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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13 Responses

  1. You tell your story with such grace Katherine. It was a bit of a relief to read that you were initially angered by this month of awareness. I’ll try to take your lead and channel my own energies as well. Thank you so much, and thank you Knots for sharing.

  2. Maxine D says:

    Thank you for sharing Kathryn – there are always so many facets to any one person’s journey.
    Thank you TK for this blog – I have learnt so much!
    Blessings and Prayers

  3. dglassme says:

    Thanks Kathryn, always making strides to channel the emotion.

  4. How nice to see a wonderful guest post here. I’ve been living with metastatic disease for a bit over 2 years or so now, mets to my liver. I do not find myself represented in any of the pink world, do not feel comforted or supported by a pink ribbon and see nobody with my struggles in all the media hype. I’m neither a survivor nor a warrior, I’m a person in perpetual treatment. Katherine is one of my heroes, she’s been active in getting the word out about us and I’m very grateful to her.

  5. katherinembc says:

    Thanks for all your kind words. I hope these and the other guest posts will give people more insights into a poorly misunderstood and often misrepresented disease.

  6. Katherine, It’s horribly sad, not to mention unacceptable, to realize the number of those who die every year from mbc hasn’t changed all that much. I’m glad you were able to channel your anger. Thanks for all your hard work with MBCN. Thanks for sharing your story – and your mom’s. And thanks KT for featuring this important guest posts this month.

  7. Oops, I meant for featuring these important guest posts…

  8. Susan says:

    It is so sad and frustrating that more attention is not placed on metastatic breast cancer. Knowing how little has changed with the death rates for metastatic breast cancer is very upsetting. Thank you Katherine for sharing your story and all that you do with MBCN. We have such a long way to go with this terrible disease. This was a great post to pick KT.

  9. Elizabeth J. says:

    Thank you for sharing your story. I can relate because when I was 14, I lost my grandmother to breast cancer. As a young mother, I watched my own mother fight breast cancer. (She won her fight, it never spread or returned.) So, I spent my adult life checking for lumps and went for my mammograms. Before being diagnosed with inflammatory breast cancer, I had never heard of it. I thought all breast cancer had lumps.
    After almost a year of treatment, I thought I was done, except for follow-up tests and 5 years of “my little hot-flash pill” (femara), until they found mets in my spine just a few months out of treatment. I am now newly in remission, but I know now it can always come back at any time and I’ve been told treatment is now for life, not just 5 years.
    We need to find a cure so our daughters do not deal with this and all the “awareness” and “positive attitudes” in the world will not get us there.

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