A relatively new term seems to be circulating to describe high-risk cancer patients who are proactive in determining their BRCA status and, in turn, act accordingly with surgery and/or chemoprevention.
News of Angelina Jolie’s decision and the recent Supreme Court decision has helped to give voice to this population of patients.
According to previvorsandsurvivors.com, the term “previvor" was created by FORCE (Facing Our Risk of Cancer Empowered) in 2000. Being a previvor refers to a person who does not have cancer, but who has tested positive for the BRCA gene mutation -- which puts her at an increased high risk of developing breast and/or ovarian cancer. This means she has up to an 87 percent chance of developing breast cancer in her lifetime and a 44 percent chance of developing ovarian cancer.
Previvors have their own needs and concerns separate from those who’ve already been diagnosed with cancer, which leads us to October 2, Previvor Day. This day recognizes the unique challenges faced by those at high risk for cancer.
A recent call from FORCE proved to me that as a nationally accredited breast program, we were not addressing the unique needs of high-risk patients. This has become a topic for our breast leadership committee as we search for ways to include high-risk patients into the clinic setting.
There are cases of patients identified after a biopsy indicating a need for possible chemoprevention such as atypical ductal hyperplasia, or lobular carcinoma in situ. Medical oncologists receive the referral for consultation, but these patients could benefit from routine surveillance, physical examinations, and screening for other potential cancers, a.k.a. a "previvor care plan."
Care of the previvor is inconsistent at best and not based on any national guideline at this time. Since most of the patients within this subpopulation will be young and their concerns varied, everything from fertility to life expectancy will be on the table for discussion. In the new world of breast genomics, we will begin to see patients with gene mutations and, hopefully, will have new treatment strategies to offer.
I have to wonder how the newly launched Affordable Care Act will affect these patients and whether coverage will be offered in regard to routine surveillance, etc.
Do you see high-risk patients, and do they refer to themselves as "previvors"? How will the future of genomics and the understanding of breast cancer at the molecular level change the conversation about breast cancer treatment?
- Hoskins LM, Roy KM, Greene MH Toward a new understanding of risk perception among young female BRCA1/2 "previvors". Fam Syst Health. 2012 Mar 30(1):32-46.
- GChapman JS, Powell CB, McLennan J, Crawford B, Mak J, Stewart N, Chen LM. Surveillance of survivors: follow-up after risk-reducing salpingo-oophorectomy in BRCA 1/2 mutation carriers. Gynecol Oncol. 2011 Aug 122(2):339-43.