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Total Health

Cancer Resources

Reviewed By:
Martin E. Liebling, M.D., FACP

Introduction

Approximately 10 million Americans alive today have been diagnosed with cancer, according to the American Cancer Society (ACS). Some of these individuals were recently diagnosed while others are receiving cancer treatment, are in remission or are considered cured. Cancer poses different challenges for each of the patients who have the disease. These challenges may be physical, psychological, emotional or financial. There are a variety of resources available to assist patients and their families during their battle with cancer and afterward.

One of the first and most valuable resources a patient will encounter is the cancer care team. The cancer care team includes essential healthcare professionals who are involved in all facets of the patient’s diagnosis and treatment. The team can include:

  • Medical oncologist
  • Radiation oncologist
  • Surgeon
  • Nursing personnel
  • Pathologist
  • Social worker

Members of the cancer care team coordinate and oversee the patient’s treatment, answer questions the patient may have about the disease, refer the patient to appropriate organizations in the community and provided additional services as necessary.

Financial and medical assistance

Research has shown that cancer patients experience a significant rise in monthly expenses directly related to cancer. Because cancer and its treatments can take such a heavy economic toll on patients and their families, financial counseling and assistance is available through several organizations. For instance, the American Cancer Society (ACS) provides classes about financial issues that may arise during and after cancer treatment. 

Also, general assistance programs can provide necessities such as food, housing, child care and prescription medications, and may cover additional medical expenses if patients do not qualify for other programs. In some cases, medical expenses that are not covered by insurance may be deducted from a patient’s annual income prior to filing taxes.  Many community and religious groups also offer assistance.

Federal health insurance programs such as Medicaid and Medicare may help cover the cost of home health services, medical equipment and supplies and other services for qualified individuals. The State Children’s Health Insurance Program (SCHIP) is a national program operated by the states. It provides low-cost or free medical coverage to uninsured children of working parents with low wages. In addition, some pharmaceutical manufacturers and government programs offer assistance programs for individuals who cannot afford prescription medications. Recent changes to the federal government’s Medicare program has increased the availability of some prescription drug coverage for cancer medications. Patients can receive more information about financial assistance by speaking with their social worker, or another member of the  cancer care team.

Helpful contacts:

American Cancer Society (www.cancer.org)
Telephone: 1-800-227-2345

Medicaid (www.cms.hhs.gov/medicaidgeninfo/)

Medicare (www.medicare.gov)
Telephone: 1-800-633-4227

State Children’s Health Insurance Program (www.insurekidsnow.gov)
Telephone: 1-877-543-7669

Advocacy and legal assistance

Organizations such as the Patient Advocacy Program (PAP) and others advocate on behalf of cancer patients and provide legal services. This agency, as well as other organizations, assists patients with issues such as access to care, job retention and managing debt during and after illness. For instance, an advocate may help cancer patients receive necessary benefits, including food, utilities, insurance and child care. Attorneys who specialize in mediation and negotiation can assist patients with issues regarding disability accommodations in the workplace or denial of healthcare benefits. Patients can learn more about the PAP and similar programs by speaking with a member of their cancer care team or appropriate professionals in their community.

Helpful contacts:

Patient Advocate Foundation (www.patientadvocate.org)
Telephone: 1-800-532-5274

Lance Armstrong Foundation (www.livestrong.org)
Telephone: 1-866-235-7205

Nutritional support

Many cancer patients experience difficulty with nutrition from the disease and its treatments and benefit from various forms of nutritional support. Maintaining a healthy diet is especially important for individuals with cancer because their bodies often require extra energy to combat the disease. Additionally, cancer and its treatments can reduce a patient’s appetite, affect the body’s ability to tolerate certain foods, impair the absorption of essential nutrients and cause side effects that make eating difficult or painful. Nutritional counseling from a physician, dietitian or hospital nutritionist can help patients identify healthier food choices and alleviate many of the nutritional problems related to cancer and its treatments.

Helpful contacts:

The American Dietetic Association (ADA) (www.eatright.org)
Telephone: 1-800-366-1655

US Department of Agriculture (USDA), Food and Nutrition Information Center
(www.nal.usda.gov/fnic)
Telephone: 1-301-504-5414

Visitation groups

The American Cancer Society (ACS) and other organizations have many visitation groups that are maintained by cancer survivors and volunteers. For Breast cancer begins in the tissues, cells and ducts of the female or male breast.instance, Reach to Recovery is a visitation group for women who are dealing with  breast cancer. Trained volunteers who have survived breast cancer allow newly diagnosed patients to discuss their feelings, express their concerns and ask any questions they may have about the disease and its treatments (www.cancer.org or call 1-800-ACS-2345).

Support groups

Support groups provide a comfortable setting in which people with similar problems can share their emotions, concerns and questions with one another. Patients can usually find a support group that matches their needs from referrals from the social worker on the cancer care team. Groups can also be found through area hospitals, clinics or community agencies. There are many different types of cancer support groups, including, but not limited to:

  • Cancer type. These support groups cater to individuals with a particular type of cancer (e.g., breast cancer, prostate cancer, colorectal cancer, leukemia, lung cancer).

  • Stage of experience. These support groups address issues related to a particular stage of cancer (e.g., advanced cancer).

    Open or closed membership. Open-membership support groups allow members to attend as few or as many meetings as they wish. These groups may be ideal for patients who cannot commit to a regular meeting because of the demands of cancer and its treatments. Unlike open-membership groups, closed-membership support groups typically require preregistration, and members are generally required to attend a certain number of meetings. After a closed-membership support group achieves a certain mix or number of members, new members are no longer permitted to join.

  • Coping skills intervention group. These support groups focus on methods for coping with cancer and its treatments. Coping skill intervention groups are typically led by a skilled mental health professional, and techniques such as relaxation may be taught.

Some support groups communicate over the Internet or by telephone. This is convenient for patients who are uncomfortable in or unable to participate in a group setting. It is important to note that support groups are not limited to people with cancer. Friends and family members of cancer patients (e.g., parents of a child with cancer, spouses) may benefit from a support group as well.

Patients can ask a cancer care team member to recommend an appropriate support group or check their newspaper or telephone book for a listing of local support resources. Libraries, community centers, religious organizations, other patients and the Internet are also good sources for finding a support group. For more information, visit the American Cancer Society (www.cancer.org) or call 1-800-ACS-2345.

Cosmetic enhancement programs

Some types of cancer and cancer treatments can alter a patient’s appearance and affect their self-esteem. For example, hair loss is a side effect of chemotherapy, a common cancer treatment. Programs such as the Look Good Feel Better program provide free beauty advice and products to help patients restore their appearance and boost their self-esteem. The Look Good Feel Better program for women provides cosmetic consultations and materials (e.g., information pamphlets and instructional videos) as well as a complimentary makeup kit. Cosmetic consultations may occur individually or in a group setting.

The Look Good Feel Better program for men offers practical advice on coping with the side effects of cancer treatment, including hair loss, skin changes, stress and others. There is also a program for teenagers.

All Look Good Feel Better volunteers are trained and certified by the American Cancer Society (ACS). To find out more about this program and others like it, patients should consult a member of their cancer care team. For more information, visit www.lookgoodfeelbetter.org or call 1-800-395-LOOK.

Transportation and housing

Patients often live far from cancer treatment centers and may be too debilitated to drive themselves to treatment sessions. Many agencies, such as the American Cancer Society (ACS), Cancer Care and The Leukemia & Lymphoma Society can assist in transportation or transportation funding for these individuals.

In addition, programs such as the ACS’s Hope Lodge provide free temporary housing to patients who are receiving treatment in locations far from home. Hope Lodge provides patients and their families with private rooms and kitchen facilities as well as transportation to treatment sessions in some locations. Patients can find out more about Hope Lodge and similar programs by speaking with a member of their treatment team or contacting the ACS. For more information, visit the American Cancer Society (www.cancer.org) or call 1-800-ACS-2345.

Clinical trials

A cancer patient may be a candidate to participate in clinical trials or studies involving promising new or experimental treatment methods for cancers. Clinical trials are performed to determine whether or not treatments are effective and safe for use with patients. The patient’s oncologists can best determine which clinical trials are most appropriate for the patient and the steps for enrolling. Some potential benefits of participating in a clinical trial may include:

  • Obtaining treatments when standard treatments are not considered beneficial or are no longer effective

  • Increasing the number of available treatment options

  • More detailed monitoring of the cancer and any side effects

  • The possibility that part or all of the treatment costs will be paid by a study's sponsors

Government health agencies keep registries of cancer research programs accepting volunteers. Patients should discuss clinical trials with their physician before agreeing to participate. They should also recognize that there are many risks involved because people respond differently to treatments and the treatment methods have not been tested widely.

Home health care

Individuals with cancer often feel more secure and comfortable when they are cared for at home. Home health services allow patients to receive care in familiar surroundings with family and friends nearby. Sometimes a friend or family member will serve as the patient’s caregiver. However, many patients rely on home health agencies for the following services:

  • Nursing care
  • Providing medical supplies and equipment
  • Physical, occupational and speech therapy
  • Meal preparation or tube feedings
  • Assistance with household chores and errands
  • Assistance with bathing, dressing and grooming
  • Medication delivery
  • Transportation
  • Pain management
  • Cancer treatments (e.g. some chemotherapy)

Patients interested in home health care services should speak with a member of their cancer care team or contact their state or local health department for a list of licensed home care agencies. Medicaid, Medicare and other programs may offset the cost of home health care for some patients.

Helpful contacts:

The National Association for Home Care & Hospice (NAHC) (www.nahc.org)
Telephone: 1-202-547-7424

Hospice care

Also called palliative care, hospice care improves the quality of life of terminally ill patients who have less than six months to live. Hospice care may be provided in the patient’s home, in a medical facility, such as a nursing home, or in a hospice facility. Hospice utilizes medical personnel and volunteers to provide a number of services, including pain management, symptom control and psychological and spiritual well-being.

Additionally, hospice care supports family members during the illness and the grieving process. The majority of hospice care programs are run by independent, nonprofit organizations. Some are affiliated with home health care agencies, nursing homes or hospitals. Patients can learn about local hospice care programs from a member of their cancer care team. Questions to ask when evaluating hospice care programs may include:

  • Has the program been evaluated or licensed by the state?

  • Who composes the hospice care team, and what are their credentials?

  • How involved is the physician or family?

  • What types of service are available to the patient and family?

  • Where can the services be provided?

  • What methods will be used to manage the patient’s symptoms?

  • Will insurance cover the costs?

Helpful contacts:

The National Hospice and Palliative Care Organization (NHPCO) (www.nhpco.org)
Telephone: 1-800-658-8898

The Hospice Association of America (www.nahc.org/HAA/home.html)
Telephone: 1-202-546-4759

Hospice Net (www.hospicenet.org)

Respite care

There are also programs to help people who serve as primary caregivers for an individual with cancer or other chronic disease or disability. Respite care provides relief to a parent, spouse, child or other person who is tending to a patient’s needs at home.  

Various programs may be available depending on the location of the community. Respite care may be provided by government agencies, home health agencies, hospice programs or friends or other family of the patient. Arrangements may allow the primary caregiver to take a break for a few hours, days or weeks. A social worker, cancer support group or social services department of local government can offer more information about the options available. For more information, visit the National Hospice and Palliative Care Organization (NHPCO) at  www.nhpco.org or contact 1-800-658-8898.

Questions for your doctor about resources

Preparing questions in advance can help patients have more meaningful discussions with their physicians regarding their conditions. Patients may wish to ask their doctor the following questions about cancer resources:

  1. Who will be on my cancer care team?

  2. Will I be given contact information for the members of the team?

  3. Who can provide me with information for support groups for my type of cancer?

  4. Are there agencies I can contact for financial assistance?

  5. If I need legal assistance, do you have any referrals?

  6. Can you provide me with information for home health services?

  7. Is there a dietitian who can help me with nutritional issues?

  8. Can you refer me to an appropriate clinical trial if I am a candidate?

  9. Can you provide me with the names of area hospice facilities?

  10. How will I know if I am ready for hospice?
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