1999-2015 CELEBRATING 16 YEARS AS THE IBC PATIENT VOICE IN THE RESEARCH COMMUNITY

Writing About Cancer

by Anya Silver


I have considered myself a poet since reading Tennyson’s poem “The Lady of Shalott” in eleventh grade English class and deciding that I wanted to do what Tennyson did: make magic weavings out of words. For years, I wrote about what mattered in my life: my childhood, family and romantic relationships, the glories of the natural world, and my faith. Looking back, most of my poetry was mediocre. I clearly hadn’t found my true subject.

Then came cancer.

When I was diagnosed with inflammatory breast cancer in 2004, I was thirty five years old and pregnant. I had always been healthy, but had suffered two miscarriages in the past year, one of them very late and traumatic. Now, I faced losing my own life at a time when I was supposed to focus on bringing new life into the world. 

I underwent aggressive chemotherapy treatment while pregnant, was induced into labor a month early, and then completed chemotherapy and had radiation while tending my newborn son. 

After being in remission for over five years, I had a recurrence of IBC in my sternum in 2010, and for the last five and a half years, have been living with metastatic, or Stage IV, cancer. My son is eleven years old and healthy.

Everybody copes with the devastating diagnosis of cancer differently. For me, the most natural response was to write about it. I was unable to write much during the initial treatments, both because of fatigue and because I was emotionally overwhelmed by treatment. The poet Wordsworth believed that poetry “takes its origin from emotion recollected in tranquility.” I needed some distance from my diagnosis in order to write about my experiences. However, once I began to write poems about cancer, I couldn’t stop. I have been writing about life with cancer ever since. I have found my subject-or rather, my subject found me. 

I am often asked why I write poetry about cancer, which is, as one reader told me, “so depressing.” I write to make meaning out of my life. Cancer strikes me as intrinsically random and meaningless. We can not accurately predict who will get breast cancer or who will die from it, or when. Cancer brings chaos into one’s life. Writing about cancer, on the other hand, gives me a sense of control over my life. By writing about cancer, I can take away some of its power over me. I can’t control my cancer, but I can control how I react to it. Writing is a craft. Like any craft or practice (pottery, building model trains, painting, knitting, baking), careful attention to a process gives one the sense that one is doing something productive and useful, and creating order and meaning in the world. Writing about cancer is a vocation. 

Second, I write to better understand myself. Writing, like prayer, is a form of attention and meditation. When I write, I explore my own feelings, and the expression of those feelings is both a relief and a way to know myself better.

Third, I write to share my experiences with others, both those with cancer and those without. I want people with cancer to know that they are not alone, and I want people without cancer to know what, from my perspective, that experience is like. Cancer is a complex disease, and it evokes complex responses.

I strongly recommend that women with cancer write about their experiences, whether or not they consider themselves writers, and whether or not they plan to make their writing public. Keeping a journal is an excellent way for women to express-and therefore own and exorcise-their greatest fears and anxieties. During a decision-making process (whether or not to switch treatments, for example), writing about the various pros and cons of different choices helps one reflect upon and make better decisions. A diary can be used as a tool for a journey inward that helps one better understand oneself and one’s experiences. 

There have been many memoirs by breast cancer survivors and those living with cancer. However, every experience is different, and we all have our own stories to share. Whether you start a blog, write an essay about your experiences for your church bulletin or a breast cancer organization, give a speech, or write in a literary form such as fiction, poetry, or drama, you have something unique to say. Don’t worry that you’re not a good enough writer. Just write. 

Several years ago, a dear friend and I named our cancers. Her cancer was named Midge and mine was Madge. I expect that, some day, Madge will bring my life on earth to an end. But now, Madge is my subject. She will not control my life. I will not let her. By writing about cancer, I empower myself and my life. I am more than cancer: I am a woman, mother, wife, and poet.

[Editor’s note: Anya Silver is the author of two books of poetry, I Watched You Disappear (2014) and The Ninety-Third Name of God (2010), both from the Louisiana State University Press. She was named Georgia Author of the Year/Poetry for 2015. She is a professor of English at Mercer University and lives with her husband and son in Macon, Georgia. Anya has been living with inflammatory breast cancer since 2004.]

To read more IBC stories of hope, help and memories, visit the IBC In Our Own Words page. To contribute your IBC journey to the page,contact the newsletter editor.

American Society of Clinical Oncology (ASCO) 2015

by Ginny Mason, Executive Director

photo of Ginny MasonI’ve heard it said that more ‘important work’ goes on in hallways rather than at the official presentations at meetings like ASCO. Having spent five hectic days in Chicago attending the 2015 Annual Meeting, I would agree with that statement!! From very early in the morning until late at night there are dozens of sessions to attend but it’s those face to face opportunities to connect, that help cement working relationships. 

Activity started with a pre-conference meeting of the SystHERs RegistrySteering Committee where I, along with Musa Mayer, represent the patient voice in this registry project collecting data on Her2 positive metastatic breast cancer patients. The steering committee also includes breast oncologists and representatives from the sponsor, Genentech.

Knowing that immunotherapy would be the buzzword for this year’s meeting I participated in a four-hour training provided by the Society for Immunotherapy of Cancer (SITC). This is a complicated subject and we’ll be addressing this more in upcoming issues, so stay tuned. Immunotherapy is slowly making it’s way into breast cancer.

ASCO covers all types of cancer and while I focus primarily on breast cancer I went to presentations and posters on biomarkers, metastasis, emerging therapies, and general sessions. There were no IBC specific presentations just some posters. Dr. Overmoyer and colleagues of Dana Farber Cancer Institute had a poster on triple-negative IBC treatment and one on risk factors. (P6-10-08 & P6-14- 09). M.D. Anderson colleagues had two posters on Her2 positive IBC treatment (P6-14-01 & P6-14-07) and Dr. Cristofanilli and colleagues had two posters on genomic profiling and migration and invasion in IBC (P6-14-02 & P6-14–6). There were three additional posters listed but not all were posted for viewing. In addition there are some IBC poster abstracts only available on-line as e-abstracts. You can search the ASCO Annual Meeting Abstracts at http://bit.ly/1H4qqmp to read full abstracts. Other resources are available on the ASCO Annual Meeting website as well.

Websites such as Practice Update, Medscape, and Cancer Therapy Advisor provide good overviews of the main topics from the conference if you’re interested in overviews. And ASCO provides a Research Roundup: News for Patients from the ASCO 2015 Annual Meeting. The breast cancer section begins on page 6. 
image of twitter stream
Vital Options International hosted two programs during ASCO focused on topics important to the broader cancer population. I was able to participate in “Right Patient. Right Treatment. Right Now!” a session on the challenges associated with innovation in treatment. Check out the @IBCResearch tweets from this program on the “tweet beam” screen!

Special thanks to the Conquer Cancer Foundation for the scholarship that covered my expenses to attend this year’s Annual Meeting. As a scholarship recipient I was asked to share my thanks in a filmed statement to encourage support of this philanthropic arm of ASCO. Who knows where my face and IBC message are going to show up!!

Get Help Understanding How the Research Affects You

by Phyllis Johnson

photo of Phyllis Johnson[Editor’s note] Board of Directors member, Phyllis Johnson, writes regularly for HealthCentral.com. Below is an excerpt from her December 18, 2014 article: 

“Every December thousands of researchers and medical professionals from all over the world pour in to San Antonio, Texas, for the San Antonio Breast Cancer Symposium (SABCS). They share their findings about breast cancer and its treatments in technical, medical language, which will be translated into every day language for consumers in a flood of news reports. Swimming through that flood is a challenge. How can you tell if any of the San Antonio news is relevant to you? Most of us will need to rely on our doctors to help us sort it out. Here is why. Much of the news is relevant to small sub-groups of breast cancer patients. It used to be that all you needed to know was the hormone receptor and Her2 status of your tumor. Much of the new research deals with characteristics of tumors that aren’t even being tested in most doctor’s offices. Breast cancer is a collection of diseases, not just one, so a research report that sounds promising in a headline may not be for you.

Read the complete article.

High School Junior Studies IBC as Research Intern

doctor mark dewhirst and Arjun aroraA recent Duke Cancer Institute blog story featured Arjun Jay Arora, a high school junior who over the course of the past year interned at Duke and focused his research on inflammatory breast cancer (IBC). This may not come as a surprise since his mother Gayathri Devi, PhD, Associate Professor with the Departments of Surgery and Pathology at Duke Cancer Institute has been studying IBC for some time.

The photo shows Arjun with his mentor, Dr. Mark Dewhirst. That name should sound familiar to our readers. Dr. Dewhirst received the Kathleen Livingston Memorial Grant in 2013, from the IBC Research Foundation, to study the mechanisms associated with skin metastasis of IBC.

While Arora didn’t start out in Dr. Dewhirst’s lab, he seems to have found his niche there having lost someone “very dear” to metastatic 
breast cancer. His work has given him opportunities beyond the lab and has fueled his desire to continue this path.

“I’ve grown up in Duke’s backyard,” he said. “Having conducted research at Duke it’s become one of my dream schools. I’d like to pursue biomedical sciences. Perhaps I will be able to pair those studies with public policy, which would then enable me to put to use my passion for writing. I am truly grateful for Dr. Dewhirst’s support, mentorship and inspiration. My experiences this year have exceeded anything I could have imagined.”

Read more about Arjun Jay Arora and his research at Duke.

Free Evidence-Based Health Care Course Offered by Johns Hopkins

Musa Mayer and Kay Dickersin
Musa Mayer, Kay Dickersin

Designed by Kay Dickersin and Musa Mayer, the goal of the course is to help consumer advocates understand the fundamentals of evidence-based healthcare concepts and skills.

We are working to engage patients and consumers as full partners in this new model for health care,” said Kay Dickersin, PhD, a professor in the Bloomberg School of Public Health’s Department of Epidemiology and director of the U.S. Cochrane Center. “We want consumer advocates to successfully navigate the world of medical information and be able to critically assess results from research studies….”

“Every day, an overwhelming amount of health care information appears in the media,” said Mayer, founder of AdvancedBC.org and noted consumer advocate. “Much is oversimplification or outright marketing. Consumer advocates may be forced to rely on media reports, if they don’t know how to find or recognize high-quality research evidence.We want advocates to have the tools they need to understand how scientific research is conducted and how real advances in medicine are actually made. Whether advocates are helping people to make difficult health care decisions, sitting at tables where scientific and research decisions are made or trying to influence public policy, learning these skills will empower all of our work.”

Registration is open and free of charge. 

For more information and to register:
http://us.cochrane.org/understanding-evidence-based- healthcare-foundation-action

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