Cancer terrifies us. It just does. Especially those of us who grew up when most kinds of cancer meant certain death. And for us it hasn’t seemed to matter that treatments and survival rates speak to the contrary. It still terrifies us. But maybe that’s beginning to change. As we watch people around us survive so many types of cancer, maybe the “Big C Word” isn’t necessarily the death sentence it once was. Maybe the survival rates really are confirming that those with cancer and their loved ones have every reason to be hopeful. The American Cancer Society would say it does, and they have in a new report issued this week.
And though no one really wants to be a member of this particular club, Cancer survivors are a growing group, one that has beaten the odds and one that will need continuing and unique kinds of care.
According to estimates from the “Cancer Treatment and Survivorship Statistics, 2019,” cancer survivors are predicted to number over 22 million by 2030. Every three years, the American Cancer Society and the National Cancer Institute collaborate to estimate cancer prevalence in the U.S. using incidence and survival data from the Surveillance, Epidemiology, and End Results cancer registries; vital statistics from the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics; and population projections from the U.S. Census Bureau. The new report further holds that the “growing and aging population will increase cancer survivor count despite trends in incidence.”
This is great news for survivors of the deadliest cancers, like Shannon Lokke Nelson, who said though she is a survivor, her life has changed forever. She contends that more cancer survivors will necessitate more changes in medicine overall. “If the quoted numbers and trends are correct, and I have no reason to doubt them, the disability burden on society must be dealt with,” she said. “Disregarding it only increases the burden, and I feel I’m a perfect example of this.”
The 51-year-old former bookkeeper beat some incredible odds three years ago and survived stage 3c ovarian cancer. The 3 means the cancer is found in one or both ovaries, as well as in the lining of the abdomen, or it has spread to lymph nodes in the abdomen. The “c” means that larger deposits of cancer cells have made it outside the spleen or liver, or that it has spread to the lymph nodes.
“My husband and I both thought I would either die or beat it and be all better again,” Nelson said. “Well, I’m still here, I’m cancer free, NED as we call it—No Evidence of Disease—and I thank God, my family and Barnes Hospital every day for it. But there is no ‘putting that behind us.’”
Nelson said she’s active in several cancer groups on social media, and through them, she has learned that cancer care beyond the cancer is a whole new area of medicine that health care professionals are just beginning to discover and address. “I’m in no way unique. We all struggle. No one prepared us. No one knows what to do with us. The oncologists at Barnes are treating and saving the lives of people with active cancer. I scanned clean. They’re done with me. My primary [doctor] just looks at me in awe and says, ‘Quite frankly, I’m just amazed you’re still here, standing in front of me, looking as good as you do.’”
Nelson said she believes the incidence of increased cancer survival will necessitate a more holistic approach to medicine in the west. “I have a number of specialists, but how in the world do I know where to start when I know I’m going downhill? My nephrologist knows how to fix my kidney damage from cancer. But unfortunately, the four blood pressure meds I’m on often end up going straight through my system, completely unabsorbed, leaving me with readings of 188/110, despite taking nine blood pressure pills a day. My primary can prescribe antibiotics that will knock out a sinus infection. But he has no idea how to do it without destroying my stomach and setting me back terribly. We cancer survivors teach other, because no one else is. If we know this avalanche is coming, and mostly here already, we need to take action. Western medicine has got to take a more ‘whole body’ approach to care. This would benefit not only cancer survivors, but also autoimmune disease survivors, any chronic condition.”
Nelson said she has a few recommendations for change that would help cancer survivors and all patients in America: “Do we want to reduce mortality and disability? Do we really?” Nelson asked. “This would be a very good time to take a multi-faceted approach to revising our healthcare system in the U.S. Universal healthcare is first priority. Our current healthcare system cannot make this doable, but if we were to demand a more whole-body, preventative approach from our healthcare system, remove all profiteering—insurance companies in general, and the political influence of pharmaceutical companies—emphasizing preventative maintenance and healthier living, and for the love of God quit denying us natural, effective remedies such as CBD and THC while you figure out ways to bankrupt us for it. These would be my recommendations. The benefits would be unreal not only for cancer survivors, but all of us.”
The authors of the “Cancer Treatment and Survivorship Statistics, 2019” agree that as survivors grow in number, new approaches to treating them will be necessary. “People with a history of cancer have unique medical and psychosocial needs that require proactive assessment and management by follow‐up care providers,” they wrote. “Although there are growing numbers of tools that can assist patients, caregivers and clinicians in navigating the various phases of cancer survivorship, further evidence‐based resources are needed to optimize care.”
Many survivors cope with long-term physical effects of treatment as well as psychological and socioeconomic conditions that resulted from cancer, the report says. Survivors and their caregivers and loved ones must now learn to navigate the health care system, “including poor integration of survivorship care between oncology and primary care settings, as well as financial and other barriers to quality care, particularly among the medically underserved,” the authors wrote.
According to the new report, cancer incidence rates are stable in women and declining in men, and still the number of cancer survivors continues to increase in the United States. This is due in part to a growing and aging population, as well as advances in treatment and early detection.
Authors reported that some 16.9 million Americans with a history of cancer—currently 8.1 million males and 8.8 million females—were still alive on Jan. 1, 2019, a number that is projected to reach more than 22.1 million by 2030 based on the growth and aging of the population alone.
The report notes that about two out of three cancer survivors (68%) were diagnosed five or more years ago and nearly one in five (18%) was diagnosed 20 or more years ago. Nearly two-thirds (64%) are 65 years or older. Additionally, the report estimates that there are 65,850 cancer survivors 14 years and under and 47,760 ages 15 to 19 in the U.S.
Most prevalent among men in 2019 are prostate (3,650,030), colon and rectum cancers (776,120), and melanoma of the skin (684,470). Among women, the top three are breast (3,861,520), endometrium (uterine corpus) (807,860), and colon and rectum cancers (768,650). According to the report, cancer prevalence and cancer incidence figures differ because prevalence reflects not only occurrence but also survival and median age at diagnosis. As an example, while lung cancer is the second most commonly diagnosed cancer in men, it ranks eighth in prevalence, largely because of the disease’s poor overall survival.
Authors of the report concluded that despite increasing awareness of survivorship issues and the resiliency of cancer survivors, many challenges remain. “These include a fractured health care system; poor integration of survivorship care between the oncology and primary care settings; clinician workforce shortages and knowledge gaps about the needs of cancer survivors; lack of strong evidence‐based guidelines for posttreatment care; and financial and other barriers to quality care, particularly among the medically underserved.”
The report contends that identifying best practices for delivering quality posttreatment cancer care is needed and highlights some of the efforts of the American College of Surgeons, the Alliance for Quality Psychosocial Cancer Care and the American Cancer Society. To this end, the American Cancer Society recently released a cancer survivorship blueprint to establish priority areas for care delivery, research, education and policy. The American Cancer Society has also produced guidelines for some cancers to help primary care and other clinicians provide effective posttreatment care for people with a history of cancer.
“Future research should also focus on identifying best practices for engaging cancer survivors in adopting and maintaining a healthy lifestyle at the policy, health care system and individual patient levels,” the authors wrote. “Models for the integration of comprehensive care for cancer survivors and their caregivers, including self‐management, wellness and healthy lifestyle promotion, and cancer rehabilitation, are beginning to emerge. As the evidence base grows, efforts at the individual, provider, system, and policy levels will help cancer survivors live longer and healthier lives.”