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There is no typical way to feel when you are told that you have cancer. Everyone feels and responds differently. Some people experience several emotions at once, ranging from fear, sadness, or even anger, to motivation and determination. There is, however, one feeling that seems consistent for many people who are diagnosed with cancer--and that is a loss of control. One way to regain a sense of control in your life is by learning as much as you can about your disease so that you can discuss it openly with your health care team.

Becoming a self-advocate is one way to approach your diagnosis and treatment. Being self-supportive requires that you understand what is best for you. You may want to consider spending some time evaluating your needs to determine how you would like to approach your treatment.

 

One way to become acquainted with your needs is through self-assessment. Your experience with cancer is a very personal journey, and it is helpful to try to understand your feelings. Keeping a journal can provide a way for you to document this period in your life, record questions and thoughts, and express concerns about your cancer treatment. Getting acquainted with your needs is a good first step in approaching your cancer therapy.

Knowing when to ask for help is another important aspect of being a self-advocate. As the primary supporter of your cause, it is up to you to determine when (and whom) to ask for help. Often, an individual's first request for help is when they are scheduled to visit the doctor. You may request that a friend or family member go with you to your first few appointments to help take notes, clarify information, or simply be there as a source of support. Your care partner does not have to be the same person all of the time, but it should be someone who can help you gather and understand the large amount of information you will receive.

Consider allowing yourself to depend on others for awhile. By building a network of support, your ability to take control of your life will actually be enhanced. Sometimes, learning to ask for help is just as important as receiving it. Accept that people really do want to help you and that by accepting their help, you may both benefit. Keep a list of things that you need help with so that when someone asks you how he or she can help, you can let him or her know. This list can include such things as shopping, cooking, laundry, childcare, or transportation. You may wish to keep a calendar and have your family, friends, or members of your community (church members, members of your support group, neighbors) sign up to provide dinner, transportation for you to your appointments or for your children and their activities, or childcare for an hour in the afternoon so that you can take a nap. Save your energy for yourself, your family, and friends. Acknowledging that you need assistance and identifying the specific tasks that need to be accomplished make it easier for others to help you.

You may want to consider sharing your diagnosis with others. Many people feel comfortable telling family and close friends about their diagnosis of cancer, but choosing to share this information and the people you want to share it with is a personal decision. You may want to consider talking with your employer or anyone else who may be directly affected by your disease or your treatment. You may find that an even stronger support system will be available to you once you begin to communicate with others.

You may also consider talking to other cancer patients who have received treatment. Support groups meet regularly and can provide valuable information for cancer patients, their families, and significant others. At the end of this discussion, you will find a list of groups that may be a good starting point in your search for information. Some of these groups meet in person, others communicate over the telephone, and all of these groups will send you information through the mail. Please remember that it is important to choose your sources of information and support wisely and to discuss the information you collect with your health care team. Gathering information about your cancer and its treatment will reduce uncertainty and assist you in understanding your situation.

Finding the best available health care is crucial. Your primary care doctor will have an ongoing role in your cancer treatment and may refer you to an oncologist, a specialist in cancer care. Your oncologist should be someone who listens carefully to your needs and concerns, relates to you with consideration and respect, and will work with you to select the cancer treatment that is right for you. Many people choose to seek a second opinion. If you feel that this is an option you would like to pursue, ask your primary care doctor or oncologist for help in referring you to another specialist. Taking a few days to meet with more than one doctor is always appropriate and is a positive step toward taking control of your cancer therapy. Physicians understand that this is necessary for many newly diagnosed patients and should be supportive of your need to explore this option. After meeting with and talking to different physicians, you should feel free to move forward with the health care provider who best fits your needs and will work with you to meet your goals. Remember, building a comfortable relationship with your health care team is an important part of your cancer care.

 

Your health care team may also include an oncology nurse. This is the person who will administer your chemotherapy treatments, help you understand your disease, and assist you in managing the symptoms of your disease or its treatment. Other members of your health care team may include a dietitian to help you with your nutritional needs, a social worker to help you with emotional support, financial needs, and identifying other resources, or an oncology pharmacist   to help explain how you may be affected by the drugs used in your treatment. They are interested in your care and will be able to answer your questions in a way that makes sense to you. You need to make sure that you communicate your needs as clearly as you can to everyone on your health care team so they can help you make the best decisions.

Some questions to ask when choosing a health care team

 

1. Am I comfortable with my health care team? Do they make me feel like I am a central part of the decision-making process?
    
2. Does the doctor communicate to me in terms that I can understand?
    
3. Am I comfortable with the information that is provided to me?
    
4. Do I feel comfortable asking questions? Does the doctor listen to my concerns?
    
5. Are the office surroundings comfortable?
    
6. Do I have to wait long after my appointment time to see the doctor?
    
7. Besides the doctor, what other specialists are available to me? A dietitian, social worker, nurse, or pharmacist?
    
8. When and how can I contact my health care team?

There is a wealth of information available to you. Please look at the list of resources at the end of this discussion for information ranging from general information about your disease to clinical trials to survivor issues. In addition to the resources listed at the end of this discussion, you will find that information is readily available from such places as libraries, bookstores, your doctor's office, the Internet, community centers, and pharmaceutical companies. These materials can be found in various forms, such as pamphlets, booklets, Internet web sites, books, audiotapes, and videotapes. You should select the formats that you are most comfortable learning from. It is important to work with your health care team to make decisions that are best for your particular situation, and there is no need to rush those decisions. Most important decisions do not have to be made in one day. Take some time to think about your options. You may find that you need a little extra time to make your decisions. Be patient with yourself.

 

Seek information in quantities that you can manage. We all feel overwhelmed when presented with too much information at one time. As you review information and think of questions, write them down and take them to your next appointment. You may want to make a special appointment with your doctor just to devote time for this. Before your appointment, discuss these questions with your care partner and give them a copy so he or she can help to ensure that you get the answers you need. Refer to the section below on Tips for communicating effectively to help you with this.

Tips for communicating effectively

 

1. Prepare for your appointment. Write down questions when you think of them and take them with you to discuss with your health care team.
    
2. Be as clear as you can when asking questions or communicating your needs.
    
3. If you bring books, articles, or information you have printed from the Internet to your appointment, highlight important information that you would like to discuss.
    
4. Listen carefully to what you are being told. Take notes or make an audiotape of your conversation.
    
5. Do not be afraid to ask for clarification if you do not understand some of the information that you receive. Ask questions until you are satisfied that you understand the information being provided to you.

One of the first decisions you may want to make is whether to participate in a clinical trial. It is important to make this decision prior to starting any treatment because you may not qualify for certain clinical trials if you have already received treatment for your cancer. If your doctor does not bring up this subject with you, you may want to ask him/her if participating in a clinical trial is an option for you. If you take part in a clinical trial, you will receive treatment in your doctor's office, a clinic, or a hospital. As part of the study, your health care team will carefully monitor your progress. Some clinical trials may ask you to fill out questionnaires in order to gather information about the way you feel while you are on treatment. It is important that you fill out these questionnaires if it is requested. These questionnaires provide valuable information to cancer researchers about how your cancer treatment is affecting your condition as well as your daily life.

 

Clinical trials are carried out following a plan of very strict scientific guidelines, called a protocol. The protocol explains everything that will happen in the study. It must be approved by review boards composed of health care professionals and other qualified individuals before the study can enroll patients. Following preclinical or laboratory phases of studies, there are 4 possible phases of cancer clinical trials in humans, each addressing different questions about the treatment being studied.

Preclinical studies, which are conducted in a laboratory setting, help to assess whether an experimental drug is safe to test in humans. During this stage, the drug is usually studied in animals to answer questions about how a drug works, how it is eliminated, and how the drug might affect pregnancy and offspring.

In phase I clinical trials, doctors are studying the safety of giving drugs to humans along with looking for the best way to give a medication (for example, as a pill, an injection, or an infusion). They will usually study how the drug is eliminated from the body in humans. In addition, doctors are looking to determine appropriate doses for further testing. They carefully watch for any side effects. Phase I study drugs are usually given to small groups of humans. During this phase, for drugs used to treat cancer, investigators may be able to identify in which tumors a treatment works best.

In phase II clinical trials, the drug is studied in a larger group. The focus is to study specific cancers to see how well the drug or treatment works. The investigator will watch closely for side effects and will also watch how the disease responds to the treatment.

In phase III clinical trials, a study drug or treatment is generally compared to a standard existing treatment. Patients are usually randomly assigned to receive either the standard treatment or the new treatment. During the trial, patients are not told which treatment they are receiving but are told what to expect and what to watch for. Also, sometimes the doctor will not be aware of which treatment each patient is receiving so that he or she can remain objective about how the disease is responding to the treatment and any side effects that patients may be experiencing.

Phase IV clinical trials study a drug that has already been approved by the Food and Drug Administration (FDA). Pharmaceutical companies often sponsor these trials to study expanded uses of drugs already available.

Before patients enter a clinical trial, all of the procedures that are to be done in the trial will be explained, and patients will be asked to sign an informed consent. By signing the document, patients are acknowledging that they understand the potential risks and benefits of the treatment they are to receive or of any tests that may be required. It is important to remember that patients may change their minds and withdraw from a clinical trial at any time. Non-English-speaking patients may ask for consent documents in their own language.

Some patients have said that they chose not to participate in a clinical trial because they thought that their health insurance would not cover the cost of their treatment. There are a number of new laws and programs, which vary from state to state, that may help pay for all or part of the costs of treatment. It is important to have all of your questions answered by your insurance representative, your health care team, or one of the groups listed in the resource list at the end of this discussion before agreeing to participate in a clinical trial. To obtain additional information about clinical trials, contact the organizations listed below.

Additional information about clinical trials

As a resource to our visitors, Lilly is providing links to the websites listed below. These websites are independent from Eli Lilly and Company. Because we do not control the content of the websites we may link to, and due to their constantly changing nature, we cannot be responsible for the content, accuracy, practices or standards of these non-Lilly sites. Lilly does not endorse the content of any third-party websites.

 

• NCI-PDQ (National Cancer Institute-Physician Database Query) at http://cancernet.nci.nih.gov or 1-800-4-CANCER (1-800-422-6237) (TTY: 1-800-332-8615)
   
• Centerwatch at http://www.centerwatch.com
   
• National Institutes of Health at http://www.clinicaltrials.gov
   
• Association of Cancer Online Resources at http://www.acor.org
   
• Pharmaceutical company websites

Your decision to take part in a clinical trial is up to you, your family, and your health care team. There are potential risks and benefits associated with clinical trials that you will want to discuss with your doctor before deciding to participate in a clinical trial. A list of questions to guide your discussions with your doctor about clinical trials appears below. If you choose not to participate in or do not qualify for a clinical trial, treatment options are still available for you, which are discussed in the next section, Understanding your treatment options.

Some questions to ask your health care team about clinical trials

 

1. Do you participate in clinical trials?
    
2. Do I qualify (meet the eligibility criteria) for any current clinical trials?
    
3. If I do qualify for a clinical trial, what is known about the effectiveness of the treatment being studied? What are the side effects? What is the purpose of the study?
    
4. How long does the clinical trial last? Can I stop participating in the clinical trial at any time I choose?
    
5. What costs am I responsible for if I participate in a study?
    
6. If I do not qualify for any current clinical trials, what are my options?
    
7. Will my privacy be protected?

Determining which particular treatment is right for you depends on several factors, including your general physical health, the type of cancer you have and at what stage it was diagnosed, and the goal of therapy that you and your doctor have agreed upon. Goal of therapy refers to what you and your doctor expect from your treatment. If your goal of therapy is to treat your cancer as aggressively as possible, your treatment may be different from that of someone whose disease is more advanced or severe or who cannot tolerate certain side effects of therapy. Some people may determine that their goal of therapy is to be as comfortable as possible or to maintain their normal activities of daily living for as long as possible. Choosing a treatment with few side effects or choosing not to receive treatment may also be an option for you to discuss with your doctor.

Treatment options could include surgery, chemotherapy, biotherapy, radiation therapy, and hormonal therapy, or a combination of any of these, depending on the type and stage of cancer that you have. With some tumors, surgical removal of all or as much tumor as possible is considered the best treatment depending on the size and location of the tumor and whether the cancer cells have spread to other parts of your body, referred to as metastasis. If there is evidence that tumor cells have spread or if some of the tumor could not be removed during surgery, then one or more of the other available therapies may be used.

You should ask your doctor to talk with you about at least 2 treatment options. These options may be a combination chemotherapy regimen, chemotherapy with other kinds of therapy, or some combination of the above therapies. After your doctor has provided this information, ask about the potential benefits and risks associated with each therapy. Be sure to ask your doctor questions about how each therapy relates to your goal of therapy. Ask your doctor to write down the information he or she shares with you about how effective a therapy is and what the side effects are--regardless of which is most important to you. Take time to compare this information to your goal of therapy, and then discuss it with your doctor.

The following work sheet may be a useful tool to help you and your doctor decide which treatment is best for you, based on a comparison of benefits, risks, side effects, and treatment schedules for the alternatives suggested.

Information about symptom management can be very lengthy and is specific to every individual. A symptom is something that you experience that is different from what is normal for you. It may be the result of the disease or may be due to the treatment. Some examples of common symptoms that you may experience include pain, nausea, vomiting, diarrhea, fatigue, rash, hair loss, numbness or tingling in the extremities, mouth sores, or changes in taste. Be sure that you inform your health care team of any symptoms that you may be experiencing. Your health care team are experts in providing information and individualized ways to manage your symptoms so that you can resume your usual daily activities.

Alternative and complementary therapies
Alternative and complementary therapies have many different definitions. A general definition of an alternative or complementary therapy is a treatment used for the control of cancer in place of or in addition to conventional medical therapy. One type of complementary therapy is supplementation of your diet with herbs or vitamins. Other alternative and/or complementary therapies involve using mental or physical techniques that may reduce stress, enhance your health, or stimulate the release of hormones that may be helpful in boosting your immune system. Some techniques include meditation, listening to motivational tapes, imagery, massage, acupuncture, yoga, and Tai Chi, among many others. Information on alternative or complementary therapies can be found in the media, in books, and on the Internet. Because of the large volume of information available on alternative and complementary therapies, this information is not discussed in detail here. Although some patients feel uncomfortable discussing these therapies with their doctor, your doctor should be willing to discuss alternative or complementary therapy options with you.

It is important that you let your health care team know if you are currently participating in any alternative or complementary therapies. These may have an unwanted effect on you or may alter the effectiveness of the cancer treatment that you are receiving. By being aware of these additional therapies, your health care team can better monitor your progress.

 

You have prepared yourself, made informed decisions, and actively participated in your treatment. As your treatment nears its end, you may experience many feelings, just as you did when you were informed of your cancer diagnosis. You are not alone. There are nearly 8.9 million cancer survivors in the United States. As your last treatment is completed, you may expect that things will suddenly return to normal and you may go back to your life as you knew it before you were diagnosed with cancer. You may discover, as many cancer survivors do, that you need to establish a "new normal."

Of course you would like your daily routine to return to the way it was before your illness, but you may find that you are more likely to have a new set of expectations and priorities as a result of your cancer, its treatment, and redefining your life after diagnosis. Consider the following tips from the American Cancer Society.

 

• Be kind to yourself. Focus on what you can do.
   
• Reach out to others. Reaching out to someone else can reduce stress.
   
• Don't be afraid to say no. Polite but firm refusals help you stay in control of your life.
   
• Talk about your concerns.
   
• Learn to pace yourself. Stop before you get tired.
   
• Give in sometimes. Not every argument is worth winning.
   
• Get enough exercise. It's a great way to get rid of tension in a positive way.
   
• Take time for activities you enjoy.
   
• Set priorities. You can't do everything at once.
• Take one thing at a time. If you're feeling overwhelmed, divide your list into manageable pieces.
   
• Having a plan can reduce the stress of the problem.
   
• Eat properly.
   
• Get enough sleep.

Survivorship issues
As a cancer survivor, you may be introduced to a whole new set of concerns such as fear of cancer recurrence, body image changes, issues related to sexuality and spirituality, and insurance, financial, and work-related concerns. Some cancer survivors report feeling guilty that they made it through their cancer treatment while others they have met in their journey have not.

What people commonly fear most is the unknown. Share your fears with your health care team, your family, and your friends. Knowledge is powerful. Once you have identified your fears, accurate information can help to reduce them.

A major concern for cancer survivors is that their cancer will return. As your cancer treatment comes to an end and the time for your checkup approaches, or as the anniversary date of your cancer diagnosis nears, you may feel anxious. Be sure to ask your doctor what symptoms you should watch for and immediately report anything unusual. Whether you are still being monitored by your oncologist or have been referred back to your family doctor, follow their advice and continue to get regular checkups.

Your physical appearance may have changed as a result of your cancer or its treatment. Although these physical changes may be hard to accept at times, it is important for you to try to accept these changes as part of your "new normal". You may want to consider seeking the assistance of a therapist, another cancer survivor, or a loved one to help you adapt to these changes. In some cases, your health care team may be able to tell you about things that can be done to help your particular situation.

If you experience sexual difficulties as a result of your cancer treatment, discuss this with your health care team. You do not have to give up intimacy and affection during cancer therapy. Communication with your significant other is extremely important during this time. Providing each other with love, support, and comfort is important at this time in your life.

Many people find comfort in spiritual inspiration. Some turn to prayer or to a house of worship, while others turn to nature or the arts (such as painting, writing, or music) or meditative exercise (such as yoga). The form of expression you use is very personal and unique, and whatever form of expression you choose, you may find an inner strength to help you through this difficult time.

Nearly 80% of people diagnosed with cancer return to work. If this is a possibility for you, consider communicating your wants and needs with your employer or others who are directly affected by this change in your life. Maintaining honest, open communication can be healing. Many resources are available to help you through this time, including those listed in the Education and support section.

Hospice
Despite the many advances in cancer diagnosis and treatment in the last decade, some people will not survive their cancer diagnosis. If it appears that despite treatment, your cancer has advanced or you have chosen comfort care over treatment, you may be eligible for hospice care. Hospice focuses on providing physical, emotional, and spiritual support to patients and families of patients who are near the end of life. The goal of hospice is to help you live and to help make the end of life as comfortable as possible. Hospice can help your family care for you at home if that is what you and your family decide upon. Hospice offers respite care so that your caregivers can have occasional time off. Both inpatient and outpatient services may be available on a 24-hour basis. Hospice care is usually a team approach with doctors, nurses, pharmacists, social workers, home health care aides, and the clergy involved.

Find your focus. Build a network. Embrace the future.
You may have read all of the topics in this discussion, or you may have chosen to focus only on the parts that were important to you. Your journey may not be a continuous progression and you may have to make several decisions at once, or you may have to re-evaluate and adjust your decisions. The network of support that you have developed may have long-lasting effects. The people you have met along the way, friendships you may have developed, and connections with your family and friends are all a part of your future. Embrace the future.

As a resource to our visitors, Lilly is providing links to the websites listed below. These websites are independent from Eli Lilly and Company. Because we do not control the content of the websites we may link to, and due to their constantly changing nature, we cannot be responsible for the content, accuracy, practices or standards of these non-Lilly sites. Lilly does not endorse the content of any third-party websites. Please note that many of these sites listed discuss cancer types for which Gemzar is not an FDA-approved treatment.

 

 

• Alliance for Lung Cancer Advocacy, Support, and Education
  1.800.298.2436 or www.alcase.org

• American Cancer Society
  1.800.ACS.2345 (1.800.227.2345) or www.cancer.org

• Cancer Care
  1.800.813.HOPE (1.800.813.4673) or www.cancercare.org

• Cancer Research Foundation of America
  1.800.227.CRFA (1.800.227.2732) or www.preventcancer.org

• Colon Cancer Alliance
  1.877.422.2030 or www.ccalliance.org

• Cure for Lymphoma Foundation
  1.800.CFL.6848 (1.800.235.6848) or www.cfl.org

• The Leukemia and Lymphoma Society
  1.800.955.4572 or www.leukemia-lymphoma.org

• National Alliance of Breast Cancer Organizations
  1.888.806.2226 or www.nabco.org

• National Breast Cancer Coalition
  1.800.622.2838 or www.stopbreastcancer.org

• National Brain Tumor Foundation
  1.800.934.CURE (1.800.934.2873) or www.braintumor.org

• National Cancer Institute*
  1.800.4CANCER (1.800.422.6237) or www.nci.nih.gov

• National Coalition for Cancer Survivorship
  1.877.NCCS.YES (1.877.622.7937) or www.cansearch.org

• National Colorectal Cancer Research Alliance
  1.800.872.3000 or www.nccra.org

• Ovarian Cancer National Alliance
  202.331.1332 or www.ovariancancer.org

• Pancreatic Cancer Action Network
  1.877.2PANCAN (1.877.272.6226) or www.pancan.org

• Patient Advocate Foundation
  1.800.532.5274 or www.patientadvocate.org

• Susan G. Komen Breast Cancer Foundation
  1.800.I'M AWARE (1.800.462.9273) or www.breastcancerinfo.com

• The Wellness Community--National Headquarters
  1.888.793.WELL (1.888.793.9355) or www.wellness-community.org

• US TOO! International, Inc.
  1.800.808.7866 or www.ustoo.com

• Y-Me National Breast Cancer Organization
  1.800.221.2141 or www.y-me.org

*These sites are government-sponsored resources

Biotherapy: Treatment to stimulate or restore the ability of the immune system to fight infection and disease. Also used to lessen side effects that may be caused by some cancer treatments. Also known as immunotherapy, biological therapy, or biological response modifier (BRM) therapy.

Cancer survivor: Anyone who has been diagnosed with cancer, from diagnosis to end of life, is considered a cancer survivor.

Chemotherapy: Treatment with medication, sometimes given orally, but more commonly by injection, into a vein or muscle to destroy cancer cells. Usually, it is a systemic treatment that reaches every organ of the body through the bloodstream.

Clinical trial: Research study that seeks to answer scientific questions and to find better ways to prevent or treat cancer.

Combination therapy: The use of more than one therapy to treat cancer.

Dietitian: A specialist trained to recommend specific diets or additions to your diet.

Goal of therapy: The result that you and your doctor seek to achieve from your treatment.

Hormonal therapy: Treatment or prevention of cancer by removing, blocking, or adding hormones that affect the growth of a tumor.

Informed consent: The process in which a person learns key facts about a clinical trial and voluntarily agrees to take part in it by signing a consent form describing the potential risks and benefits of treatment.

Infusion: Slow and/or prolonged delivery of a drug or fluids through a vein or artery.

Metastasis: The spread of cancer from one part of the body to another.

Oncologist: A doctor who specializes in treating cancer.

Oncology nurse: A nurse with special training in caring for cancer patients and administering cancer treatments.

Oncology pharmacist: A pharmacist who specializes in preparing and dispensing cancer drugs and who can provide information about how a drug works and its side effects.

Protocol: An action plan for a clinical trial. The plan states what will be done in the study and why. It outlines how many people will take part in the study, what types of patients may take part, what tests they will receive and how often, and the treatment plan.

Radiation therapy: A treatment method that uses high-energy x-rays to destroy cancer cells.

Self-advocate: Working on behalf of oneself to take an active role in one's own cancer care treatment.

Side effects: Signs or symptoms that can occur with treatment. Common side effects of cancer treatments may include fatigue, nausea, vomiting, diarrhea, decreased blood cell counts, hair loss, numbness or tingling in the extremities, rash, and mouth sores.

Social worker: A professional who works with patients to help them with emotional, financial, insurance, and other resources that they may need during the course of their cancer care.

Stage: A term used to describe the extent of a cancer and whether it has spread from the original site to other parts of the body.

Surgical intervention: An operation to remove a tumor or to decrease the symptoms caused by the tumor.

Symptom: Something that you experience that is different from what is normal for you and may be the result of the disease or its treatment.

Tumor: An abnormal growth of tissue. Tumors may be either benign (not cancerous) or malignant (cancerous).