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.)

Ilene

Female. East coast transplant living in the Bay Area of California. Living with Stage IV breast cancer. Married to the coolest guy in the universe who occasionally suffers from serious depression. Love my stepsons, although I never thought I'd have that thankless job - ever! And my best friend Simon is also my cat. How I have survived with stage IV: treatments including chemo and surgery; palliative oncology; tenacity; a dark sense of humor; support groups; and my newly reinvented career as a vintage and antiques maven. Some days I miss the old me who led a well respected and well paid life as a business strategist in high tech. So much for that. I blog to simply share my experiences and my poetic approach with others who have cancer of any kind or with their care givers and those who love them. If one person at the very least finds a little commonality or a friend out in the ether tor a smile, a common nod about this experience, or even a link to assistance, then I have accomplished a small but extraordinarily meaningful goal. Go team.

10 thoughts on “Why Your Voice Saves Lives: Participation in Breast Cancer Research and Virtual Peer Groups

  1. I’ve recently started on a clinical trial here in the UK, after the treatment I was on for nearly 4 years, post Stage IV diagnosis, stopped working. I have to admit I signed up for the clinical trial for my own benefit first – because there was no suitable alternative option – so it’s good to realise that signing up for clinical trials helps others too. And I agree with you about writing, Ilene – I find it very therapeutic, along with photography and painting.

    1. Julia – along with writing I’m trying my hand at soul card collages and drawing and coloring or painting mandalas. Amazing – learning a new craft so late in life – but never too late though for a trial of any kind. The jewekry I used to make is slowly coming back to me – I picked it up about 12 years ago when my father first had his brain surgery for a huge tumor from which eventually he died. I’m glad that you are in a clinical trial I hope and pray that it works for you. But even if things turn out great or if things turn out OK or if things don’t turn out I know that you’re giving of yourself and it’s absolutely not selfish at all. In fact it’s very difficult to say that anything that we do outside of taking care of ourselves and our health is selfish…cancer takes up about 50% of my life on a daily basis but I do try and fit other things in and one of the things that I try to fit in is being grateful.

      I’m grateful to you today for giving of yourself to the betterment of others with our malady.
      🦋

  2. I am coming up on my 2 year diagnosis of breast cancer. Having people like you around to know that I am not alone helps so much. Thank you for writing.

    1. I dedicated my latest post to you. Thank you so much for the compliment – and I hope you find there are more of us out here ready to support you in any way we can.💜

    2. Please read my latest post – the ugly side I’d rather keep hidden but choose to share because your comment really got me to think about the power of not hiding behind the words but sometimes showing how it really is. I had a bad two days and through no fault of my own. And my good friend got the unenviable task of seeing me at my worst and heading to the pharmacy for me to not feel the constant pain of it all. #fuckcancer as my good blog buddy and metastatic cancer survivor likes to hashtag…and I’ve got to agree! Thank you again for prompting my latest post❤️🎗

    1. Thank you – 😘
      Well…life gets rather complicated at times. There’s this distance issue with regard to miles across the country and when one disappears so far away it seems that any old story will do in their absence, true or not. Then the three hour difference in east and west cost times, the west is a night owl and the east is a morning dove, on top of the drudgery of my insomnia. The husbands constant presence leaves little room for a private conversation, anyway. I hate sitting in the garage just to chat on the phone. Add to the scheduling challenges to my annoying chemo brain and time warping and I’m not very good at making phone calls.This is also due to various incendiary matters of family that needn’t be relived, but I will briefly note that in my early adolescence my voice delivered all the ugly emotional crap from my mother to my father over the phone. So I’m not particularly fond of calls. Phone calls don’t have the warmth of actually seeing someone in person, which isn’t always advisable or in the budget. Only my step sister has kept in touch with me from my remaining family. Everyone else either due to deceit or due to their own misjudgments over my life, out here safely on the west coast and too far to think about.

  3. I admire you immensely for sharing openly your very personal and painful experience with pen to paper.
    Your words are a wonderful source of much needed information. Your journey has and will continue to be a comfort and inspiration to many.
    I love you dearly – I admire more

    For you are my sister always ❤️

    1. Sisters in heart, mind and spirit cannot be separated by space or time. Never does a day pass when I don’t think about you and send as much of my positive energy to you as I can. You mean the world to me, Jan. For some reason it’s increasingly difficult to spend time on the telephone, and you know I have never been much of a phone person. Due to the daily grind and lost time I find myself in this weird vortex when I look up and realize it’s midnight and I could have sworn it was only 5:00 pm. As you might imagine I’m trying my best to climb out of this deep well, but trying seems to make me slip down into the hole even further. I’m multitasking as best as I can and as my exhaustion permits – I’m actually in a hot bath right now typing this so that I’d not forget to write you and tell you how I do feel rather than you filling in the blanks.

      I love you very much. You’re in my thoughts and prayers daily. I wish we lived closer. I wish I could travel more…I wish a lot of things…but if only some of them would come true… I wish you weren’t so far away in more ways than miles.

      1. I understand more than you think. My frustration only comes from disappointment for many reasons. You too are in my prayers daily. I hope you find comfort and peace dear sister.
        Blessings

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