Although cancer is often referred to as if it is a single disease, cancer is actually a group of over 100 different diseases affecting various parts of the body. They all have one characteristic in common, however – the uncontrolled growth and spread of abnormal cells that invade and destroy healthy body tissues and organs.
Approximately 9 percent of all amputations are due to malignancy, according to the 1988-1996 Health Care and Utilization Project National Inpatient Sample. Though science gets closer each year to a cure, a diagnosis of cancer still presents new challenges and stresses for many families. Studies have shown that cancer patients who participate in support groups have higher recovery rates. Your physician, hospital social services or library can provide referrals to local support organizations that can help you cope. The important thing to remember is that you are not alone. There are more than 9 million cancer survivors in the United States.
Internet "One-Stop" Sites & Key Information Resources
The road to recovery begins with understanding your diagnosis and what it means to you and your family. To make the most of your options, it is important to stay informed. You can find such information through "one-stop" sites and other key information resources on the Internet.
Many have "live chats" scheduled with physicians and other healthcare professionals. Some have information available in Spanish. Most offer information about the latest advances and treatments for particular kinds of cancer.
Please note, however, that these sites can only respond to general questions relating to site content, technical support issues, and navigation assistance. In most cases, the staff members are information specialists, not medical advisors, and, therefore, they cannot provide treatment recommendations or "second opinions."
Cancer Care, Inc.
Cancer Care is a national nonprofit organization whose mission is to provide free professional help to people with cancer through counseling, education, information and referral, and direct financial assistance. Web site: www.cancercare.org
Cancer Hope Network
Cancer Hope Network provides free, confidential, one-on-one support to people with cancer and their families, matching patients with trained volunteers who have themselves undergone a similar experience. Telephone: 1-877/HOPENET; Web site: www.cancerhopenetwork.org
American Cancer Society (ACS)
The American Cancer Society is a nationwide community-based health organization dedicated to eliminating cancer as a major health problem through research, education, advocacy and service. Telephone: 1-800/ACS-2345; Web site: www.cancer.org/docroot/home/index.asp?level=0
The Wellness Community
The Wellness Community is a national nonprofit organization dedicated to providing emotional support and education for people with cancer and their loved ones. Through participation in professionally led support groups and educational workshops, people affected by cancer can learn to regain control, reduce feelings of isolation and restore hope – regardless of the stage of their disease. Telephone: 1-888/793-WELL; Web site: www.thewellnesscommunity.org
National Cancer Institute
The National Cancer Institute, the federal government's primary agency for cancer research, coordinates the National Cancer Program, which conducts and supports research, training, education, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer. Telephone: 1-800/422-6237; Web site: www.cancer.gov ; Web site (en Espanol): www.nci.nih.gov/espanol
Through OncoLink you can get comprehensive information about specific types of cancer, updates on cancer treatments, and news about research advances. Web site: www.oncolink.com
Children and Cancer
When a child is diagnosed with and treated for cancer, both patient and family enter the complex and often frightening world of modern medicine. Hospitals can be vast and confusing places with mazelike corridors, endless forms to be completed, and terminology that might as well be a foreign language. The familiar schedules and routines of daily family life are suddenly turned upside down. Parents must yield some control of their child and place their trust in members of a cancer care team.
Young People with Cancer: A Handbook for Parents
This book discusses the most common types of childhood cancer, treatments and side-effects, issues that may arise, and practical tips gathered from parents. Web site: www.cancer.gov/cancerinfo/youngpeople
American Cancer Society (ACS)
The "Children and Cancer" page of the ACS Web site addresses all aspects of childhood cancer, including support, finding a pediatric center, and financial and insurance issues. Web site: www.cancer.org/docroot/CRI/CRI_2_6x_Children_and_Cancer.asp?sitearea=
Candlelighters Childhood Cancer Foundation
The Candlelighters Childhood Cancer Foundation is a national nonprofit group whose mission is to educate, support, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them. Telephone: 1-800/366-2223; Web site: www.candlelighters.org
Pediatric Oncology Resource Center
The Pediatric Oncology Resource Center is a one-stop center for parents of children with cancer, by parents of children with cancer. Web site: www.acor.org/ped-onc
Insure Kids Now!
Insure Kids Now! is a national campaign to link the nation's 10 million uninsured children – from birth to age 18 – to free and low-cost health insurance. Telephone: 1-877/KIDS-NOW; Web site: www.insurekidsnow.gov
Asking the Right Questions
Proper management of cancer is complex, involving coordinated care from doctors, nurses, technicians, therapists, dieticians, and social workers. It's in your best interest to be an involved and informed patient. Establish a relationship with your doctor and healthcare team. Here's a sample of questions to ask your healthcare professional.
- Exactly what type of cancer do I have?
- What stage is the cancer in? What does that mean?
- How does my stage affect what I am supposed to do?
- What other healthcare professionals do I need to speak to? How can they help me?
- How was my diagnosis determined?
- What tests were taken and what did they show?
- Are more tests planned?
- What is my prognosis?
Getting Second Opinions
A second opinion can give you confidence in the information and recommendations you have already obtained, or it may offer a different approach to treatment. If the second physician disagrees with the initial consultation, you may even want to seek a third opinion. The important thing is that you receive state-of-the-art diagnostic tests and treatment and that you have confidence in the care you are receiving. You may ask your primary care physician for a referral for a second opinion, or you can ask the oncologist that you have already seen. You should not be uncomfortable asking for this referral. Many physicians welcome the additional input and reassurance provided by a second opinion. It is your right as a patient to obtain this information.
American Hospital Association– The Patient Care Partnership
This brochure provides patients withinformation about their rights andresponsibilities as well as what they shouldexpect during their hospital stay.Web site: www.hospitalconnect.com/aha/resource_center/resource/resource_pbill_of_rights.html
Patient Advocate Foundation
Patient Advocate Foundation is a national nonprofit organization that serves as an active liaison between patients and their insurer, employer and/or creditors to resolve insurance, job retention, and/or debt crisis matters. Telephone: 1-800/532-5274, Web site: www.patientadvocate.org
Traditional/Alternative Treatments for Cancer
There is no "best" method of treating cancer. The most common methods are surgery, radiation and chemotherapy. Complementary/alternative medicine is becoming more integrated into mainstream medicine. In selecting a specific type of treatment, the physician must consider many factors, including the type, stage, and location of the cancer, as well as the patient's health and age. Most treatment methods are associated with side-effects, including hair loss, fatigue, and inability to digest food.
This page of the American Cancer Society Web site addresses traditional and alternative cancer treatments. Web site: www.cancer.org/docroot/ETO/ETO_1.asp
Bone Marrow Transplant
This site evaluates the potential risks and benefits of marrow transplant surgery. Web site: http://cpmcnet.columbia.edu/dept/medicine/bonemarrow/bmtinfo.html
Radiation Treatment for Cancer Patients
This site explains basic facts, side effects, and common concerns about radiotherapy, including its side-effects. Web site: www.thecancer.info/radiation.htm
Chemotherapy for Cancer Management
The Cancer Information Network provides information and useful Internet links about chemotherapy for cancer management. Web site: www.thecancer.info/chemo/index.asp
Complementary and Alternative Therapies
This page of the American Cancer Society Web site addresses alternative modes of cancer treatment and how to evaluate them objectively. Web site: www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO
This Web site provides the latest and most accurate information on state-of-the-art management of cancer pain for patients, caregivers, and healthcare professionals. Web site: www.cancer-pain.org
This Web site is dedicated to being the premier educational and informational resource on the Internet for healthcare professionals and consumers who have an interest in pain and its management. Telephone: 1-800/328-2308; Web site: www.pain.com/frameindex.cfm
Maintaining a Healthful Lifestyle
Good nutrition is always important, but even more so when you are dealing with cancer. A healthful diet will help you maintain your strength and weight, resist infection, and rebuild tissues that cancer treatment may harm. Weight loss, weight gain, and changes in taste perception or digestion are common concerns for cancer patients. Fluctuations in weight are a particular concern in terms of maintaining a prosthetic fit.
Nutrition in Cancer Care
This Web site provides an excellent overview of how nutrition and cancer treatment affect each other. Web site: www.cancer.gov/cancerinfo/pdq/supportivecare/nutrition/patient
Mayo Clinic – Food and Nutrition Center
This Web site provides dietary strategies, recipes, and guidelines for weight management. Web site: www.mayoclinic.com/findinforma-tion/conditioncenters/centers.cfm?objectid=000851DA-6222-1B37-8D7E80C8D77A0000
Johns Hopkins – Cancer and Nutrition
This Web site provides detailed dietary guidelines in response to treatment side-effects.Web site: www.jhbmc.jhu.edu/NUTRI/cancerhealth.html
Cancer treatment requires careful financial planning, whether you have health insurance or not. People who had health and life insurance before treatment are usually able to keep it, although costs and benefits may change. Talk to your insurance provider to determine the extent of your coverage. Also check your disability insurance to see if you are eligible to maintain your income while you are unable to work. The financial burdens of cancer are much more difficult for someone with no health insurance, but a lack of insurance should not mean a lack of competent medical care and treatment.
There may be other sources of financial assistance available, such as discount drug programs, clinical trials, lodging, or free emergency medical transportation.
CancerCare – Financial Needs
CancerCare can provide guidance about financial assistance resources. Cancer-Care also provides limited grants for certain kinds of cancers and for people in some locations. Web site: www.cancercare.org/FinancialNeeds/FinancialNeedsmain.cfm
Pharmaceutical Research and Manufacturers of America
PhRMA administers HelpingPatients. org, a comprehensive, one-stop link to thousands of medicines offered through patient assistance programs. Web site: www.phrma.org
This Web site contains the latest information on patient assistance programs. Web site: www.needymeds.com
This Web site explains the basics of how clinical trials work, how to find the ones appropriate for you, and related issues. Telephone: 1-800/4-CANCER; Web site: www.cancer.gov/clinicaltrials
National Clinical Trials
This Web site maintains a list of all current National Cancer Institute-supported clinical trials in the United States. Web site: www.dana-farber.org/can/clinical
National Association of Hospital Hospitality Houses
The National Association of Hospital Hospitality Houses is a nonprofit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies. Web site: www.nahhh.org
For more information about cancer and amputation, contact the Amputee Coalition's National Limb Loss Information Center toll-free at 1-888/267-5669