October’s Arrived, So I’m on My Soapbox

Credit: benefits.com

I didn’t know how I was going to write about Breast Cancer Awareness Month this year, and then I saw this message on Facebook, posted by a guy I knew in high school:

Lost my mother, grandmother (and both her sisters) and great grandmother to breast cancer. I get checked every year by my doctor.

#getchecked

#protectthetattas

I immediately sent him a private message: “Have you had genetic testing for BRCA and other mutations?”

Guy: “My brother has since he had daughters. Was negative. But he and I are vastly diff makeups. He’s def from my father’s DNA. And I’m sure I’m more my mother’s. Never got tested since I only had boys.”

I couldn’t have asked for a better set-up!

Me: “You should consider consulting with a genetic counselor because men, not only women, can pass mutations on to their children. So, if you carry a hereditary cancer mutation, each of your sons has a 50% chance of carrying it—and a 50% chance of passing it on to their own kids, both sons and daughters. Happy to discuss further if that would be helpful. I’ve learned all of this the hard way, and I work hard to make sure other families don’t have the experiences that mine did. Also, some of these mutations are much more prevalent among Ashkenazi Jews than they are in the general population. I’ll also butt out if you think this is none of my business.” 

Guy: “I appreciate it! I will pursue it further.”

Me: “Excellent! Please keep me posted.”  

If, in fact, Guy or either of his sons turns out to be a BRCA mutation carrier (pfth, pfth, pfth), they’re at increased risk of male breast cancer, prostate cancer, pancreatic cancer, and melanoma. So, I hope he follows through, gets genetic counseling, and does whatever might be necessary to protect his own health and that of his sons.

To learn more about hereditary cancer, visit FORCE: Facing Our Risk of Cancer Empowered, a national non-profit organization solely devoted to providing resources and support to the hereditary cancer community. To find a genetic counselor in your area, visit the National Society of Genetic Counselors. Visit JScreen.org to learn how you can test for hereditary cancer mutations from home and consult with a genetic counselor about the results.

Why I Keep Telling My BRCA Story

Recently, I was invited to write about my BRCA journey for Invitae, a genetic information company, as part of a campaign to inform and inspire people to understand the impact of hereditary breast cancer. The hope is that these stories will jump-start a Facebook conversation about hereditary cancer.

In recognition of Hereditary Breast and Ovarian Cancer (HBOC) Week, which bridges ovarian cancer awareness month in September with breast cancer awareness month in October, I am pleased to share the piece I wrote for Invitae.

Although I tell my BRCA story again and again, it never seems to get old. There are always new people to hear it, and its potential to change the trajectory of just one person’s life makes the telling and the retelling – and all the sharing – worth it.

On the Soapbox...Again!

As we reach the middle of "Pinktober," I'm grateful for the opportunity, once again, to stand atop my BRCA-awareness soapbox, this time to discuss the recent press about whether or not all Ashkenazi Jews should be tested for BRCA 1/2 mutations.

Check out my latest post over at ReformJudaism.org.

The Army of Women Needs You!

I want you! 

You’d have to be living under a rock not to know that October is Breast Cancer Awareness Month.  You might not know, though, that this past Thursday, October 13, was Metastatic Breast Cancer Awareness Day.  In the interest of full disclosure, I didn’t know it either until I saw it on the Facebook page of the Army of Women.   According to its website, the Dr. Susan Love Research Foundation's Love/Avon Army of Women has two key goals:

• To recruit one million healthy women of every age and ethnicity, including breast cancer survivors and women at high-risk for the disease, to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all.
• To challenge the scientific community to expand its current focus to include breast cancer prevention research conducted on healthy women.

In an effort to build a strong voice among researchers and those affected by breast cancer, the Army of Women has launched the The “It Takes an Army” Project, a collection of videos and stories of being touched by breast cancer from its cadre of volunteers. Specifically, the Project asks participants to reflect on these two “distinct moments of realization: When was the moment you knew breast cancer had changed your life? And when was the moment you knew your life could change breast cancer?”

Here’s my submission…

May 9, 2010 was Mother's Day.  As I filled the vase with water from the sink in my mother's hospital room for the flowers we'd brought for her, I knew--I mean I really knew--it was the last Mother's Day we'd spend together.  Her oncologist wanted us to believe otherwise, but what he said didn't synch with the lightning-speed decline we'd been watching everyday for the last five weeks.  My mom had triple negative metastatic breast cancer and 10 days later, she was in hospice.  On May 30, she died, changing my life forever.

November 2, 2010 was Election Day.  A friend accompanied me to my appointment to meet with the Chief of the Clinical Genetics Service at Memorial Sloan-Kettering Cancer Center and one of the genetic counselors on his staff.  Several weeks earlier, my sister and I had tested for the BRCA gene mutations and, although she had tested negative, I had learned that I'm positive (as we surmise my mother was) for a BRCA2 mutation that significantly increases my lifetime risk of both breast and ovarian cancer.  As much as I already knew my options, I needed to hear them—I mean really hear them—from people who knew what they were talking about.  At the end of the appointment, at the counselor’s request, I signed paperwork and gave blood to participate in one of many long-term studies underway at Sloan-Kettering.  (I’ve since signed on to several others.)  If there’s even a remote possibility that my mutated genes can provide a teeny-tiny clue to doctors seeking a cure for breast cancer, I say, “go for it!” I am proud and honored to play a role in this work.

*     *     *

Although I’m off the hook for a mammogram (I had a prophylactic bilateral mastectomy in July), if you’re a woman over 40 and haven’t had one in the last 12 months, run, do not walk, to the phone to make an appointment.  It could save your life.

It’s That Time of Year Again

Unless you’ve been living under a rock for the last three weeks, you’re probably aware that October is Breast Cancer Awareness Month.  By coincidence, it’s also the month in which my own mammogram appointment always falls.  Shortly after last year’s test, I wrote this short piece about my experience.

This year’s appointment is set for tomorrow morning, and, needless to say, things are a bit different for me now.  In addition to the usual mammogram, I’m also scheduled for a sonogram and an ultrasound.  Of course, I’m thankful for the technology that makes these tests possible, but I'm certainly no Pollyanna when it comes to this disease, even when a mammogram detects it early.

Nonetheless, if you’re between 35 and 40 and have never had a mammogram, schedule one today.  If you’re over 40 and it’s been more than a year since your last one, do the same thing.  Do not delay, do not pass go, and do not collect $200.  You owe it to yourself and the people you love.

Time Well Spent

Like many people, my inbox gets cluttered with plenty of bad jokes, most of which I delete soon after they arrive. This one, though, a list of practice exercises women can do to prepare for a mammogram, always brings me a chuckle:

Exercise #1: Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Smash the bookends together as hard as you can. Repeat with the other breast. Set an appointment with the stranger to meet next year and do it again.

Exercise #2 Open your refrigerator door and insert one breast between the door and the main box. Have one of your strongest friends slam the door shut as hard as possible and lean on the door for good measure. Hold that position for five seconds. Do this again in case the last time wasn't effective enough. Then repeat with the other breast.

Exercise #3 Visit your garage at 3 a.m. when the temperature of the concrete floor is just perfect. Take off all your warm clothes and lay comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until the breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.

This morning, I went for the real thing and, as usual, it was no big deal. My appointment at the radiology center was for 7:30 a.m. and by 8 a.m., I was finished and headed to the office. Sure, it’s uncomfortable for a few seconds, while you get squished between those cold metal plates, but when you consider the life-saving potential of those plates and the images they capture, it’s really time well spent.