Research Corporation
  • NIH National Cancer Institute (NCI)
Cevia Yellin

Cevia Yellin

Writer

Cevia Yellin is a freelance writer based in Eugene, Oregon. She studied English and French literature as an undergraduate. After serving two years as an AmeriCorps volunteer, she earned her master of arts in teaching English to speakers of other languages. Cevia’s travels and experiences working with students of diverse linguistic and cultural backgrounds have contributed to her interest in the forces that shape identity. She grew up on the edge of Philadelphia, where her mom still lives in her childhood home.