Patient's Guide to the Cancer Experience - Cancer Diagnosis and Treatment

Patient's Guide to the Cancer Experience

At Chemocare.com, we realize how difficult it can be when you or someone you love has been diagnosed with cancer and will begin cancer treatment. You are not alone.

"I am a survivor."

From the moment you are diagnosed with cancer, you are a cancer survivor.  There is no distinction between survivors who actively are undergoing treatment and survivors who are in remission. The definition is simple: If you are living with cancer, you are a survivor.

Survivors often credit their cancers with giving them a new perspective. Cancer forced them to focus on those things that are truly important in their lives.

It's important to remember that you didn't choose cancer. However, you do have choices about how to handle it.

We Can Help

At Chemocare.com, we are dedicated to helping you face the challenges associated with your diagnosis and cancer treatment.

• We will empower you to ask questions that better prepare you to make good health care decisions.
• We will guide you to a variety of resources that may help you deal with your diagnosis and treatments.

Staying Strong, Physically and Emotionally

Fighting cancer-or any other threatening illness-takes strength. Some cancer chemotherapy and other treatments may cause side effects that leave you feeling overwhelmed, tired and without much of an appetite.

Numerous medical and non-medical strategies are available to help you cope.

• Eating well during cancer treatment can be challenging. Consult with a registered dietitian who specializes in nutrition for cancer patients, and make him or her part of your treatment team.
• Keep active. Although you may not have as much energy as you did before you became ill and began your cancer treatments, you should make an effort to exercise, even if you only flex and extend your muscles while sitting or lying down. Exercise has been shown to offer many benefits including decreasing fatigue, decreasing stress and anxiety, decreasing the incidence of blood clots and increasing appetite. In general, people who remain active better tolerate their treatments and any related side effects.
• Although feelings of anger, denial, fear and sadness are normal, sharing your feelings can make you feel better. Oncology social workers, clergy and other members of your treatment team can help you sort through your feelings. They also can guide you to resources specially designed to support cancer patients and their families.

Choosing Medical Care for Cancer Treatment

When faced with a serious illness, choosing a doctor or hospital is an important decision. Consider the following quality factors when evaluating your choices for specialized cancer care:

• hospital's integrated approach to cancer care
• physician and hospital experience and credentials
• hospital's range of services

Don't be afraid to ask questions. When comparing cancer centers and their respective treatments, ask about these quality factors. The answers to all of these questions can help you make an informed decision about your health care.

Cancer Treatment - The First Step

A good first step is to ask your family doctor for a referral to a multidisciplinary cancer center that uses a team approach to cancer treatment. Get the names of several doctors and hospitals that have the most experience in treating your cancer and that offer the newest, most effective treatments, including experimental therapies.

You should not be afraid to seek a second opinion. A good doctor will not be offended if you want to discuss your diagnosis and cancer treatment options with another physician. Although some insurance companies require a referral from your primary care physician, in many cases you may seek a second opinion on your own.

Before you begin to call around for information, do the following:

• Try to remember or write down what you have been told about your illness, even if you don't understand all the details. The more information you can provide about your specific situation, the better the advice or information you will receive about chemo and other cancer treatment options. 
• Know your insurance. Find out if your insurance covers treatment at the hospital of your choice. If you call your insurance company, ask if you need a referral from your primary care doctor and find out if your plan covers a second opinion. Finally, avoid characterizing your care as "experimental therapy" or a "clinical trial."
• Consider how far you can or will travel for treatment. Cancer treatments usually are prolonged. Some cancer centers will help individuals locate temporary housing, although this generally is an additional expense. If you are considering cancer centers far from home, consider those that are located near a relative or friend who may be willing to let you move in temporarily. Some major cancer centers are associated with free or low-cost housing for cancer outpatients.

Cancer Care Approach

To make sure that a hospital offers a multidisciplinary approach, you may wish to ask the following questions:

• Will my case be discussed by a team of physicians and health care providers?
• How often does the team discuss cancer patients?
• Who are the members of the team?
• Who will be planning my cancer treatment?
• Who will be managing my care?

If you receive satisfactory answers from more than one hospital, ask the following questions to make comparisons between different institutions.

Physician and Hospital Experience

In general, patients experience better results from doctors and hospitals that have more experience in providing specialized medical and surgical care for their types of cancer.

Make sure that the physician managing your care is primarily in clinical practice-seeing patients-and not spending most of his or her time in the research laboratory. To find out, ask how much of his or her time is spent in patient care and how much time is spent in research.

Physician and Hospital Credentials

Credentials have been set by nationally recognized medical professional organizations to verify that doctors and hospitals meet certain standards in health care delivery.

Physicians. Board certification, or the international equivalent, is a sign that doctors are highly trained in their fields. For physicians who practice in specialties without national boards-such as breast cancer surgery-additional training and certification in a broader field-such as general surgery-are usually good measures of their qualifications.

Hospitals. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) is the nationwide authority that surveys hospitals. To be accredited by JCAHO, a hospital must meet certain criteria for staffing, equipment and facility safety requirements. Accreditation is voluntary; however, if the hospital that you are considering is not accredited, it is important to know why.

Information about a hospital's reputation is widely available through the mass media, listings, the government, consumer groups, books and magazines such as U.S. News & World Report, which annually rates America's best hospitals.

Range of Services

Hospitals with a broad range of cancer treatment services can treat more complex medical conditions and better handle complications that may occur.

Specialty departments. Cancer and its treatments have physical, psychological and emotional effects. Cancer may affect multiple body organs and systems, and some cancer treatments can produce a variety of side effects. Therefore, immediate access to a full range of specialty departments within a cancer care facility is critical.

Diagnostic and treatment options. Choosing a facility that can diagnose and treat your cancer in a variety of ways allows you to get the most effective, appropriate and cost-effective treatment available.

The diagnosis and treatment of cancer should involve health care professionals from many disciplines working as a team. Depending on the specifics of your illness, the team may include oncologists, surgeons, radiation oncologists, radiologists, pathologists and specialists who can manage possible treatment side effects.

Questions to Ask Your Physician

When you see your doctor and discuss your cancer treatment, it is a good idea to have a list of prepared questions. Many patients say that they have so much on their minds that they find it difficult to focus. You may find it helpful to bring a friend or family member with you to take notes because often a particular question may be answered during the course of conversation. Also, it is good to have a second "set of ears" to validate the information.

Questions you may wish to ask your physician include:

• What is my diagnosis?
• Has the cancer spread? What stage is my cancer?
• What are my treatment options?
• What are your recommendations? Why?
• What do you expect the outcome of cancer treatment to be?
• What are the risks and benefits of treatment?
• Are there side effects to chemotherapy and other cancer treatments, and, if so, how will they be managed?
• Would a clinical trial be a possibility?
• What is the cancer treatment schedule? How often? How long will treatment last?
• Are there any restrictions on my activities?
• Who should I call if I have a medical problem? What is the telephone number?
• Is there a "world expert" or place that may specialize in my illness?
• What resources are available to help me deal with my illness?
• Are there support groups available to help me?

You may find that you need to ask some of these questions again at different times during the course of treatment.

Empowering Yourself

Many of the factors that determine cancer outcomes are beyond your control.  These include the type of cancer, the stage of the cancer, your general health and your age. However, you can increase your chances for a positive outcome by taking an active role in your health care and by selecting a cancer center based on the information in this guide.

The Internet has become a huge resource for information gathering. While there is great potential to educate individuals about medical care, there also is potential to cause harm through wrong, misleading and deceptive information, particularly with respect to cancer.

Benefits. Many reputable cancer-related health organizations, such as the American Cancer Society (ACS) and the National Cancer Institute (NCI), have Web sites. From reputable sites, you can access information on:

• cancer-related topics (e.g., new technology, experimental trials, screening programs and support groups);
• cancer center services and physician qualifications;
• treatments or specialized services, particularly if a cancer center has the ability to communicate online; and
• online cancer support groups, links to other Web sites, hints for coping with the disease, as well as support group "pen pals."

Risks. Unfortunately, there is no quality control for information or advice found on the Internet. Many sources, both good and bad, look alike on a computer screen. Users are left to try to sort through the information alone and determine fact from fiction.

Tips for gathering cancer and cancer treatment information on the Internet

• Look for sites that are affiliated with known organizations or medical institutions.
• Use extreme caution when reviewing information about chemo and other cancer treatments. Look for facts, not opinions. 
• If it sounds too good to be true, it probably is.
• Review the information with a health professional. 
• Always let your doctor know if you are thinking of trying other therapies. Some can interfere with your medical treatment or be harmful to you.

Support Groups. Support groups offer patients, families and friends an opportunity to share information about their cancer experiences and have their concerns, fears and hopes reaffirmed by others who are experiencing similar challenges.

Look Good, Feel Better. Sponsored by the American Cancer Society and the Cosmetology Association, the program provides makeovers and tips for making oneself look and feel better while going through cancer treatment. Reservations are necessary.

Pearls of Wisdom

You may hear that "attitude is everything." Accept that you won't always feel positive; you will have bad days, and that's all right.

Let others help. It can be therapeutic for them and you.

Learn as much as you can about your cancer and its potential treatment. Knowledge will give you a better sense of control over your disease.

Do things just for you: read the comic strip section in the newspaper; indulge in a long, luxurious bath; learn some relaxation techniques.

If the idea of a support group doesn't appeal to you, consider keeping a journal. Writing down your experience can be therapeutic and healing.

There's no such thing as a stupid question. Your medical team members are trained to answer your questions; they won't know that you don't understand something unless you ask.

Make plans for the future. Whether it's planning a weekend getaway or planting a garden, plans give you hope and something positive to anticipate.

You're not alone.

Note:  We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.