An extra element of stress has creeped into all our lives. We’ve made way for the coronavirus to take the foreground–adjusting our work, family, and social lives to fit into society’s larger efforts to curb this wild pandemic.
This is a natural response. It’s imperative that we keep ourselves and loved ones healthy. We’ve been in triage-mode. So now that we’re a few weeks into social distancing, and settling into toilet paper jokes and binge-watching weird documentaries, our regular old stressors have been making their way back into the picture.
For me, and thousands of other people, that means our BRCA status is demanding a little more attention. BRCA1 and BRCA2 related hereditary cancer susceptibility affect roughly 1 in 400 people. These gene mutations significantly increase the risk of breast, ovarian, prostate, and pancreatic cancers. Extra precautions and care management are a part of a BRCA carrier’s health plan, including increased screenings and/or preventative surgeries.
And I am one of the lucky ones, I have not developed cancer. I’m in-between preventative surgeries, my next breast screening is months away, and I’m healthy. I even work for a non-profit that deals with hereditary cancer. But that hasn’t stopped my worries from resurfacing.
What happens if I find a lump during my monthly breast exam? (OK, weekly–sometimes daily-exam.)
Now that my ovaries are out, and I rely on estrogen replacement therapy for bone, heart, and brain health, will I have enough hormones to last me through the weeks and possibly months?
I’ve been feeling weak since surgical menopause, should I be getting a bone density test?
I still haven’t made an appointment with a dermatologist, what if that weird mole is melanoma? (BRCA carriers have a slight increase in developing skin cancers, too. Especially BRCA2.)
Will this last until July, when I’m supposed to have another breast screening?
And the big question on most BRCA patients’ brains: WHAT IF I HAVE CANCER?
I reached out to Cobie S. Whitten, PhD, a psycho-oncology consultant, to gather some advice on dealing with this distinct double-dip stressor:
“For those who already live with uncertainty, these extraordinary times offer new challenges. For those living with hereditary risk for cancer, the increased isolation and increased time to process can also feel overwhelming. The urgency of the virus pandemic is real *and* so are concerns about one’s health and well-being beyond the virus. Acknowledging that we may be experiencing all things all at once and not judging ourselves and our loved ones can lead to more compassion – for ourselves and others. There is assistance available, even now in the midst of this pandemic, to address cancer-related concerns. It is more important than ever to stay connected, get evidence-based information and support, and learn how to advocate for yourself and your loved ones.”
Dr. Whitten strikes a chord with me, specifically the bolded part. I was struggling with feeling guilty about my BRCA concerns while there’s obviously more urgent concerns happening in the world. Her words let me know it’s OK for these stressors to exist simultaneously, and it matters that we find the right people and resources to cope with it all.
As I have been processing my own thoughts and concerns about my situation, I have been thinking so much about those who need to go to hospitals and clinics for care at this time; those who are getting new cancer diagnosis or are undergoing treatment for cancer. I think Dr. Whitten’s advice extends to them as well; stay connected, present, and educated.
Working for the Genetic Support Foundation, I can see first-hand into the healthcare systems as people become displaced while COVID takes the stage. I feel for those who are in the midst of cancer treatments and are unable to see a genetic counselor to help determine next steps for treatment or prevention. I’m concerned about the growing number of women whose “elective” surgeries are being put on hold. Thankfully, our counselors are well-versed in Telehealth and can continue to see patients online and can facilitate mailed testing from reputable labs.
My intent in writing this is to let others know they are not alone and that there are resources out there. Stay strong, BRCA warriors, together we can do this.