Pinktober Guest Post: Katherine O’Brien

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am going to be running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

This post is by Katherine O’Brien. Katherine has been living with metastatic breast cancer since 2009. In addition to editing a trade magazine for commercial printers she blogs at I Hate Breast Cancer. Please give her some comment love, and don’t forget to visit her blog!

Katherine O'BrienI am the youngest of seven siblings—as you might guess, I grew up in a big Irish Catholic family. My mom converted to Catholicism prior to meeting my father. Her family was Jewish but not very religious. Although my mom was very funny, she was quiet and almost never spoke about herself.  (I’ve told Mom’s  story here.)

When I was 15, my mom was diagnosed with inflammatory breast cancer. This was in 1981 so there was no Internet and very little information or support for patients. I remember the American Cancer Society volunteer came to our house with a foob after my mom’s mastectomy. But the Komen organization wasn’t launched until 1982, so this was about a decade before Breast Cancer Awareness Month achieved its massive place in the public consciousness, thanks largely to SELF magazine.

My mom died in 1983, a few weeks after my high school graduation.  I can’t recall the treatments she had—I know she had radiation and chemo and sometimes she was hospitalized to get chemo. Treatments in those days were truly brutal. The drugs we are given today are no less toxic, I would guess the difference is anti-emetics have improved.

Sadly outcomes really haven’t. The number of US  women and men who die each year of breast cancer is still approximately 40,000—a number that has not changed much in the last 20 years.

Prior to my own diagnosis in 2009, I never participated in a breast cancer walk—I don’t recall going out of my way to buy pink ribbon merchandise, either.  If I felt anything, it was resentment—my mom died at 53. Seeing the joyous marchers with their wacky pink outfits didn’t inspire me. It made me think of a disease I had pushed far from my mind and all of the things it had taken from me.

I assumed all of the breast cancer awareness groups were one entity. I didn’t realize there was Komen, Avon, Y-Me (now defunct) and other groups. I also was confident I wouldn’t get breast cancer.

I also assumed my mom’s cancer had something to do with having her children later in life. I somehow DID know that people of Ashkenazi Jewish descent are at a higher risk for breast and ovarian cancers, but I reasoned that since most cancer isn’t hereditary, my mom’s probably wasn’t.  Also—given that my breasts had the general contours of two eggs, sunny side up, I figured I was safe. How could I get breast cancer? I hardly had any breasts.

I was “too busy” to get a mammogram at age 40. The truth is that I was probably afraid to go.  I finally went at age 43…I didn’t have any symptoms or anything.

Eventually I was sent for a battery of tests in preparation for a mastectomy. During one of these, a bone scan, it was found my breast cancer had escaped my breast and set up a small presence in my spine.

My cancer has remained under fairly good control. People can do well for a long time with bone-only disease.  I was on tamoxifen for two years and am currently on Femara.  Although it’s not standard of care, in some cases doctors believe surgery can be beneficial, so I had a unilateral mastectomy two years ago.

My cancer isn’t considered hereditary—I’m not a carrier of the BRCA1 or BRCA2 mutations.  My disease is ER/PR+ and HER2-. This is the most common of the three known breast cancer subtypes. Each has different signaling pathways and growth factors.  Thus, survival rates vary significantly among patients.

For one of the subtypes, triple negative metastatic breast cancer, there is no identified targeted therapy that attacks only the cancer cells.  For patients with this type of breast cancer, chemotherapy helps the disease, but patients must live with cytotoxic side effects that impact quality of life.  And, for metastatic breast cancer patients, treatment never ends.

When I was first diagnosed, I was angry about Breast Cancer Awareness Month. Volunteering with the Metastatic Breast Cancer Network (http://www.mbcn.org) has helped me channel my energies in a different, more positive direction. We just conducted our annual conference—we want people to know that they are not alone in dealing with this disease. In telling our stories, we hope to achieve better outcomes in the clinic.

National Metastatic Breast Cancer Awareness Day is October 13. Here are 13 Things Everyone Should Know About Metastatic Breast Cancer.

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