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The word survivor can mean many things. For those in the cancer community, survivorship is a broad spectrum of living with cancer and goes far beyond the original diagnosis. According to the National Cancer Institute, cancer survivors are living longer than ever. In 2016, there were an estimated 15.5 million survivors: 67% of them were survivors of 5 or more years, and 17% had survived at least 20 years. By 2026, it is expected that there will be over 20 million cancer survivors in the U.S. alone.
Being a long-term cancer survivor has many different faces and meanings. Like cancer itself, the survivorship journey is unique for everyone. We recently reached out to some long-term cancer survivors to learn about their experiences and what survivorship means to them.
Overcoming the Initial Prognosis
Depending on the type and stage of the cancer, patients face vastly different prognoses. For example, the American Cancer Society estimates the 5-year survival rate for breast cancer patients can range from 22% for those with stage IV cancer to almost 100% for those diagnosed with stage I. For someone diagnosed with mesothelioma, a rare cancer that most often affects the lungs, the survival rate is much lower. Only about 9% of patients are estimated to survive 5 years or longer.
Amelia Frahm was diagnosed with breast cancer in 1994 when she was just 34 years old. As of this January, she has been a survivor for 23 years. When she was first diagnosed, however, her life expectancy was unclear. “Your prognosis is good, but I wouldn’t go to Las Vegas with your odds,” she recalled the oncologist telling her.
Twenty-year survivor Wendy Cooper faced a dire prognosis after being diagnosed with merkel cell carcinoma, a rare skin cancer. She was told she had only a 10% survival rate. Wendy believes the great people and doctors in her life allowed her to beat such odds, especially after she was initially misdiagnosed with melanoma.
“The Universe put some people in my life to help me along the journey. I was misdiagnosed with melanoma and had to go to San Diego to get the correct diagnosis,” Wendy recently told us. “I had someone in my life who was diagnosed with melanoma and I went to his doctor; however, that doctor knew instantly that I did not have melanoma and proceeded to find out what I did have.”
Early detection and diagnosis are crucial and often mean more treatment options are available, which in turn can greatly improve a patient’s life expectancy. Treatment and care do not end beyond the initial cancer diagnosis. Many survivors require continued care even after there is no more evidence of disease.
Survivorship Care Plans
Survivorship care plans are created to provide continued support for patients to help them live a quality life after cancer. Survivorship care plans typically include information for medical follow-ups, the long-term or late effects of cancer and treatment, and how to live a healthy life. These plans have only become more commonplace since the mid 2000s. The three long-term cancer survivors we spoke to hadn’t heard of these plans, and mostly researched on their own.
Amelia’s diagnosis came at a time before Google, so finding information on her own was much more difficult. She recently told MCA that so much has changed since then in terms of cancer research and information for survivors. “Sometimes it’s unbelievable how much has changed. Back when I was diagnosed, the perception was that women my age didn’t usually get breast cancer and that I was just unlucky,” Amelia explained.
Finding support groups and reliable resources can prove invaluable for cancer patients and survivors alike. Sally Ekus, a 29-year-survivor of acute lymphoblastic leukemia, says she still relies heavily on support and services from the Leukemia & Lymphoma Society. Being able to connect with someone who has faced a similar diagnosis can make the long-term effects of cancer easier to handle.
Last year, the American Cancer Society conducted a survey among cancer survivors of nine years or more to learn about what they want to know in order to help improve survivorship care plans. Through the survey, researchers found three main questions common among survivors:
- What cancer screenings should I have for other types of cancer?
- What are the long-term side effects of treatment?
- What behaviors should I adopt to lead a healthier life?
A cancer diagnosis goes beyond initial treatment, and it’s important that survivors get the care and support they need through the rest of their journey.
Challenges of Survivorship
Surviving cancer isn’t as simple as being “cured” and moving on to lead a normal, healthy life. Survivors face both physical and mental effects from cancer.
“I worry that one of my children will be diagnosed with cancer and their prognosis will not be as good as mine has been,” Amelia told us. “We had a scare when my daughter was in her early 20’s, and it was recommended that she receive a mammogram each year...I will never forget the moment she told me she had found a lump in her breast. I went through the motions, but I was a living zombie until after her surgery and the pathologist report came back [non-cancerous].”
Side effects from treatment are also common among survivors. The effects can vary depending on the type of treatment from digestive problems to lymphedema to memory loss. There’s no set timeline for any possible side effects to arise either, so it’s important to be aware of any symptoms.
Though Sally noted she no longer needs long-term care beyond her regular checkups, she still faces some problems from her treatment. “I have found that I have residual digestive and microbiome issues which require me to work with a wellness center to manage them through diet,” Sally explains. “I also have anxiety around needles and any medical procedures.”
Anxiety is not uncommon among survivors. Many survivors feel a sense of “scanxiety” as they wait for their results to return for follow-up tests. There’s often a lingering fear of recurrence or the fear of developing another type of cancer. It’s easy to worry after any cancer diagnosis, no matter how many years it has been. “The fear of the word cancer is gone, however the thought of it recurring is always there. I just cannot dwell on it,” Wendy explained.
What It Means to Be a Survivor
Cancer survivorship can mean many different things. For the three survivors we spoke to, they all recognized their ability to be advocates and help others facing a hard diagnosis.
I realized I had been waking up in the morning and cancer was not the first thing I thought about,” Amelia described. “As time went by, I realized I had quit thinking of it in terms of my diagnosis and only thought of it in terms of my career and advocacy as a children’s book writer.”
Amelia wrote a children’s book called Tickles Tabitha’s Cancer-tankerous Mommy in 2001 to help families deal with a cancer diagnosis. She traveled to different schools to talk about the book and her own experience, later developing cancer awareness programs at some schools.
Wendy also continues to advocate and talk about her own cancer journey. She hopes others recognize the importance of being vigilant of their health, going to the doctors, and taking advantage of screenings and preventive measures.
Reflecting on her own survivorship, Sally said, “It can be beautiful. Having cancer shaped who I am as a person. It means I can be a beacon to other families and patients that there is life after cancer.”
Every cancer journey is unique, including in survivorship.