"Life-altering" is the term I choose to describe the history of the intersection of my professional and personal life. It begins with a love story but it continues with something very different. Before I go down that road, I want to highlight that with a life-altering event, there often comes a revelation. Something can be seen that was not visible before. Unquestionably, my experiences have revealed new ground to me.
I met my husband through a colleague at work. We went on a blind date, fell in love and got married. That was the first time my professional life and my personal life intersected in a life-altering way.
The second time was when I was in the midst of planning a major news briefing on a new cancer treatment for a client. My husband called me at the office. I needed to join him at the emergency room where our son, Noah, had been rushed to undergo a cancer workup.
This was no love match, cancer and I. Cancer crossed the line and invaded my personal life.
Noah was nine years old and needed an expedited diagnosis of a suspicious lymph node and a mass in his chest. As we sat in the hideous emergency room while our son underwent a lymph node biopsy, my husband called our rabbi and we prayed that Noah had tuberculosis. We prayed that he had anything except cancer.
For me, at that time, cancer was part of my professional work, not my personal life.
Starting in the mid-1980s, I managed teams at Ruder Finn that developed programs for clients who wanted to communicate about the importance of cancer prevention or to educate healthcare professionals, patients or the public about new developments in cancer therapy. Indeed, my cancer resume is quite extensive: Smoking cessation, sunscreen education, supportive care therapies, melanoma treatment, adjuvant hormone treatment for breast and prostate cancer, stem cell research in brain tumors, palliative care, targeted therapy for leukemia and stomach cancer, chemotherapy for colon cancer, and VEGF treatments. My work directly involves researchers, oncologists, patient interest groups, patients, and even celebrities who have a connection to cancer. The work is fascinating, dynamic and very professionally rewarding.
In regard to cancer, I was invested only as a professional communicator. Then, on that day in April 1996, the life-altering event occurred where my professional life and my personal life once again intersected. And that intersection has brought profound and permanent aftershocks to my life.
As I navigated the new landscape of my life, I learned that the changing dynamics of cancer treatment have revealed the new ground of cancer survivorship. And with this has come a new paradigm for caregiving.
Survivorship: The Return to Normal Life
hat has been revealed to me, and to many others, is the unique environment of life after treatment for cancer patients and their families and loved ones. Cancer survivorship is an uncharted landscape for many people and it sets up new challenges and concerns.
Here is a sobering fact: According to the American Cancer Society (ACS), three out of four families will have at least one family member diagnosed with cancer. But with advances in treatment and early diagnosis, the numbers of cancer patients converting to cancer survivors is increasing.
"Almost all cancer patients want one thing, to return to normal life" says Diane Blum, Executive Director of CancerCare, Inc. a nonprofit organization which makes sure that people with cancer and their loved ones have free of charge the professional support they need to meet the emotional, physical and financial challenges of living with the life changes a cancer diagnosis brings. Normal life for someone who has been treated for cancer is a different kind of "normal," experts I spoke with told me. According to the Lance Armstrong Foundation LIVESTRONG Poll, although their cancer may be gone, secondary health problems due to the effects of the disease or treatment affect 53% of survivors. And 70% of the poll respondents said that they dealt with issues of depression during and after their treatment. Sixty-six percent had job issues due to their disease (lack of advancement, demotion, job loss, trapped in job to preserve insurance coverage).
My son is a survivor of Hodgkin's disease, a cancer that was diagnosed and treated when he was nine years old. He is now 20 years old and a junior in college. He is healthy. But his aggressive cancer treatment, which included surgery, chemotherapy and radiation, has cost him his spleen, his thyroid function, and has put him at risk for heart problems and future cancers later in life. His pediatric oncologist continues to monitor his health and will do so for what we all hope is a very long lifetime.
The statistics on survival rates of childhood cancers are something the professional oncology world likes to point to with tremendous pride. It is only in the last 30 years that children with cancer could hope to live to adulthood or even have a "cure." Long-term survival rates for as many or more than 78% of all young patients have become the norm due to new and improved methods of treatment. But often that survival comes with some cancer- related baggage that oncologists label "late effects." Tied back directly to the treatment regime, the original disease, or a combination of both, these late effects are health problems that can occur at any time and many may not show up for 20 years or more.
In 2003, the Institute of Medicine (IOM), which provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector and the public, issued a report, "Childhood Cancer Survivorship: Improving Care and Quality of Life." This was a comprehensive policy agenda focusing on research, further education and training for doctors, and the need for funding to support this growing segment of survivors. The Childrens' Oncology Group, a national consortium of pediatric oncologists, took the IOM policy agenda and put into practice its guidelines for the care of these youngest survivors who number more than 270,000 in the U.S.
It is hard to believe, but when the National Coalition of Cancer Survivorship (NCCS), a Washington, D.C. - based advocacy group, was founded in 1986, the term "cancer survivorship" was not part of official medical or scientific language. Since that time, through the diligence of advocacy organizations like NCCS and the Lance Armstrong Foundation coupled with a growing field of scientific research, survivorship has become an integral part of any cancer treatment plan.
Lidia Schapira is an oncologist specializing in breast cancer and a staff physician at the Massachusetts General Hospital and an Assistant Professor of Medicine at Harvard Medical School. She credits the pediatric oncology community and patient advocacy groups for influencing the adult cancer treatment paradigm and bringing survivorship into the spotlight. "It used to be that we would treat patients and worry about late effects or permanent effects of the therapy later," says Dr. Schapira. "Now, the approach we take is to insist that the conversation with the patient be broader than just the facts and prognosis and treatment plan."
From a practical perspective, it has been as recently as the last three-to-five years, Dr. Schapira notes, that most oncologists have integrated survivorship. This was confirmed in a discussion with Linda Vahdat, M.D., Director of the Breast Cancer Research Program at Weill Cornell Medical College in New York City, who notes that with the rapid advances research is showing in the treatment of breast cancer, it is critical to keep her patients "in the loop post-treatment." She specifically points to the new research on the use of aromatase inhibitors, such as Femara, a product we work on here at Ruder Finn, in lieu of tamoxifen, which for over 20 years was considered standard of care for post-menopausal patients. "If you discharge cancer survivors from your practice, how do you then reconnect with them when research shows new therapeutic advances in survival?"
Dr. Vahdat is part of a new initiative at Weill Cornell that is significantly expanding its research-based survivorship program. "We are growing from a suite of offices to an entire floor and hiring staff to accommodate the patient care and clinical research needs," says Dr. Vahdat. "We want to study and quantify post-treatment issues of our patients so that we can develop solutions in administering treatments in the first place or otherwise counter these problems." Depending on their individual situations, Dr. Vahdat sees her cancer survivors on a quarterly or annual basis for their lifetime.
Dr. Schapira concurs that is it critical to take a comprehensive and far-reaching approach in the care of cancer patients. "Many domains in the quality of life take a direct hit from cancer treatment, and some treatments, causing 'late effects,' hurt the individual later on," she explains. Issues surrounding cancer survivorship touch almost every aspect of a person's life. "Fertility preservation, vocational re-training, sexual function, altered body image, and cognitive impairment are all things that treatment impacts and that doctors and patients need to talk about before designing a course of therapy," says Dr. Schapira. "And the physical impact of treatment can bring up psychosocial issues which also need to be addressed."
In looking for a normal life after cancer, patients are challenged by what this actually means for them. "For many cancer survivors, after treatment, the definition of normal changes and it is important to be flexible about 'normal,'" notes Dr. Schapira. "Many people reinvent themselves and patients with visible body changes make peace with their new body image."
Today, the widely accepted definition of cancer survivorship is that it starts at diagnosis and continues throughout a person's lifetime. As such, Dr. Schapira says, "We encourage patients to gain a sense of the future, regardless of the uncertainty of their disease and without fear of recurrence."
Tom Vickery is a 12-year survivor of non- Hodgkin's lymphoma and former senior vice president in the Ruder Finn Healthcare Practice. He overcame the challenges of aggressive chemotherapy and radiation at age 31, but he still sees his oncologist to proactively manage any signs of recurrence.
Tom is healthy now. He credits his survival to first-rate medical care and a supportive network of family and friends. "Even though I was very sick, I knew my time was not up and that I still had a lot left to see and do in my life," says Tom. "A positive attitude is critical even when things are tough."
Unlike many others, Tom was fortunate to have understanding and compassionate employers over the years. During his illness, which occurred while working at another public relations agency, he had the support of his managers and colleagues. "Getting back to work after eight weeks of initial treatment really helped my recovery I needed a reason to get up in the morning," recalls Tom. "Fortunately, I worked with considerate people who respected the boundaries I had to create."
Working with his colleagues at Ruder Finn who have had their own cancer experiences, combined with the agency's work on behalf of Novartis Oncology, provided him with a supportive environment. "Even though my cancer experience was one of the most difficult times in my life, it gave me a perspective on life that very few young adults get," says Tom. "I'm always mindful of the fact that I'm a cancer survivor, and I know that I need to vigilant about taking care of myself not only physically, but also emotionally and spiritually."
Regardless of age, cancer survivors need special interventions and services to help them regain normal lives. In recent years, as more and more cancer patients survive rather than succumb to their disease, a growing number of resources and advocates have emerged. The National Coalition for Cancer Survivorship provides a strong force at the federal level, "advocating for quality cancer care for all Americans and empowering cancer survivors." Their website (www.canceradvocacy. org) is an extensive resource for support, services and information.
In 2005, CancerCare and the Lance Armstrong Foundation kicked off a collaborative program to provide counseling, education and financial assistance to cancer survivors. Accessible online, via telephone or in-person meetings, this program offers survivors counseling with specially trained social workers. More than 80 calls a week are fielded through this program.
Cancer specialists also realize that their support of patients post-treatment is critical. In 2002, the American Society of Clinical Oncologists launched a Web-based program, "People Living with Cancer," (www.plwc.org) to target both patients and survivors with medical and practical information to improve the quality of their lives. All content on this site is carefully reviewed and checked by medical, surgical, radiation, and pediatric oncologists, oncology nurses, social workers, and patient advocates. The PLWC Editorial Board is led by Editor-in-Chief Diane Blum, MSW, who is also Executive Director of CancerCare, Inc. (www.cancercare.org).
Awareness and response to the psychosocial impact of survivorship in cancer is a sign of progress, notes Ms. Blum. There are institutional and societal barriers that still exist, as well as limited resources. However, the growing numbers of survivors, many of whom have been very vocal about their disease, are helping to expedite change. And their loved ones are joining them.
For me, communicating about cancer professionally and living with it personally has gone beyond those two areas. The synergy of my experiences has propelled me into the world of advocacy. I have entered this world not so much as a public relations professional or a parent but as a fierce proponent of advancing public health strategies and ensuring the best possible outcomes for cancer patients post-treatment.
Ask me any day of the week about cancer and my response will be tempered by one thing: location, location and location. From where I sit professionally, we work on several life-extending if not lifesaving therapies and compounds in development. Our work for Novartis Oncology has given us the privilege to communicate about Gleevec, one of the true blockbuster cancer treatments that has brought new hope to patients. As a member of the National Board of Trustees of Cancer- Care Inc., I advocate for the education and financial support needed for cancer patients and their families as they face the immense challenges of treatment. And, as the mother of a child who is now 11 years post-treatment for Hodgkin's disease, I still worry that whenever my son has a cold or a muscle pain that something far worse is wrong.
I could not have foreseen the intersection between my professional and personal lives. But I have chosen to take what has been revealed to me through my experiences and to use it to move forward positively and productively. It is my hope that everyone not just those who have a personal point of intersection will be inspired and motivated to work for a better future for cancer patients.