Cancer Guides

Each person's emotional response to cancer will depend on various factors, including an individual’s support system, coping style and perception of illness. As patients struggle with issues of diagnosis and treatment, they could also face the social pressures that come from well-meaning friends who want more than anything for them to be OK. Psycho-oncologists, who address the emotional needs of cancer patients, have determined that a healthy emotional response to a cancer diagnosis includes three phases — initial reaction, distress and adjustment — that will take patients through a typical grieving process.

The initial reaction to a cancer diagnosis is often shock and disbelief, followed by a period of distress characterized by mixed symptoms of anxiety, anger and depression. As patients learn about their options and begin to see a treatment plan form, they will enter an adjustment phase. Following a diagnosis, they might experience persistent sadness, in addition to anxiety or depression; decreased interest in sexual activity; fatigue; difficulty concentrating, remembering or making decisions; insomnia or oversleeping; weight and appetite loss; and restlessness or irritability.

Usually, many of these symptoms might be considered unhealthy, but for a person with a new cancer diagnosis they are a normal part of the process of dealing with a new reality. However, feelings of hopelessness and guilt, or feeling stuck in one of the stages above, could indicate more serious distress.

Online or in-person support groups or professional counseling can help.

Patients with cancer participate more today in determining their treatment plan than in past years. But with that power comes the anxiety of making a decision, particularly when there are multiple options and no clear advantage to any one choice. The number of therapy options depends on the type of cancer. In addition, doctors might disagree about the best course of action when a standard of treatment does not exist for a certain cancer, adding another layer to a complex decision.

Some people find that researching their cancer helps relieve anxiety. The internet has made it easier and faster for people to find cancer information and support online, but it can also expose people to false and misleading claims. Many hospitals and treatment facilities have libraries or patient education centers that provide reliable resources, and nonprofit organizations often have support groups that enable patients to talk with others who share their diagnosis.

Often, patients cope with their situation by concentrating on the things they can control, such as taking good care of their bodies by eating a healthful diet and exercising. Some patients find relief in completing practical tasks, such as setting up a system to deal with insurance, making sure wills and other legal issues are finalized or talking with friends and loved ones about unresolved problems or feelings.

A cancer diagnosis is stressful, and few people successfully manage it by themselves. Most seek encouragement from friends, family members or support groups. Others seek support from clergy, nurses or mental health professionals. Another useful resource offered by some hospitals is a patient navigator, typically a registered nurse, social worker or trained community member (sometimes a cancer survivor), who can help patients “navigate” the health care system, appointments and financial issues. In most cases, patient navigators won’t tell patients what to do, but will suggest questions to ask their doctors and help them establish priorities. Being prepared can decrease stress and anxiety.

It’s important to remember that each patient’s cancer and situation are unique. So when it comes to support, one size does not fit all. Patients should talk with their health care team to learn about available resources.

A cancer diagnosis also affects a patient’s loved ones, so support could be needed for coping with family dynamics. Patients might feel too ill to fix a meal or might need a ride to the clinic. They might need to take time off from work, temporarily thwarting career aspirations and conceivably placing a greater financial burden on a spouse or partner.

Whether patients have early-stage or advanced cancer, the diagnosis will likely bring up feelings of mortality, which can also cause anxiety. Addressing practical end-of-life issues, such as drawing up legal documents, can help lessen anxiety.

Upon receiving a cancer diagnosis, some patients have a sense of guilt that they did something to cause their cancer — or that their family has to also go through it.

Although some cancers are linked to certain behaviors, it doesn’t do any good to look back. It’s not unusual for patients to try to understand why their cancer developed, but focusing on the cause can lead to unnecessary stress. A study of women who had recently received a breast cancer diagnosis showed that those who blamed themselves for their cancer had higher levels of distress than those who didn’t. The findings also suggested self-blame made it harder to psychologically adjust.

Guilt is a barrier to living life fully, so experts recommend that patients work through those feelings by talking to a social worker or counselor, keeping a journal or participating in a support group.

Studies indicate that nearly one-fourth of patients with cancer will have symptoms of depression during treatment, which is understandable. Feelings of sadness about cancer and the changes it brings are normal and could actually help patients cope. However, persistent feelings of helplessness or hopelessness and a sense of worthlessness are not typical, so patients experiencing these feelings should notify their doctor.

To distinguish between normal sadness and depression, patients should note their mental state and determine if, after two weeks, they feel better emotionally. If not, the patients should be evaluated to find out if the problem is clinical depression. Remember, some cancer therapies are associated with mood disturbances.

People with mild to moderate depression are often responsive to talk therapy. For these patients, support groups, buddy systems, cancer education programs and psychotherapy can be useful for regaining a sense of competence and control.

For those with moderate to severe depression, medication and psychotherapy are an effective combination. A range of antidepressants is currently available that varies significantly in terms of side effects, tolerability and safety, and their use should be monitored. Depression is a treatable disorder of the brain. It’s an illness, so patients shouldn’t be afraid to get the help they need to manage it.

Just as there’s no single way to treat cancer, there’s no one prescription for dealing with distress. Some patients benefit from speaking with a counselor or social worker, others from taking antidepressants or anti-anxiety medications, exercising or meditating. For details about distress screening and management, visit CancerSupportCommunity. org.

Strategies known as integrative and complementary therapies can help with both the emotional and physical side effects of stress, worry and the disease and treatments themselves. These can include massage, yoga, acupuncture, meditation and therapies centered on music, art, writing or dance. Many hospitals offer such services, and others led by trained experts can be found in communities.

Integrative therapies may be, but are not always, part of palliative care plans, which are care strategies that don't aim to cure disease, but are meant to improve quality of life for patients during and after treatment by relieving symptoms. Experts agree that palliative care should be available early in the cancer journey, regardless of someone’s diagnosis or prognosis.

In addition, there are several programs designed to boost the physical appearance of women and men with cancer — through methods including makeup and wig application, stenciling in eye- brows for those who have lost hair, and even the staging of fashion photo shoots — that can also go a long way toward lifting spirits.

When deciding when, what and whom to tell about their cancer, patients should gauge their feelings about their diagnosis, their need to talk to someone about what they’re going through, and what tasks they anticipate needing help with. The American Cancer Society recommends creating a list of people to tell in person and others who should get the news from a friend or family member. Decide in advance how much detail to give.

When telling children about a health threat that will affect the whole family, consider the family’s usual way of dealing with sadness, as well as each child’s age and preparedness for difficult situations, suggests Karen Hurley, Ph.D., a psychologist at Cleveland Clinic. Giving children information in small chunks, conveyed with positivity but a note of realism, can work well, Hurley said in a talk to people with predispositions to hereditary cancers. Once the immediate family has been told, the American Cancer Society suggests that the patient consider the types of responses that make him or her feel angry or upset, and planning answers that will quickly put such conversations to rest.

To avoid repeated discussions about treatments and health status, patients can ask a loved one to set up a page on a website such as CaringBridge.org and share group updates with friends and relatives. Those finding it difficult to discuss their feelings with loved ones may benefit from joining an in-person or online support group or consulting with clergy, nurses, mental health professionals and/or patient navigators.

As patients begin to tell others about their diagnosis, they could feel pressured to maintain a positive attitude, which can be difficult when they are scared, anxious or not feeling well. False optimism is not only unrealistic, but an unnecessary burden. There is no solid evidence that emotional outlook affects survival, yet people unaffected by cancer often expect and encourage those with the disease to stay positive despite how they are really feeling. People’s reactions to cancer differ greatly. Patients should remember that it’s their experience and there is no need to feel they have to please others by the way they cope with it.

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How to recognize normal reactions when diagnosed with cancer and how to know when help is needed.

Dealing With Emotions

Every patient faces unique issues during and after treatment. In the past, oncologists focused primarily on treating the cancer, overlooking some issues related to the patient’s age. But now, doctors are increasingly concerned about the effect of treatment on a person’s future, including treatment-related long-term effects.

Younger patients often have to contend with unique challenges, such as coping skills, social concerns, behavioral issues, employment matters and treatment-related infertility. Doctors should discuss these issues, particularly fertility preservation options with all fertile patients — male or female — or, in the case of children, with their parents or guardians.

A single cancer treatment can affect fertility, so it is essential that a patient’s doctor develop a fertility preservation plan before treatment begins. This might mean delaying treatment to accommodate fertility preservation methods, such as banking sperm or freezing eggs.

For example, prostate and testicular cancer therapies can affect sperm production, resulting in low sperm count or infertility. Banking sperm is a proven technique for men wanting to preserve fertility. If sperm count is low, a process called intracytoplasmic sperm injection requires only one sperm to fertilize an egg. Another technique is testicular sperm aspiration, in which sperm is taken directly from the testicle or from resected testicular tissue. It is used in men with low sperm count.

For women, certain chemotherapy drugs and hormone treatments, as well as radiation to the pelvic area, can damage the ovaries and other reproductive organs or cause early menopause. Because women are born with a limited number of eggs, or oocytes, damaging them during cancer treatment can leave a woman infertile.

If treatment calls for radiation to the pelvis, the doctor may be able to preserve the ovaries by doing a procedure that moves them away from the radiation field. Treatments that temporarily shut down ovarian function during chemotherapy are also being studied as a means to prevent damage to eggs.

Another option may be in vitro fertilization (IVF), in which an egg is fertilized in the lab and frozen, or cryopreserved, and later thawed and inserted into the uterus. Egg retrieval must be done before treatment and could require several weeks to obtain viable eggs. Hormone injections might be given to promote egg development, but natural methods are also available. IVF can be performed with donor sperm and embryos.

While freezing unfertilized eggs is possible, the success rate is lower than it is for freezing embryos. Once thawed, the egg is fertilized by intracytoplasmic sperm injection and inserted into the uterus, and better freezing and fertilization techniques are improving success rates. Researchers are also exploring ways to freeze testicular and ovarian tissue to be transplanted back into the patient after therapy.

Insurance coverage of fertility care varies, and the cost can be high. Depending on a patient's plan, some treatments might be provided, especially if they are part of a necessary medical procedure being performed anyway.

Recently, laws requiring health insurers to cover fertility preservation for patients with cancer have been enacted in California, Connecticut, Delaware, Illinois, Maryland, New Hampshire, New York and Rhode Island. To find out if your state has proposed or passed such legislation, visit allianceforfertilitypreservation.org/advocacy/state-legislation.

Kids and Adults: What’s the Difference?

The difference between childhood and adult cancers rarely comes down to simply age. Most tumors in children differ biologically from those in their adult counterparts, typically due to the cell type from which the cancer originates.

In the weeks after fertilization, the embryo develops into layers: ectoderm, mesoderm and endoderm. These layers are the foundation for the development and maturation of tissues and organs in the body.

Adult cancers, such as lung, breast and colorectal, typically develop from epithelial tissue (adenocarcinomas), which come from the ectoderm or endoderm. Epithelial cells make up the skin and lining of the internal organs and glands. Alternatively, childhood cancers, including sarcomas (cancers of the bone or muscle) and leukemias (blood cancers), most often develop from the mesoderm.

Like adult cancers, many childhood cancers form from genetic changes in cells. Only a small number of childhood cancers are caused by a genetic change inherited from a parent. It isn't clear what causes the rest, but unlike cancers in adults, cases in children don't typically result from lifestyle factors, such as smoking or sun overexposure. It’s important for parents and children to know that there’s nothing they could have done to prevent the cancer.

Researchers have proposed that biological differences could point to why childhood cancers are often more responsive to chemotherapy, which is designed to target rapidly dividing cells. Epithelial cells are normally resilient because they are exposed to environmental influences, making them more resistant to treatment if they become cancerous. Vulnerable childhood cancer cells, however, are ideal targets for chemotherapy. Indeed, childhood cancer survivors are less likely to experience recurrence than adults, and the five-year survival rate across all childhood cancers for the years 2008-2014, 83%, is higher than that for adult cancers, 69%.

Childhood cancer is rare, with 11,060 new cases having been expected during 2019, according to American Cancer Society data. Although the incidence of these cancers has risen by 0.6% per year since 1975, the death rate for cancer in children ages 0 to 14 declined by two-thirds from 1970 to 2016, mainly because of better treatments and more participation in clinical trials.

Special Centers May Help Teens, Young Adults

Teenagers and younger adults may benefit from care in hospital sections dedicated specifically to adolescent and young adult (AYA) patients.

These inpatient and outpatient care units support the medical, social and psychological needs of patients facing the interruption of their schooling, newfound independence, careers and/or family planning. Patients with cancer who fit into the AYA population may want to consider seeking treatment at a facility that has one of these units, or ask what kind of specialized support their treating institution offers to people in their age group.

Teen Cancer America has a list of a number of these facilities at teencanceramerica.org/ourwork/hospitals.

Cancer is primarily a disease of aging. For many common cancers, the development of a tumor takes considerable time, dependent on a series of often unrelated events at the cellular level. Over the course of years, genetic changes and environmental toxins, such as tobacco, can cause DNA-damaging effects on cells. Meanwhile, the body’s ability to repair damaged cells appears to decline with advancing age. At the same time, the aging tissue around those damaged cells appears to play a role, creating a more conducive environment in which malignancies can grow. As cells age and stop dividing, it’s speculated that they develop a microenvironment that fosters cancer’s development. Another potential contributory factor, researchers say, is the declining immunity that naturally occurs with advancing age.

To complicate matters, many older people who receive a cancer diagnosis already suffer from at least one other illness, or comorbidity, such as heart disease, diabetes, hypertension or arthritis — some of which could be life-threatening.

Comorbid illness affects all aspects of cancer care, from early diagnosis to treatment options and prognosis. In fact, as patients with cancer are living longer, comorbid illnesses have a greater effect on long-term health. Patients with pre-existing illnesses may be less likely to survive their cancers and may face a greater risk of recurrence.

To get appropriate and effective cancer treatment, patients should be evaluated, not only in terms of the physical effects of the cancer, but also for any other health issues they might have. Cancer drugs often have side effects that aggravate other medical conditions, and drug contraindications can create additional problems.

For example, one proteasome inhibitor treats multiple myeloma and mantle cell lymphoma, but can cause pain and numbness in the hands and feet — known as neuropathy — that could be worse in people with diabetes, who are prone to nerve damage.

Hormone therapy blocks the production of male or female hormones. For instance, aromatase inhibitors for breast cancer block estrogen production. Because estrogen helps maintain healthy bones, blocking it can increase the risk for osteoporosis or cause problems if a patient already has osteoporosis.

Other cancer drugs, including monoclonal antibodies for HER2-positive breast cancer and anthracyclines for leukemia and some solid tumors, could worsen heart conditions, which are more common among older people. These drugs can injure the heart muscle, so patients must be monitored closely, and the dose of the drug might be limited based on heart function.

Side effects do not always mean that certain cancer drugs cannot be given if patients have another illness. Instead, doctors might adjust the dosage of medication — both for the cancer and other illnesses — so that patients can receive the most effective cancer therapy.

Older patients with cancer should not automatically receive less aggressive therapy than younger patients. Age no longer matters as much as general fitness when it comes to eligibility for cancer treatment. Despite the prevalence of other common illnesses and the perception that older people are less likely to benefit from and cope with the stress of treatment, they typically fare equally well in overall survival and quality of life as their younger counterparts.

Regardless of when patients receive their cancer diagnosis, their age affects the next step.

Considering Age-Related Issues With Cancer

It's unfortunate but true that minority populations within the cancer community sometimes have trouble accessing appropriate care or experience worse health outcomes after treatment. Some groups experience a higher relative incidence of cancer and a greater chance of disease complications or death. Also, patients who face barriers to health care may miss out on the chance to be screened for cancer so that the disease can be discovered in its earliest and most treatable stages.

So, it’s helpful for members of these underserved groups to be aware of any obstacles and, if faced with them, speak up or seek support.

 It can be difficult to obtain consistent, expert health care for people who live in rural areas, which often face a shortage of oncologists and are far from top cancer hospitals. These patients should know that they may be able to have an oncologist at a large cancer center direct their are largely from afar with the help of telemedicine, so that they can receive most of their treatments at local facilities.

 Statistically, patients with lower education and income levels experience worse health outcomes after cancer than do their counterparts who've had more years of schooling, bring in higher salaries and have some form of health insurance. People affected by poverty also may have higher rates of smoking, lower rates of exercise and breastfeeding, more obesity and drinking and a greater risk of exposure to dangerous pollutants in their neighborhoods, all of which are risk factors for cancer.

It’s particularly important for these individuals, if they don’t have a diagnosed cancer, to get annual well visits, report any unusual symptoms and get all the cancer screenings for which they are eligible. Those in this group who do have cancer can ask for help from a patient navigator or social worker at their care facility if they are having trouble making, keeping, affording or getting to appointments or sticking with the treatments prescribed to them. Patient advocacy groups may also be able to offer help; check our list of resources at 

 Not surprisingly, health opportunities and outcomes tend to be worse for those who are uninsured or underinsured. People in this group can check the national health care marketplace website, healthcare.gov, to see if they qualify for insurance that is subsidized by the government or free through Medicaid. In addition, some patient advocacy groups may offer financial help or other support programs to individual patients and pharmaceutical companies may offer discounted or free medications.

 Ethnic and racial minorities who have cancer don’t always benefit from full access to care or participate in clinical trials at the same rates White patients do. This can mean that trial results don’t fully represent the usefulness of drugs in those populations. Socioeconomic factors can be one reason for the lack of participation, but another could involve a cultural reluctance to pursue treatment.

For instance, distrust of the health system among Black patients dates, in part, to the 1932-1972 study of untreated syphilis in Black men, conducted by the U.S. Public Health Service and the Tuskegee Institute. Participating men were not given the opportunity to provide informed consent or given adequate treatment to cure their illness, even when penicillin became the standard of care in 1947, according to the U.S. Centers for Disease Control and Prevention (CDC). One resource working to alleviate this concern is BlackDoctor.com, which helps readers find doctors who are likely to be culturally sensitive.

Language and cultural barriers may also stand in the way of care. For instance, Spanish-speaking Hispanics are less likely to be screened for colorectal cancer than Whites or English-speaking Hispanics.

Furthermore, in some instances, members of specific ethnic or racial groups have worse health outcomes because of genetic predispositions for aggressive or hard-to-treat cancers. Triple-negative breast cancer, which disproportionately affects Black women, is an example of this. In addition, some skin cancers that are difficult to treat affect Black patients disproportionately, and Black patients are twice as likely as White patients to get multiple myeloma. American Indians/Alaska Natives, meanwhile, are the most likely to get liver cancer and cervical cancer and to die from kidney cancer.

Patients who are in these groups or have family histories of cancer can speak with their doctors about increased screening or other preventive measures. They can also call their state health departments to ask about any free cancer-screening programs avail- able for underserved populations. The CDC offers one that provides breast cancer screening, which can be found at cdc.gov/cancer/nbccedp/screenings.htm.

 Members of the LGBTQ+ community, which includes people who are lesbian and gay, also face barriers to good, consistent health care. LGBTQ+ people face a higher risk of cancer and a lower likelihood of having health insurance. Furthermore, they may face discrimination and isolation, which could lead to a higher likelihood of smoking and drinking, behaviors that raise the risk of cancer. Finally, discrimination from health care providers, or the fear of it, may lead patients to delay or avoid medical care.

Some patient advocacy groups that may be able to help are the National LGBT Cancer Network (cancer-network.org) and CancerCare (cancercare. org/questions/242), which offers support groups and other resources.

Overall, patients who are aware of these disparities and willing to serve as their own advocates are the most likely to contribute to the protection of their health and obtain appropriate cancer care.

Members of underserved populations may need to take action to overcome obstacles to cancer care.

Overcoming Barriers to Care

Many patients worry about job security and maintaining their health insurance coverage, and push themselves to work through cancer-related pain and fatigue. Yet balancing cancer treatment and work is possible with a proactive plan, accommodating employers and medical advances that include less toxic treatments and medication to alleviate side effects. Almost half of all patients with cancer receive their diagnosis before age 65; up to 60% will continue to work during treatment. Of those who stop working during treatment, up to 80% might return to the workforce at some point. 

Cancer stereotypes have changed dramatically, but patients, as well as employers, might still make assumptions about how a diagnosis will or will not affect work. Experts recommend having a plan in place before discussing a cancer diagnosis at work. Patients should:

Enter into the conversation with supervisors and coworkers with as much knowledge as possible and not be afraid to suggest what would work best for them during treatment.

Develop a communication strategy with supervisors and coworkers that includes goals, a treatment schedule, possible side effects, delegation of job duties, whether to tell anyone about the diagnosis and whom to tell about any medically related limitations.

Explore the company’s policy on sick leave, telecommuting and flex time.

Talk with your medical team about what would make treatment easier, such as whether oral medication is available and how to alleviate side effects.

Explain to supervisors that the situation could change depending on how treatment goes and how it affects work performance in the long run. Be upfront about what can and cannot be expected.

Ask to decrease the workload, work from home or take time off from the job because of treatment schedules or side effects, such as fatigue or nausea. Scheduling chemotherapy late in the week can provide a weekend to recover.

The rate of job discrimination against patients with cancer and survivors has decreased, partly because of protections from the Americans with Disabilities Act (ADA) and other antidiscrimination laws that keep survivors from being treated unfairly in the workplace.

Discrimination that does occur is often a result of misconceptions regarding cancer and a patient’s ability to work. Experts recommend that patients experiencing discrimination take legal action only as a last resort. Instead, they should familiarize themselves with their company’s policies and talk with the human resources department about their issues and possible solutions. Often, information from social workers or the medical team and support from coworkers can resolve a situation. If legal action is the only alternative, patients should keep written records of all actions and communications.

Although patients have the right to keep their diagnosis confidential, it is recommended they disclose their cancer history to their employer in case it affects their job performance and they want accommodations under the ADA. Patients who work for companies with at least 15 employees must be reasonably accommodated, which can include a change in job duties or flex time.

The Family and Medical Leave Act (FMLA) also protects jobs at companies with 50 or more employees for up to 12 weeks of unpaid leave and guarantees the continuation of benefits.

Caregivers can also take advantage of the FMLA. To qualify, they must have worked more than 1,250 hours for more than one year and intend to return to the job when their leave is over.

Choosing to stay in the workforce through treatment requires planning ahead.

Balancing Cancer and Work

Cancer tends to produce a ripple effect: Its impact on physical and emotional health often leads to changes in how and when people work, which, in turn, can create significant financial challenges.

Among the work-related questions of people who have cancer: Can I keep working? Will I lose my paycheck or my health insurance? Could I get fired if I take time off to have treatment or because I don’t feel well? Can my work tasks, hours or environment be modified?

Fortunately, both state and federal laws protect the rights of working people with cancer, but it’s important to understand which laws might apply to an individual’s situation, says Rebecca Nellis, executive director of Cancer and Careers, a New York City-based national nonprofit organization that helps people naviCANCER TENDS TO PRODUCE a ripple effect:
Its impact on physical and emotional health often leads to changes in how and when people work, which, in turn, can create significant financial challenges.

Fortunately, both state and federal laws protect the rights of working people with cancer, but it’s important to understand which laws might apply to an individual’s situation, says Rebecca Nellis, executive director of Cancer and Careers, a New York City-based national nonprofit organization that helps people navigate the intersection of work and cancer. “The law is a tool that can make things easier,” she says, “but understanding your rights and dealing with them at work are two very different things. You need to know what you have access to and how to make it work for you in your job at your company.”

Lack of a specific legal protection, however, doesn’t mean a person who has cancer can’t work. “All hope isn’t lost if the law isn’t a tool for you,” Nellis says. Some patients find protection and help via company policies and supportive supervisors. Each workplace has its own culture, and it’s critical to understand what that entails, she says. “Someone’s work experience and their response to it is as unique as their cancer treatment plan and response to it,” Nellis says.

If someone is concerned about the effect of a cancer diagnosis on their job or health insurance, they should learn how federal and state laws may protect them. Generally, three major federal laws offer protection to workers: the Americans with Disabilities Act (ADA), the Family and Medical Leave Act (FMLA) and the Affordable Care Act.

Generally, the ADA protects someone who works for a private employer with 15 or more employees or for a state or local government, labor organization or employment agency. (In federal agencies, employees are typically covered by the Rehabilitation Act of 1973.) To be protected by the ADA, an employee must be considered a “qualified individual” — someone who can perform the job’s essential functions, with or without reasonable accommodations, and has a disability. According to the ADA Amendments Act of 2008, a disability is defined as a physical or mental impairment that substantially limits a “major life activity,” such as the ability to walk, breathe, concentrate or sleep. Individuals with disabilities also include those who have a history of a substantially limiting impairment. According to the U.S. Equal Employment Opportunity Commission, people who have cancer or are in remission typically are protected by the ADA.

In addition to making discrimination in employment practices unlawful, protections under the ADA include “reasonable accommodations,” such as changes to workspaces or schedules, using technology to assist with job duties, more frequent breaks and telecommuting.

The FMLA allows eligible employees to take up to 12 weeks of job-protected unpaid leave each year, with continuation of group health insurance coverage, for their own serious medical condition or to care for a child, parent or spouse with a serious condition. Generally, this applies to private employers with 50 or more employees, along with certain public agencies and employers, regardless of number of employees. To learn more, visit dol.gov/whd/fmla.

And to learn about how this law might protect employees during the COVID-19 pandemic, visit triagecancer.org/eligible-paid-fmla-leave.

Additional information about returning to work or taking time off due to the COVID-19 pandemic can be found at 

, and a host of relevant articles are archived at triagecancer.org/category/covid-19 and at cancerfinances.org in the COVID-19 module.

The Affordable Care Act gave consumers of health care new rights and benefits, offering additional health insurance options for people with employer-sponsored insurance if they need to leave a job, according to Monica Bryant, chief operating officer for Triage Cancer, a national nonprofit organization that provides education on the practical and legal issues of people with cancer. The law also helps people qualify for a special enrollment period to buy insurance on an exchange, go back on their parents’ insurance plan if they’re under age 26 or potentially qualify for Medicaid. To learn more, visit healthcare.gov.

Another federal law of note is the Genetic Information Nondiscrimination Act of 2008, which prohibits employers with at least 15 employees from using genetic information to make decisions about hiring, promotions, compensation, termination and other employment matters. The law helps protect employees from discrimination based on genetic testing — for example, if an employer with a self-funded insurance plan inadvertently gains access to medical information through claims data. “Your company might know if you’ve had a BRCA test,” Bryant says. “Ultimately, they’re not supposed to make decisions based on that knowledge.”

Other federal laws that help people keep and use their group health insurance include the Employee Retirement Income Security Act of 1974, which offers appeals protections to people who’ve been denied coverage, and the COBRA health insurance law. Officially called the Consolidated Omnibus Budget Reconciliation Act, it helps people maintain their health insurance after they’ve left a job or reduced their working hours.

Although federal laws provide protections to employees who qualify, it’s important to understand applicable state laws, too. “I cannot stress the importance of state laws enough,” Bryant says. “The problem is that so many times, people don’t know what they don’t know.”

Comprehensive online resources like Triage Cancer provide a good starting point by listing state resources. A person can also contact their state’s Department of Labor or Equal Employment Opportunity Commission.

Another important source of protection might be found in a company’s employee manual. “Know your employer’s policies and follow their processes,” Bryant says. “If other employees are already telecom- muting, it’s easier to get that as an accommodation. Laws are the bare minimum of what an employer has to provide.”

Nellis suggests pulling together all information about possible aid, including benefits and company policies. “Think about your own work environment and come up with a strategy,” she says. “If you want to stay at work, think strategically about how to make it work. It’s easier to do when you’re protected by state or federal law, but the law is just one way.”

One of the biggest concerns for people with cancer is disclosure — how much they need to tell their employer. The short answer? Less than a person might think. “Disclosure doesn’t mean every detail of what you’re going through,” Nellis says. “Disclosure isn’t all or nothing. It’s a spectrum.”

Approaches regarding disclosure are as individual as workers themselves. “Some folks want to keep things private and schedule all their treatments in the early morning or evening,” says Shelley Fuld Nasso, chief executive officer for the National Coalition of Cancer Survivorship in Silver Spring, Maryland. “Some survivors want to continue working for the sense of normalcy, while others don’t have a choice.”

Those who want to keep information about their illness private are entitled to do so; however, they may have to disclose some information to access reasonable accommodations or rights under the FMLA, Bryant says.

Pay attention to medical certification forms, she advises. An employer is entitled to have a health care provider certify a medical condition before providing a reasonable accommodation, but Bryant encourages people with cancer to have a conversation with their doctor about what will be disclosed. “For example, a health care provider can certify that an employee has severe nausea or fatigue,” she says. “The certification doesn’t have to mention chemotherapy.”

If someone decides to disclose their illness, Nellis suggests framing the situation as fluid. “Be clear that this is what you know right now, but things can change,” she says. “Set up an open line of communication.”

For people who worry about how treatment might affect their ability to do their job, Nellis suggests a proactive approach, such as keeping a work diary. “You might keep a record of the date you decided to disclose and who you disclosed to,” she says. “You might acknowledge that you had a challenge at work that involved slipping up on a project.”

She also suggests recording details about projects, keeping emails and voicemails as reminders regarding work in progress, and scheduling blocks of time for focused work.

“Done together, these things might create a safety net,” she says. “Remember the employer’s lens. Set expectations by saying ‘I recognize that we need to get X, Y and Z done. Here’s how I think this could happen.'”

Both Nellis and Bryant advise people with cancer to consider their employment future when deciding how much to disclose on the job. “We have people say, ‘My employer is so great,’” Bryant says. “But you may not have that job or supervisor forever. Disclosure is a bell you can’t unring. You have the legal right to access benefits without disclosing.”

And if someone feels they have been treated differently or discriminated against because of their cancer? The response depends on a person’s goals, Bryant says. “If all you want is to be the best employee you can be, you might have a conversation with your supervisor,” she says. “Other people no longer want to work for that employer and want to teach them a lesson.”

Still, she encourages people to pause before taking legal action: “We don’t want people to jump to filing a lawsuit if there are things in between they can do.”

Understanding federal and state laws can protect workers who have cancer.

Knowledge Is Power

A number of things must be considered before a doctor can offer treatment options for cancer. The doctor must know how much cancer is in the patient’s body, where it is located, whether it has spread, and the specific type of cells that make up the tumor and how aggressive they are.

In addition to conducting laboratory tests to diagnose diseases in general, pathologists also conduct specific tests on the cancer to determine a number of factors, including the type of cancer cells, the grade of the cancer, the size of the tumor, the extent the cancer has invaded the surrounding tissue and whether the cancer has spread to lymph nodes and other locations in the body. This information, compiled in a pathology report, provides patients and their medical teams with essential information to help them determine the best treatment. The pathologist first looks at the tissue with the naked eye in a “gross examination.” Its appearance and characteristics, such as size, weight, color and texture, are recorded.

If an entire tumor or lesion has been removed, it is microscopically measured from the edge of the malignancy to the edge of the removed tissue, which should include healthy tissue. If cancer cells are found at the edge, that is considered a positive margin, suggesting that more cancer cells could remain in the body. This means that more surgery or other treatments might be needed to try to remove or kill any remaining cancer cells. A negative or clean margin means there are no cancer cells found at the edge of the removed tissue.

Once removed, the specimen is cut into thin slices by the pathologist for further testing. The pathologist examines the tissue under a microscope, but other techniques are sometimes used to identify factors involved in the abnormal growth of cells, including fluorescence in situ hybridization (FISH) and immunohistochemistry (IHC) or other molecular tests to identify mutated genes that might help to drive the cancer. Many tumor characteristics identified by these tests can be important in choosing the right treatment.

As the technology to examine cells has become more advanced, pathology offers more extensive information about which treatments will be most effective.

Patients should ask their doctors about the cancer’s pathology to learn as much as possible about why a certain treatment is recommended and how it will work against the cancer.

If the patient’s cancer is very rare or if the doctor thinks the pathologist’s diagnosis is inconsistent with the patient’s symptoms and other test results, a second opinion might be appropriate.

The pathologist provides a number of evaluative elements that can help patients understand their tumors. A tumor’s grade describes how abnormal the cancer cells appear under the microscope.

Factors that go into deciding the grade vary, but usually include the size and shape of the cell’s nucleus, the proportion of cancer cells that are dividing and the patterns the cells form as they join. If many cells are dividing, it can be a sign that the cancer is aggressive.

Cancer cells that look more like normal cells usually grow and multiply slowly and are described as being low grade, well differentiated or grade 1. Conversely, cancers that do not resemble normal tissues are called high grade, poorly differentiated or grade 3 or 4. The attributes are combined into an overall tumor grade that ranges from 1 to 4 depending on the cancer type.

Grading systems vary depending on if the cancer is a solid or liquid tumor, and what type of cancer has been identified. For example, the grading system for prostate cancer ranges from 2 to 10. Patients should ask their doctors what factors go into grading the tumor and the scale used.

Regardless of the system used, lower numbers signify less aggressive cancers, and higher numbers more rapid growth. Tumor grade is an important indicator of prognosis in some cancers, such as brain, breast and prostate, as well as lymphoma and soft-tissue sarcoma.

Many cancers are also staged from 0 to 4, with 4 usually indicating that the cancer is metastatic. Solid and liquid tumors are staged differently, and the staging of certain cancer types may differ. So, patients should try to understand how their cancer is staged and how important this information is for their cancer type. 

Staging for most cancers is based on the following:

The number of tumors and whether the cancer has spread to nearby organs and tissues, including the lymph nodes.

Whether the cancer has spread (metastasized) to distant organs or tissues.

For some cancers, such as bone and soft- tissue sarcomas, the grade is considered when the cancer is staged. In addition to what is contained in the pathology report, data used for staging are gathered from physical examinations and imaging tests, such as X-rays, computed tomography (CT) scans, positive emission tomography (PET) and bone scans and magnetic resonance imaging (MRI) scans. 

TNM staging uses three characteristics of the cancer. The T refers to the primary tumor (the place where the cancer began); the N refers to the level, if any, of lymph node involvement; and the M refers to the presence or absence of metastasis. The meaning of these letters and numbers might vary for different types of cancer; some cancers might not have N3 as a category, and in other cancers, the classifications might have subcategories, such as T3a or T3b. Patients should ask their doctors about the staging system for their cancer.

Once these factors are known, an overall number is assigned. Patients who are treated and then experience a recurrence might have their cancer restaged. A restaged cancer often is indicated by inclusion of the letter “R.”

Newer chromosome tests and the analysis of multiple genes at a time (known as gene pro- filing) could subclassify the cancer and help determine prognosis and individual treatment. That's why the 8th edition of the American Joint Committee on Cancer staging system integrates grade and biomarker/molecular data, as well as anatomical indices.

Besides stage and grade, the patient’s cancer type, treatment and health influence prognosis. But understanding what is the cancer’s stage and grade mean can help patients and their care teams choose the best course of action.

The extent of cancer, what it looks like and where it is will guide diagnosis and treatment.

Understanding Pathology and Staging

When cancer is diagnosed - whether the condition is inherited or not - it's essential that patients and their doctors consider whether the disease is driven by any faulty genes or proteins that are treatable with targeted drugs or immunotherapies.

If tests of tumor tissue at biopsy or before surgery show this is the case, patients may be able to take drugs that specifically target these glitches, rather than chemotherapies that affect their whole bodies. For some, targeted drugs or immunotherapies can be more effective and cause fewer side effects than chemotherapy, or sometimes they are given with chemotherapy. Targeted drugs work by disabling the activity of genes, proteins or tissue environment that contributes to cancer. Immunotherapy boosts the body's natural defenses against cancer.

The Food and Drug Administration (FDA) has approved targeted drugs for the treatment of a variety of cancers, including lung, which can be driven by EGFR mutations, ALK rearrangements or the very rare ROS1 mutations; melanoma, which can arise from the BRAF mutations; breast, which can overexpress the protein HER2; and colorectal, which can feed off the overexpressed proteins EGFR or VEGF. Targeted drugs known as PARP inhibitors have been approved by the FDA in advanced or previously treated breast, ovarian, prostate and pancreatic cancers driven by mutations to the BRCA or other genes. There is a growing number of cancers for which targeted therapies have been approved, including lung, stomach, bladder, cervical, brain, head and neck, skin, kidney, liver, gastrointestinal stromal tumor, endometrial, colorectal, esophageal, thyroid and some blood diseases.

In addition, immunotherapies known as checkpoint inhibitors work against a growing number of cancers, including lung, melanoma, head and neck, bladder, liver, stomach, cervical, Hodgkin lymphoma, squamous cell carcinoma of the skin and some kidney and breast cancers, mainly by targeting the proteins PD-1 or PD-L1. Two of these drugs are approved to treat several advanced cancers that have abnormalities in their ability to repair damage to their own DNA, including certain colorectal and endometrial cancers.

Scientists are finding that cancers that originate in different parts of the body may share the same mutations. That means that, even if there is no targeted treatment approved for a particular cancer, there may be one on the market, or in clinical trials, that could work for a patient based on the mutations their disease expresses. Furthermore, new treatable mutations may emerge as a cancer progresses, or in response to therapy.

Therefore, it’s important that patients diagnosed with cancer or a recurrence ask their doctors to test them for any mutations that are known to be targetable with drugs.

TREATING GENETIC MUTATIONS, NOT CANCER TYPES

Although most treatment is based on where the disease developed in the body, such as the breast, colon, prostate or liver, a growing trend focuses on treating a cancer based on the genetic mutations that drive it.

The FDA has approved a number of drugs to treat several cancer types that develop due to the same mutations. A few examples: Herceptin (trastuzumab), which treats cancer that expresses too much of the protein HER2, can be used for both breast and stomach cancers. Avastin (bevacizumab), which slows the growth of blood vessels needed to support a tumor, is approved to treat colorectal, lung, kidney, cervical and ovarian cancers, as well as the brain cancer glioblastoma. A combination of Tafinlar (dabrafenib) and Mekinist (trametinib), which stop the proteins MEK and BRAF from stimulating out-of-control cell growth, can treat melanoma, non-small cell lung cancer and thyroid cancer.

Recently, the FDA approved some immunotherapies for even broader use. Keytruda (pembrolizumab) and Opdivo (nivolumab) can treat any cancer with microsatellite instability-high or mismatch repair-deficient status. These tumors have trouble repairing their own damaged DNA. The immunotherapies can treat any cancers that have this status, regardless of where they started in the body, marking the first FDA approvals of drugs to be given based on a cancer’s genetic mutations, rather than its type.

Another first occurred when the FDA approved a different drug for use across cancer types. Vitrakvi (larotrectinib) stops abnormal proteins that are generated by an NTRK gene alteration that stimulates cancer cells to grow. The agent is approved to treat any advanced solid tumor with the NTRK alteration. Also approved to treat that gene alteration is Rozlytrek (entrectinib).

Some clinical trials follow a similar principle when testing new cancer treatments. Basket trials enroll patients with any cancer type, as long as it is driven by a specific genetic mutation, and give them a medication that targets the problem. Alternatively, umbrella trials enroll patients with the same underlying origin of cancer, such as breast or pancreatic, but gives them different targeted therapies based on the mutations that make their cancers grow. In Lung-MAP (lung-map. org), for example, patients with lung cancer are receiving different medications based on the mutations driving their disease, and NCI-MATCH (

) is enrolling patients with various types of solid tumors and lymphomas and treating them based on the mutations their cancers express.

Knowing what genetic alterations drive a cancer can guide treatment.

Understanding the Genetics of Cancer

Many cancers begin as a fluke mutation in a single cell. Yet in up to 10% of cancer cases, one or more mutations wind their way through family trees with a chance of affecting each new member. When mutations are deemed hereditary, 

also known as "germline," they are present in every cell, including egg and sperm, and can thus be passed on to subsequent generations.

Each person has 46 chromosomes — 23 from each parent — that contain 20,000 to 25,000 genes. These chromosome pairs allow for a backup, so a mutated gene’s healthy counterpart can code for the correct protein. For a hereditary cancer to develop, both copies of the gene must be affected, although it is also possible to develop such a cancer if one mutated 

gene is inherited and its backup develops a mutation later in life.

Inheriting a mutation doesn’t mean it’s certain that someone will develop cancer, but it does put that person at risk. Researchers have identified many inherited mutations that account for more than 50 hereditary cancer syndromes.

For instance, the lifetime risk of developing breast cancer or ovarian cancer is significantly increased for a woman if she inherits a BRCA mutation. In addition to breast cancer and ovarian cancer in women, BRCA mutations are associated — to a lesser degree — with an increased risk of fallopian tube cancer and peritoneal cancer in women, 

breast cancer and prostate cancer in men, and pancreatic cancer in both men and women.

For patients with breast cancer and ovarian cancer, early identification of a BRCA mutation will significantly help in creating a treatment plan. Patients who test positive for a BRCA mutation may respond to certain therapies better than those who do not have the mutation, and may be eligible for different clinical trials.

Inherited gene mutations can’t be repaired, but they can be found through genetic testing. Requiring little more than a simple blood draw or saliva sample, genetic testing is now available for dozens of hereditary cancer syndromes, which are caused by alterations in genes that suppress or activate tumor growth. But genetic 

testing should only be done within the framework of genetic counseling.

Genetic counselors help patients decide whether to undergo genetic testing and help them understand the results and provide context. Working with genetics professionals, patients and their families can explore the possible consequences of genetic testing and develop realistic expectations of what might or might not be learned in the process.

Patients might be candidates for genetic testing if they have one or more of the following:

Early-onset cancer (usually before age 50).

A strong family history of cancer or the presence of rare cancers.

The details of what constitutes “early-onset” or “strong family history” vary according to the cancer type or specific genetic mutation. A pedigree is created based on family history of cancer to determine who will most likely benefit from genetic testing.

Testing can provide information that either confirms high-risk status or rules out the presence of a genetic alteration found in other family members. For those who test positive for certain genetic mutations, increased screening might be needed. Some patients might also consider chemoprevention strategies to help 

lower their risk of second cancers or recurrence. In other cases, cancer could be prevented with prophylactic procedures, such as surgery, or behaviors.

Because gene alterations often predispose individuals to many types of cancer, identifying genetic status early can aid in diagnosis and medical decision making. It can also alert relatives that they might benefit from genetic testing, cancer screening and prevention measures.

Not everyone suspected of having a genetic mutation should necessarily be tested, for example, if the results wouldn’t alter the patient’s medical course.

Patients considering genetic counseling should visit 

cancer.gov/cancertopics/genetics/directory

Taking Charge of Your Own Genetic Testing? Take Some Precautions, Too.

People who suspect that they are predisposed to a certain inherited cancer, and who want to be tested to find out if they specific gene mutations, have a growing variety of genetic tests from which to choose.

Testing of a person's DNA is offered for many of the more common inherited syndromes that can cause cancer, including hereditary breast cancer and ovarian cancer syndrome, caused by mutations in the BRCA1 or BRCA2 genes. Others, each caused by specific gene mutations, include Li-Fraumeni syndrome; Cowden syndrome; Lynch syndrome; familial adenomatous polyposis; retinoblastoma; multiple endocrine neoplasia type 1 (Wermer syndrome); multiple endocrine neoplasia type 2; and Von Hippel-Lindau syndrome.

The tests for these mutations, many of which can look for multiple mutations associated with a specific disease, are often prescribed by a physician and require a small sample of body fluid or tissue, such as blood, saliva, cells from inside the cheek, skin cells or amniotic fluid. The tests are then sent to a lab and later returned to a doctor or genetic counselor, who can explain the results to patients.

However, there are tests out there that can be taken without a doctor’s prescription or guidance. These are called direct-to-consumer (DTC) genetic tests that are often marketed to people online. They can be purchased via the internet or at local drug stores and may require a cheek swab or saliva sample that people can send through the mail. Test results are then sent back via mail, online or over the phone. These tests look for mutations to the BRCA genes, to those linked to Lynch syndrome and to others associated with a few health issues not related to cancer.

While people are hoping to find answers about their genetic risks, they may not fully comprehend the results. This is a problem that the Food and Drug Administration and Centers for Disease 

Control and Prevention have pointed out with DTC genetic tests. Both agencies have stated that some of these tests lack scientific validity and should be taken in context only after a full medical evaluation.

The National Cancer Institute (NCI) advises seeing a genetic counselor, doctor or other health care professional trained in genetics to discuss results and what the next steps should be. These may include preventive care, screening, referral to support groups, the provision of emotional support and help with decisions about whether other family members need to be tested.

For those who do choose to go with a DTC genetic test, the NCI suggests using a laboratory that meets both state and federal testing guidelines. Currently, labs that perform genetic testing are subject to 

the federal Clinical Laboratory Improvement Amendments.

While their ease of access may make these tests appealing, they do not come without a price. The cheaper tests run about a couple of hundred dollars, and panels testing for multiple conditions or gene mutations can cost into the thousands. It’s important to note that, often, these costs are not covered by health insurance.

Before ordering a test, check the company's privacy policy, including its rules about giving data to police who request it.

Furthermore, there has been an uptick in unqualified "health advocates" promoting DTC genetic tests to consumers with promises of free testing to people who don't qualify for it, and who may use personal health care information to fraudulently bill insurance companies. To stay safe, start by asking questions of health professionals such as your primary care doctor, OB/GYN or oncologist, or checking the website of Facing Our Risk of Cancer Empowered at 

Patients should consider genetic testing when cancer runs in the family.

Identifying Your Genetic Risk of Cancer

For many people facing cancer, the internet is the first place to go for information. Whether they’re looking for help in making decisions about their illness or news about the latest treatment options, patients have greater access to cancer information than ever before. Many websites provide basic knowledge about certain types of cancer, current clinical trials and available support. Some offer information on research articles, doctors and hospitals, cancer treatment guidelines, drugs and complementary and alternative therapies. Always remember, not all information is good information. And bad information can hurt when it comes to cancer.

Cancer information on the internet comes from many different sources, such as expert health organizations, government agencies, universities, merchants, interest groups, the general public and scam artists. Many of these sources are people or groups that really want to help others learn more. But because anyone can post information on the Internet, some people could be passing along information that is wrong. Some will even try to deceive people.

When evaluating cancer information found on the internet, consider the source.

Cancer Guide: At Diagnosis