You can be a victim of cancer, or a survivor of cancer. It's a mindset - Dave Pelzer
When Susan Thornton was 30, she noticed a flat red rash in a small band around her waist. It was itchy and terribly persistent. No cream or lotion made it go away.
One year and half a dozen dermatologists later, she was diagnosed with mycosis fungoides, a rare form of non-Hodgkin lymphoma that's often mistaken for eczema or psoriasis in its early stages.
Twenty-five years later, Thornton's cancer is still around. It persists mostly as a manageable rash, treated with a topical steroid. At certain points the disease has flared up, requiring more drastic treatments. By 1998, the cancer had progressed to tumors, with scaly, itchy splotches spreading all over her body. It took a series of electron beam radiation treatments to knock it back, she says, "melting the tumors away."
Thornton's cancer has been under control since her last radiation treatment five years ago. Still, it's never completely gone, never cured — instead, it's just something she lives with.
Most days, the Philadelphia native feels great. She participates in triathlons every year and travels the world for work as the CEO of the Cutaneous Lymphoma Foundation. "I don't know why, but I'm one of the lucky ones," she says.
This sounds like a remarkable feel-good story. But it's actually an increasingly common cancer experience. The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they're learning to live with it.
The way we think about cancer is outdated
Many people have a simple narrative in mind when they think about cancer. Doctors discover a lump and treat it with surgery or radiation. Then one of two outcomes follows: complete remission or death.
But this couldn't be further from the reality of many cancer patients. Increasingly, researchers are learning that cancer can be many, many things. Under the non-Hodgkin lymphoma umbrella alone, there are 60 different subtypes — and each has a different disease progression. To match these different diseases, there are now dozens of treatments and surgical interventions that are used in hundreds of combinations depending on the patient, cancer stage, and type.
Most of these treatments do not "cure" the disease — instead, they "control" it, turning it into something akin to a chronic condition, like diabetes.
The conversation around cancer, however, hasn't caught up with this reality. Politicians are constantly promising to push for a cure, as Vice President Joe Biden did recently with his "moonshot" initiative.
But many scientists now think cancer is too complex — it's not just one thing — for there to ever be a single silver bullet. "To imagine that we will find a simple solution to this doesn't do service to the true complexity of the problem," explains Siddhartha Mukherjee, author of the cancer history The Emperor of All Maladies.
If we're not going to cure cancer, we've got to learn to live with the disease. And this means radically changing how we talk and think about cancer.
How we talk about cancer informs how people feel about the disease
When Whitney Archer was 25, she was diagnosed with a malignant brain tumor. "I walked into this expecting I would lose my hair, my life," she says. "But I have been able to keep all that."
A brain tumor sounds terrifying. And it was for Archer, at first. But like lymphoma, there are numerous types of brain cancers. Archer was diagnosed with an astrocytoma: a tumor that grows in the astrocytes, or the supportive tissue, of the brain. Depending on the particular subtype of astrocytoma, the cancer can progress slowly or be very aggressive.
Archer had a surgery to remove the tumor but has had no other therapies since, and no side effects from the condition. "My life is mostly like everyone else's," she says.
The war metaphors people use haven't squared with Archer's cancer experience. "Not everything is a battle or fight," she says. "Sometimes living is all you want."
Instead, she prefers the metaphor of living in two worlds. Every four months, when she goes for an MRI to make sure the cancer hasn't grown or changed in any way, she finds herself back in "Cancerland." In that world, her vision of the future is a little more limited. She confronts her own mortality.
Otherwise, it's just life as she's always known it in Gainesville, Virginia, where she works as a writer and school librarian.
Explaining this to her son wasn't easy at first: "I just told him, 'I have this thing in my head. It’s called a tumor, a growth, but it’s not growing. I'm not sick. Look at me; you can see I'm fine. I still go to work, like you go to school. We do normal things. Yes, it’s cancer, but as far as we know, it’s a kind that’s mostly okay.' With him, everything is so simple."
Her 7-year-old seemed to grasp that concept more readily than a doctor she went to see for heartburn. The doctor wanted to order an endoscopy. "Then she saw my medical history and said that if I have cancer, I had to do the procedure at a hospital," Archer says. She had to explain that the two things were completely unrelated, that she wasn't on treatment and her cancer was under control.
Overall, Archer points out, the language around cancer in general desperately lags behind the current scientific understanding of the disease — and that has implications for cancer patients and their families.
She has to be careful about how she talks about her condition. "Sometimes I don't use the c-word, because it's more shocking," she says. Whenever she mentions her illness to friends for the first time, it means shock, an inevitable interruption in the conversation, and lots of explaining that she's actually okay before they can keep talking about something else.
This is why some cancer patients decide to keep their diseases a secret for as long as they can, says Laurence Klotz, a researcher at Sunnybrook in Toronto who works with prostate cancer patients.
"One of the major challenges is to get patients off the incredible anxiety that goes along with cancer. It's described in medical dictionaries as a lethal, rampaging disease," he says.
For most patients, however, prostate cancer is very slow to progress. Men who are diagnosed with the disease are generally more likely to die from something else. So Klotz always tries to urge his newly diagnosed patients that they should not consider the diagnosis an emergency. The "c-word" can initiate a panicky urgency in them.
He opts for a different vocabulary. "I describe this as a disease that develops with age," he says, "and I use phrases like 'psuedo-cancer,' 'part of the aging process,' 'not a real disease.'"
"There are many organs where this occurs — thyroid, breast, prostate, lung cancers," Klotz continues. "These can develop and sometimes disappear." Using a different language helps patients view these cancers for what they are: an almost inevitable mutation of cells that comes with getting older.
Living with cancer can mean coping with cancer distress
Long after any physical changes that cancer brings are managed, emotional distress can linger, and it often comes in fits and bursts.
One of the cancer counselors I spoke to, Matt Stevenson at the Abramson Cancer Center, has come up with a term to describe what many patients experience every time they go in for a scan or checkup: "scan-xiety."
The psychological effects of cancer are in fact so widespread that the American College of Surgeons recently required all accredited cancer centers to screen for the level of cancer distress in new patients and then offer psychosocial care to match patients' needs.
"Distress can mean anxiety, depression, and anything else that causes stress," explains Shawna Ehlers, a psycho-oncologist at the Mayo Clinic. "The cancer community in general is getting much better at recognizing these psychological impacts."
In part, that's because the psychology of cancer can have direct effects on patients' treatments and health outcomes. Fear of progression or recurrence is the most common psychological impact cancer patients struggle with, and it's associated with both under- and overuse of health care, Ehlers explains.
"Anxiety can cause us to be recurrently checking and calling the doctor and requesting testing and evaluation. But on the flip side, anxiety can be associated with avoidant coping, when people don't want to go to the doctor," she says.
Depression is also associated with medical non-adherence, meaning, for example, a patient may skip a chemotherapy treatment or forget to take her medications.
In patients with chronic cancer, these effects can persist long after the diagnosis, long after families have dealt with the initial cancer shock.
"The thing I wish everybody understood is that cancer can impact everything — depression, anxiety, fatigue," Ehlers says. "And those impacts can be lasting."
Source: Julia Belluz, The way we think about cancer is outdated. Here’s how to change that, Vox, September 2, 2016.
Whenever the government wants to be seen to be doing something huge, it invokes the Manhattan Project or the moon landing. So the new cancer initiative of the Obama administration is called the "moonshot."
But it's neither the equivalent of the Manhattan Project, which developed the atomic bomb during World War II, nor President Kennedy's ambitious program to land a man on the moon, after the Russians
appeared to have stolen a march with the launch of Sputnik, the first satellite in space.
Those programs succeeded because they were tremendous national commitments without regard to funding.
President Obama calls the quest to cure cancer the “moon shot” of his presidency. But if the federal government has its way, this rocket may never leave the launchpad.
Targeted therapies are powerful, but cancer is a target with many bullseyes that shift position whenever struck.
Health threats can come in many disguises. We pull the masks off six that are hiding in plain sight.
Cancer, which affects one out of every two men and one out of every three women is the disease that everyone fears the most. But thanks to recent progress, cancer is also the most preventable disease!
Cancer screening has come under scrutiny as health care expenditures soar. This may be an opportune time to consider replacing the controversial mammogram with a less invasive screening tool.
Landmark breakthroughs in cancer treatment and a policy structure where those advances can flourish have given fuel to the ambitious “Moonshot” to cure the disease. But is it really possible?
Cancer patients and physicians should engage in serious conversations. I always bring my partner or a friend to such a session so the discussions can continue afterward with someone who has listened to the choices, their rationales and their potential consequences.
The emergence of checkpoint inhibitors, which Science magazine declared 2013’s Breakthrough of the Year, is a high point in the long story of cancer immunotherapy.
Debate among doctors looks at whether zealous screening leads to overtreatment
Cancer is both physically and emotionally traumatizing. Just ask any cancer survivor and there are plenty nowdays. Star Jones speaks out about her past experience and her recent surgery.
This is medicine as math, not guesswork, and every disease—even stage 4 cancer—might one day be druggable.
Tumors contain the seeds of their own destruction. We just need to work out how to activate them.
Many people have a simple narrative in mind when they think about cancer. Doctors discover a lump and treat it with surgery or radiation. Then one of two outcomes follows: complete remission or death.
But this couldn't be further from the reality of many cancer patients.
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30 years ago, the American Institute for Cancer Research was founded on a simple but radical idea: everyday choices can reduce our chances of getting cancer.
We were the first organization to focus research on the link between diet and cancer and translate the results into practical information for the public. AICR embraced the mission of changing lives to save lives.
Asian American Cancer Support Network seeks to become a community resource network for Asian Americans affected by cancer in the Bay Area through social programs and creative fundraising.
ACOR is a unique collection of online cancer communities designed to provide timely and accurate information in a supportive environment. It is a free lifeline for everyone affected by cancer & related disorders.
BJC publishes high quality original papers and reviews that make a significant contribution to increasing understanding of the causes of cancer and to improving the treatment and survival of patients.
A peer-reviewed journal of the American Cancer Society providing cancer care professionals with up-to-date information on all aspects of cancer diagnosis, treatment, and prevention.
The Cancer Advice website is designed to inform the intelligent layman concerning the present state of knowledge of particular cancers and to highlight modern aspects of therapy.
Cancer and Careers is committed to changing the face of cancer in the workplace by providing a comprehensive website, free publications, and a series of support groups and educational seminars for employees with cancer.
Cancer Australia was established by the Australian Government in 2006 to benefit all Australians affected by cancer, and their families and carers. Cancer Australia works to reduce the impact of cancer and improve the well-being of those diagnosed by ensuring that evidence informs cancer prevention, screening, diagnosis, treatment and supportive care.
Cancer Cell International is an Open Access, peer-reviewed, online journal that considers research on cancer cells, originating largely from work using cell culture techniques. It serves the world as a publication of the International Federation for Cell Biology
This chart is designed to help you get information you need from your doctor, so that you can make informed decisions about your health care.
Cancer control planners, program staff, and researchers have the same goals: to reduce cancer risk, the number of new cancer cases, and the number of deaths from cancer, as well as enhance the quality of life for cancer survivors.
The Cancer Council is the leading cancer charity in NSW. The organisation has been the focus of public action, public giving, and public communication about cancer for more than 50 years.
Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. We provide that support by matching cancer patients and/or family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience.
The Guide to Internet Resources for Cancer family of Web sites, established 1996, now with over a thousand pages.
Cancer is the term given to a large group of diseases that vary in type and location.
The Cancer Options team are committed to helping their clients make confident, informed decisions about their cancer care.
Cancer Reviews Online is a virtual review journal featuring review articles published in the five AACR journals.
Founded by actress and uterine cancer survivor, Fran Drescher, Cancer Schmancer is dedicated to saving lives through prevention & early detection of cancer. Did you know when cancer is found early, 90% SURVIVE?
To ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.
Hello and welcome! You've entered a vibrant community established by people just like you whose lives have been touched by cancer. We hope you'll find strength and inspiration from our personal stories, discussions and expressions of caring.
While this website has articles for recently diagnosed cancer patients, the main focus of this website is on identifying the very small number of the 300+ alternative cancer treatments which are strong enough to deal with the disastrous condition of cancer patients who have had extensive orthodox treatments.
Shaping the future of cancer care. The aim of Cancer World is to help reduce the unacceptable number of deaths from cancer that is caused by late diagnosis and inadequate cancer care. We know our success in preventing and treating cancer depends on many factors.
Connect to the latest and most accurate information on state-of-the-art management of cancer pain for patients, caregivers and healthcare professionals.
The best cancer care starts with the best cancer information. With more than 30,000 members who are leaders in advancing cancer care, the American Society of Clinical Oncology (ASCO) is the voice of the world’s cancer physicians. ASCO’s patient information website -- Cancer.Net (www.cancer.net) -- brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them. Well-informed patients are their own best advocates and invaluable partners for physicians.
CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.
An online cancer community committed to offering people living with cancer a home. Within, you will find people like you; people, searching for clear cancer information; people, sharing knowledge; people, connected by a common experience.
Here, women and men who are living with cancer or have completed treatment and are cancer-free share their stories of survival, from initial diagnosis and treatment to recovery and the ways that cancer has transformed their lives.
Our mission is to improve cancer care through the dissemination of up-to-date and accurate educational programming and information for healthcare professionals, cancer patients and their family members.
I strongly believe, and indeed I know from personal experience, that information can save your life. This page is dedicated to helping cancer patients find the best treatment for their disease by finding, and understanding, the best and latest information on their disease.
CancerHelp UK is a free information service about cancer and cancer care for people with cancer and their families. We believe that information about cancer should be freely available to all and written in a way that people can easily understand.
Presented by sanofi-aventis, CancerInformation.com is your choice for questions about cancer. This site provides valuable information about cancer, as well as resources for patients, their families, and their caregivers.
Working to improve the quality and value of care for all patients, CancerLinQ® connects cancer care team members, researchers and sponsors with real-world cancer data.
An Online Zine for Cancer Patients and Professionals
This cancernet-UK website describes the management of cancer, its therapies, their side effects and tips how to cope with them. Patients themselves have included topics, practical tips and tools they have found helpful during their cancer journey.
The official website for the journal ONCOLOGY provides information for physicians, nurses and patients. Also features bi-daily cancer news updates.
Dedicated to bringing patients and their families the latest news and information on cancer diagnosis, treatment and prevention.
CancerOpinions.com is the leader in cancer second opinions. We are a network of elite cancer specialists hand-picked from across the United States to deliver expert cancer guidance to cancer patients who otherwise would not have access to this level of expert care.
CancerSymptoms.org is dedicated to helping you find out more information about various symptoms you may have that could lead to early detection of various types of cancer such as liver, throat and kidney cancer. The website also features a number of resources to help you detect cancer earlier, as well as tips to help you cultivate a lifestyle that could prevent cancer altogether.
CancerWise is an online newsletter published monthly by The University of Texas M. D. Anderson Cancer Center. Each issue includes a cancer survivor''s story, related Q&A with M. D. Anderson experts, the latest reports on cancer treatment and research and tips for cancer survivorship and prevention.
Here you will find information and inspiration to guide you through your journey and give you the strength and hope in your fight with cancer.
As a leader in nationwide efforts to ease the burden of cancer, CDC works with national cancer organizations, state health agencies, and other key groups to develop, implement, and promote effective strategies for preventing and controlling cancer.
Choose You is the American Cancer Society's new movement that inspires women to put their health first, stay well and help prevent cancer.
Comprehensive website for health care professionals.
CURE is a quarterly magazine with an annual Resource Guide and special issue, that combines the science and humanity of cancer for those who have to deal with it on a daily basis.
Through its unique and award-winning products, CURE Media Group has become the source of information and inspiration for those on the cancer journey. CURE Media Group's flagship product, CURE magazine, is the indispensable guide for every stage of the cancer experience.
FEATURED TOPICS re Cancer.
ecancer is the leading oncology channel committed to improving cancer communication and education with the goal of optimising patient care and outcomes. By using the latest technologies ecancer works closely with leading figures in oncology to inform and educate the global cancer community.
The aims of the European Organisation for Research and Treatment of Cancer (EORTC) are to develop, conduct, coordinate, and stimulate translational and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patient quality of life.
After a cancer diagnosis – whether it's your own or that of a loved one – the right information can be one of your most powerful weapons. Here's what you need to know about cancer treatment and management.
Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.
Fighting Chance is the first free-of-charge cancer counseling and resource center of its kind established on the East End of Long Island, New York. We are independent from any hospital and funded solely by charitable contributions.
Flatiron Health organizes the world’s oncology information and makes it useful for patients, physicians, life science companies and researchers. Today, our software connects community practices and cancer centers on a common technology infrastructure to address key healthcare challenges.
Foundation Medicine is leading a transformation in cancer care, where each patient’s treatment is informed by a deep understanding of the molecular changes that contribute to their disease.
Cancer strikes people of all ages, but you are more likely to get cancer as you get older, even if no one in the family has had it. Learn about cancer prevention and early detection.
If you or a loved one has cancer, it is important that you understand your doctor when talking about your disease.
A Cancer Social Network & Resource Hub.
At the LiveStrong Foundation, we unite people to fight cancer believing that unity is strength, knowledge is power and attitude is everything.
Welcome to the online information resource and support group for those with lymphedema and for the family, friends, and therapists who care for them.
Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical and financial support and push for better cancer care. Cancer affects us all. We can all help. We are Macmillan.
Find information on cancer, types of cancer, cancer resources, cancer treatments, cancer research and cancer symptoms.
Cancer is a group of more than 100 different diseases. Cancer occurs when cells become abnormal and keep dividing and forming more cells without control or order, forming a growth or tumor.
From the National Cancer Institute, an alpha A to Z list of cancers.
The oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors.
As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.
Resources for all the cancer journals from Nature Publishing Group
Cancer is a very common disease. One of every two men and one of every three women will be diagnosed with cancer at some time in their life. In New York State, nearly one in four deaths is due to cancer.
OncoLink was founded in 1994 by Penn cancer specialists with a mission to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge.
OncologySTAT integrates a multitude of authoritative professional cancer information sources, such as peer-reviewed research, news and regulatory updates, a professional drug monograph and interactions database, chemotherapy regimens, and conference coverage into one easy-to-use online destination.
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life threatening or debilitating diseases.
Welcome to Planet Cancer, a community of young adults with cancer. We're glad you're here. (Well, not really. But you know what we mean.)
Take a look around. Talk with other young adults on the boards or in the fishtank. If you feel strangely at home, join Planet Cancer now! We'll keep you current on young adult issues, opportunities, and what's happening on the Planet.
We are an anti-disease, environmental group that brings fresh perspective to the causes of disease rather than ways of coping once diagnosed. We are convinced that disease is not caused by genes alone but by the interaction of environmental triggers and genetic predispositions.
Smart Patients is an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.
S4OM was conceived in 2007 at the first national meeting of oncology massage therapists in Toledo, Ohio. Whether you’ve been personally diagnosed with cancer, are a survivor, friend or family member, a medical professional, massage therapist or someone affected in some other way by cancer, you’ve found the go-to place for all things oncology massage.
Working with the top experts in cancer research, Stand Up To Cancer is forging a new way to develop breakthroughs that will end cancer. We're putting together the best and the brightest minds in cancer research those on the edge of accomplishment, investing in their projects and taking the bureaucratic obstacles out of their way.
STOP CANCER is committed to funding the most promising and innovative scientists in their early research of all forms of cancer prevention, treatment, cures and subsequent clinical applications.
Stupid Cancer is a non-profit organization that empowers young adults affected by cancer through innovative and award-winning programs and services. We are the nation's premier patient advocate for this underserved population and serve as a bullhorn for the young adult cancer movement.
A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
The Cancer Letter, published weekly since its founding, keeps clinical and academic oncologists, cancer researchers, and patient advocates current with government grant opportunities and research plans, industry news, and advocacy activities.
The Cancer Project is a collaborative effort of physicians, researchers, and nutritionists who have joined together to educate individuals, families, and the public on the benefits of a healthy diet for cancer prevention and survival.
One of every four deaths in the United States is from cancer. A range of factors are associated with the prevention of cancer including modifying behaviors, performing screening tests, and educating people about risk factors.
The international peer- reviewed journal for the practising oncologist/hematologist.
The Oncology Institute of Hope and Innovation is committed to providing superior, compassionate and state-of-the-art medical care to our patients. We offer programs to help our patients and families cope with the challenges that are brought on by cancer and strive to optimize their quality of life.
CARES was created to promote cancer awareness while raising significant funds for cancer research.
The intent of this site is to link all relevant cancer sites, sorting them by subjects appearing on the web page. An unrivalled feature of this site is the availability of multiple multilingual search engines.
Think Before You Pink, a project of Breast Cancer Action, launched in 2002 in response to the growing concern about the overwhelming number of pink ribbon products and promotions on the market. The campaign calls for more transparency and accountability by companies that take part in breast cancer fundraising, and encourages consumers to ask critical questions about pink ribbon promotions.
Vital Options International is a not-for-profit cancer communications, support, and advocacy organization with a mission, to facilitate a global cancer dialogue.
Our mission is to provide mentoring support programs and services to children of parents with cancer - one child at a time, one heart at a time.
Roughly one in four Americans will develop cancer, often as the result of unhealthy habits. Learn about the lifestyle choices that can best prevent and treat it here.
If you have a connection to cancer, welcome to the place where you can share your real-life experiences -- fears, insights, stories and advice.
WomenCARE is directed and led primarily by women with cancer or a cancer history. We respect and depend upon the wisdom that comes from a diversity of cultures, economic backgrounds, ages, sexual orientations, and physical ability levels.
WON is a worldwide network of communications among physicians and nurses practicing Hematology/Oncology.