National Young Adult Cancer Awareness Week® 2013
30 years ago this week, I was a young adult diagnosed with breast cancer. If you’re a young adult with cancer today, it would be hard to imagine what it was like in 1983. Even the phrase, young adults with cancer, often provoked a reaction of surprise and dismissal. While feelings of isolation and alienation still accompany a young adult cancer diagnosis, the landscape and horizon for young adults and adolescents facing cancer is very different and rich in hope.
I don’t believe I would be alive today had I not had the fortune to have already been working in healthcare since my early 20’s. While attending school, I was also a respiratory therapist at a Los Angeles teaching hospital. It was only because I had established friendships with physicians and medical professionals that I had any idea how to navigate my way to someone who would take the breast mass I had felt seriously enough to consider that I could have breast cancer, even as a young adult. I was 27, my mother had died only months before of ovarian cancer, her brother’s death to a brain tumor quickly followed, and even though I was only four at the time, I could not stop thinking about my maternal grandmother and remembering the final stages of her painful cancer death. So hearing that I was “too young for cancer,” to “go home and forget about it” and that I was “being neurotic…” further frightened me.
I found that lump on self exam, and even though today some will argue against young women examining themselves since it could lead to unnecessary biopsies, I will always advocate that young women need to learn their breasts and what’s normal for them, and how a cyst and a solid lump feel different; just like young men need to learn their testicles to know of changes early on. Body and self awareness is not something you can just turn on when you turn 40. We need to be aware if we are to be responsible. And today, in an era of patient directed healthcare, there is even more of an obligation upon each of us.
I was 28 when my diagnosis finally came about. I went to a support group to try to meet others like myself, but I was alone, or at least felt all alone. So starting Vital Options was the only thing I could do to try to make something good come out of such a devastating blow that cancer dealt out to me and my family. And surely, I thought, there have to be other young adults out there who are facing cancer and think they’re alone, and like me, are being told they are too young for cancer and delayed in getting a diagnosis.
As media attention grew around the launch of the first organization for young adults with cancer, so was the response from young adults. Many of them often drove hours to come to a weekly support group. We were flooded with calls from young adults with all types of cancer from throughout the country, and sometimes beyond. Other organizations now came forth offering to “adopt” us, because we were told that we were–again, “too young” to know how to do this on our own. But being parented was totally the opposite of what we were striving for and today’s vibrant and explosive young adult cancer movement can attest to that!
1983 was still very early in the patient support and advocacy movement, and at the time, existing organizations were not yet interested in expanding programs for young adults. I was no longer working at the hospital, but went back to school as a full time student at UCLA, thinking I’d become a medical sociologist. Having experienced firsthand so many of the issues that burden young adults who face catastrophic illnesses at the most pivotal and influential time of their lives, my drive to transform my own cancer experience into a force for change, not just in my life, but for young adults with cancer in general, became my sole purpose and focus. It shaped who I became and remains at the core of who I am and what I do today.
Vital Options has continued as a pioneering influence and has also matured and grown over its 30 years. The first decade was exclusively focused on young adults between the ages of 17-40. In the mid 1990’s, in response to the way the public was seeking and accessing online cancer information, it launched The Group Room®, the first radio cancer talk show of its kind, inviting callers of all ages. It debuted on WOR in NYC and the program was syndicated in partnerships with major radio networks and stations across the nation. It challenged the radio industry when in 1999 it was voted as one of the top 100 most important radio programs in the country. It goes to show you how important and truly instrumental young adults can be when it comes to raising the bar and influencing change! The Group Room was one of the early programs to be picked up by XM Satellite radio. In the beginning years of The Group Room, Premiere Radio Networks took us on a road show and I vividly recall how program directors and station managers were quite intimidated by the idea of talking about cancer on the air and it was all too often referred to as “death” radio. Far from it though, as it was “life” radio at its best! After all, isn’t cancer the perfect metaphor for all the various types of “malignancies” one has to overcome in life…? The Group Room aired for 14 years before transitioning to its current video format. Today, much of radio is Internet based and there are a variety of programs now available through this medium that benefit cancer patients everywhere.
Vital Options is now an international cancer communications organization. Along with The Group Room and other programs such as Advocacy In Action®, Vital Options continues producing a variety of video content, (www.thegrouproom.tv). While no longer limited to young adults with cancer, this age group will always remain special and of particular importance and commitment to Vital Options and to me, and why we launched National Young Adult Cancer Awareness Week® (NYACAW) in 2003.
As I celebrate my 30th anniversary since being told I was “too young for cancer” and reflect on life as young adult survivor over these last 30 years, I think about how I took a chemotherapy protocol that was still two years away from becoming the standard of care, thanks to an innovative and progressive medical oncologist who embraced me and the cause of young adults. I think about the Human Genome Project and how I participated in the early Canadian clinical trial on behalf of identifying the BRCA mutation, which clearly pointed to me, my mother, and my grandmother. 20 years after breast cancer, this led to an elective surgery to remove my ovaries and fallopian tubes to reduce the risk of meeting the fate of mother and grandmother. While it was intended to be an affirmation of life and survival, an incidental discovery was made at the time of my prophylactic surgery and I awoke to be told that I already had ovarian cancer.
When I began treatment I experienced chemotherapy in a whole new way, as supportive care did not really exist in my 20’s as it does now. Those were the days when they tried to control nausea and vomiting with suppositories, before the antiemetics now available or the drugs to boost white cells and red blood cells. I have since experienced targeted therapies and molecular pathology that is creating pathways for personalized medicine, fundamental to oncology.
I have now lived through such defined periods of clinical advances in cancer and many of these emerging therapies are still in their infancy. While I may miss the chance at what is just around the corner, as I continue my own personal cancer journey, I share these thoughts with such hopeful anticipation for the young adults with cancer today, since there is a promising tomorrow after all.
Yes, there are still huge challenges to overcome when you’re diagnosed with cancer, but there is also huge opportunity for young adults with cancer to move and shape the future, and I am grateful for being a young adult survivor who has lived long enough to be a part of this change going forward.
So on this week of young adult cancer awareness, please spread the word, change a life, honor a life, especially yours!
All my best wishes,
With a preface by Selma Schimmel, POSITIVE RESULTS: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer will help women through deciding if they want to pursue genetic testing and how to manage their breast and ovarian cancer risks. For more information, click here.
To purchase a copy of, Cancer Talk: Voices of Hope and Endurance from “The Group Room,” the World’s Largest Cancer Support Group, click here.
To read about the beginnings of Vital Options International as the first organization for young adults with cancer in the Los Angeles Times (March 19, 1985): Click Here