Why Your Voice Saves Lives: Participation in Breast Cancer Research and Virtual Peer Groups

I owe a tremendous amount of gratitude to patients and other participants in breast cancer research; to those who took part in important studies that eventually translated into marketable therapies. Of course I’ve mixed feelings regarding the enormous financial gains made by what now we call the “cancer industry” versus the sky-high cost of care in the United States, where people die because the cost of treatment and the lack of funding for providing those treatments. Reprehensible profiteering on the lives patients, their families, friends and their caregivers makes me feel more nauseous than chemo. However, it’s also very difficult not to participate in current studies both to receive the possible benefit and to show my deep appreciation. The gratitude to those who continue to provide new therapies of all types not only the profitable pharmaceutical companies. I’m addressing specifically the indebtedness I feel for those selflessly gave us the gift of their time, bodies and spirits so that I and others might stay alive longer. (As for any cancer diagnosis but especially after a stage IV cancer diagnosis.) It’s our lives that preserve their legacies. Prior to so many breakthroughs stemming from research in breast cancer, I’d have received an extremely bleak prognosis upon presenting de novo with hormone receptor positive metastatic breast cancer in March of 2015.

The Legacy of Research Participation

Today I continue to live and to thrive because those breakthroughs brought to market important new medications or combined therapies such as Faslodex and IbrancePALOMA study of Ibrance plus Faslodex. The PALOMA-3 study’s findings was very recently published in 2016. The findings published nearly simultaneously to my decision to utilize Stanford Cancer Center and change my oncology team were immediately put to work in my body. The median mortality expectancy for metastatic breast cancer passed months ago in no small part due to the women who participated in this study gave me their lives so that I could extend mine.

How do I thank them? Participation in further studies and with daily gratitude to those still with us and those who succumbed to metastatic disease, for which we have no cure. (As of this blog post, MBC receives a mere 7% of all funding for breast cancer research. Ask any person with MBC. She knows this statistic well. And if she doesn’t it’s simply because she’s recently diagnosed and still in shock.) When a study comes to my attention for which I am a good candidate, I put myself forward. So far I’ve not been able to take part in a drug or chemotherapeutic research program. Fortunately, studies do not always include the physical aspects of cancer treatment including medications, machines, and chemotherapeutic protocols. Advancements in research wouldn’t be possible if not for those who participated – most of those good hearts long gone. I‘m committed participating in studies for which I’m a good fit; I view it as a fundamental part of my legacy including writing. Additionally, recent studies include writing and it’s therapeutic benefits with cancer patients as well as libraries of online story banks meant to preserve the true legacy of a person’s odyssey. These stories help those who inevitably will find themselves with the shock of the life altering words, “I’m so sorry, but it’s cancer.”

How to Find Studies

Psychosocial and long term health studies such as Dr. Susan Love’s breast cancer research portal and the Army of Women, help to enrich the extended oncology community’s understanding of the full extent of how cancer effects our lives. This included questionnaire style research in the Health of Women HOW study . Research such as this have my full participation when I’m tapped on the shoulder or I stumble onto one through social media, research portals such as the National Institute of Health’s Moonshot Initiative , as well as through the network of people in the metastatic breast cancer community.

You can find our network all over the internet. Our network is made up primarily of women, and albeit a small group, we are a vocal group. Try doing a quick Twitter search on the hashtags #metastaticBC or #stage4needsmore or any other breast cancer related keywords. If you’ve never done so, I encourage you to participate in these conversations. Questions, answers, musings, scheduled Twitter chats, and new friends await you with open arms. There’s a lot of virtual love to tap into that can become a safe haven when our disease becomes a heavy emotional and physical load. Facebook, Instagram, and other social sites include photos, quotes, inspiration, and many other links to help when you may need it. Sometimes just putting a question out to a group will bring you answers and assistance you need to find a better solution to a problem or encouragement when you’re in need.

Writing for My Life

In offerings of possible help and the advantage of my hindsight and experiences, writing is my second most rewarding and therapeutic activity. I encourage friends and acquaintances to participate in research and to write. Write privately or publicly. Write in short form on your computer or in a hand written diary. In navigating your experience, the information about yourself and whomever travels along this rocky path becomes an invaluable tool in self advocacy. I cannot put a price on my writing out my life in black and white. I’d not have the benefit and positive self-encouragement in seeing the positive changes in myself over three years and eight months since diagnosis.

Learning to love myself and understanding the true definition of gratitude came to me with a very high price tag. However, if my life and my legacy helps in any way my peers as well as those who will unfortunately, inevitably be diagnosed after I’m long gone, then it’s a life well lived. It’s also a life I can be proud of and grateful for having lived. I’ll be 54 next year – my diagnosis came just three short months shy of my 50th birthday, at 49. I’m beating the odds, though beating them is fatiguing and emotionally charged at times. That aside, if you read this, and I hope, take away one key point, that is participate. Participate as you feel you can and in which studies and write as much you feel comfortable. The life you save may be your own (or your daughter’s, or your best friend’s, or a stranger who thanks you in her daily gratitude ritual, like me.)