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LIFE WITH HEAD AND NECK CANCER

In 2016, it is estimated 61,760 people will
develop head and neck cancer.
So there are many others who share your journey.

An arrow pointing downward.

Your Head and Neck Cancer Journey

Head and neck cancer accounts for over 3% of all cancers in the United States. While most head and neck cancer occurs in older people, recent statistics show that an increasing number of young people are being diagnosed, mostly with cancers that are either oral (in the mouth) or oropharyngeal (in the back of the tongue, tonsils, soft palate, or walls of the throat).

If you recently found out you have head and neck cancer, you are not alone. And while everyone’s journey is unique, there are certain things you should know to help you make informed decisions that are right for you. This section offers you guidance so you can know what to expect in the journey ahead.

Partnerships that support you

It takes more than medicine alone to confront cancer and its impact on life. That's why Lilly Oncology is committed to forging partnerships with leading cancer organizations and advocacy groups. Together, we're creating powerful tools and resources to help address the personal and emotional needs that go beyond treatment—for those living with cancer, and those who love and care for them.

Diagnosis: What’s going on?

Head and neck cancer is a term used to describe a number of different cancerous tumors that develop in or around the throat, larynx, nose, sinuses, and mouth.

Most cancers of the head and neck begin in the thin, flat cells that make up the lining of the structures of the head, and are called squamous cell carcinomas.

A patient speaks to a doctor.

About the head and neck area

The head and neck area is filled with many specialized glands, tissues, and cells. Here, many important functions occur that are important to our physical and social interactions: hearing, seeing, talking, eating, smiling, and more.

Possible symptoms of head and neck cancer

  • Swelling that doesn’t go away
  • Sores that don’t heal
  • Patch in the mouth that is red or white
  • Lump or bump in the back of the mouth, throat, or neck, with or without pain
  • Sore throat that doesn’t get better
  • Bad breath that’s out of the ordinary
  • Hoarse/changed voice
  • Nose feels blocked or congested
  • Nosebleeds or other nose discharge
  • Hard to breathe
  • Double vision
  • Numb/weak body part in head or neck
  • Painful/difficult to chew, swallow, or move jaw or tongue
  • Pain in ear and/or jaw
  • Blood in saliva or in phlegm you cough up into mouth
  • Teeth loosening
  • Dentures don't fit anymore
  • Losing weight without trying
  • Feeling tired or weak

How head and neck cancer is diagnosed

Different tests and procedures may be used to detect, diagnose, and evaluate head and neck cancer and may include:

Physical exam/blood and urine tests

During a physical examination, the doctor checks for lumps on the neck, lips, gums, and cheeks. The doctor will inspect the nose, mouth, throat, and tongue for abnormalities. Blood and urine tests may be performed.

HPV testing

Evaluation may include testing for HPV (human papillomavirus) infection, which has been linked to a higher risk of some head and neck cancers.

Endoscopy

This test allows the doctor to see inside the body with a thin tube called an endoscope. It might be used to remove samples of cells or tissue.

Biopsy

A biopsy is the removal of a small amount of tissue so it can be analyzed under a microscope for cancer cells.

Molecular testing of the tumor

Your doctor may recommend performing tests on a tumor sample to find specific genes, proteins, and other factors unique to the tumor. Test results will help decide if your treatment options include a type of treatment called targeted therapy.

X-ray/barium swallow

This test can help identify abnormalities along the swallowing passage. A person swallows a liquid containing barium, which coats the lining of the esophagus, stomach, and intestines, so tumors or other abnormalities are easier to see on the x-ray. If there are signs of cancer, the doctor may recommend a computed tomography (CT) scan.

Panorex

This is a panoramic x-ray of the jawbones to detect cancer or evaluate the teeth before radiation therapy or chemotherapy.

Ultrasound

Uses sound waves to take a picture of internal organs.

Computed Tomography (CT) scan

Creates a three-dimensional picture inside the body with an x-ray machine. A computer then combines these images to show any abnormalities or tumors. Can also be used to measure the tumor’s size.

Magnetic Resonance Imaging (MRI)

An MRI uses magnetic fields to produce detailed images of the body, especially images of soft tissue, such as the tonsils and base of the tongue. MRI can also be used to measure the tumor’s size.

Bone scan

A bone scan uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a vein. It collects in areas of the bone and is detected by a special camera. This test may be done to see if cancer has spread to the bones.

Positron Emission Tomography (PET) scan

A way to create pictures of organs and tissues inside the body. Radioactive sugar substance is injected into the patient’s body. Cancer absorbs the radioactive substance. A scanner detects this substance to create images of the inside of the body.

How head and neck cancer is staged

The process used to find out whether cancer has spread is called staging. It is important to know the stage in order to plan treatment. This is a general description of the stages of head and neck cancers.

Staging is a way to classify the size of a tumor and whether the cancer has spread to nearby tissues or other distant parts of the body. The most common staging system is TNM:

  • T describes how deeply the main (primary) tumor (T) has grown into the wall of the bowel and whether it has grown into nearby areas. A T0 cancer is in its earliest stage while T4 cancer has grown through all layers of the wall or grown into nearby areas
  • N tells whether the cancer has spread to the lymph nodes. N0 means there is no cancer in the lymph nodes. N1, N2, and N3 mean it has spread to the lymph nodes. The higher the number, the farther away the cancer has spread from its original site
  • M tells whether the cancer has spread (metastasized) to other parts of the body. M0 means it hasn’t spread far from its original site, while M1 means the cancer has spread to more distant locations

The TNM system is then used to stage the tumor in a range from 0 to IV (4). The higher the number, the greater the size and spread of the tumor. Your doctor will use the stage number to help determine how your cancer should be treated.

If you still have questions about your diagnosis, ask your doctor to clarify.

Distress: This can’t be happening.

As you may have discovered, a diagnosis of cancer may result in many questions, worries, and fears.

All feelings are normal

Learning you have cancer may be a shock, and how you react to this news is very personal. There is no right or wrong way to feel. However, there are many common emotions and reactions that people feel and have when they learn they have cancer. Among them are:

  • Fear/anger/guilt
  • Sadness/depression
  • Loneliness
  • Change in eating or sleeping patterns
  • Poor concentration
  • Difficulty making decisions
  • Irritability
  • Panic attacks
  • Sense of loss of control
  • Irrational thoughts
  • Diminished or absent sexual drive

Acknowledge your feelings

Respect the ever-changing emotions you’re feeling. It’s also important to express your feelings, rather than bottle them up inside. Talking about what you’re experiencing can help you stay strong and feel less overwhelmed.

Talk about your concerns

Sharing your concerns is an important step toward regaining a sense of control and taking a proactive stand. If sharing your concerns is difficult for you, you might find it helpful to write your feelings down or join a support group (in-person or online).

Seek help from the people around you, including:

  • Family
  • Friends
  • Your healthcare team
  • Other cancer survivors
  • Support groups
  • Professionals, such as therapists and religious leaders
If you or someone you love is faced with a diagnosis of head and neck cancer and the challenges it may bring, ask your healthcare team about local resources that may help. You and those who support you may also benefit from the following organizations, which have focused information about head and neck cancer:

Head and Neck Cancer Alliance

1-866-792-HNCA (1-866-792-4622)

www.headandneck.org

The Oral Cancer Foundation®

www.oralcancer.org

Support for People with Oral and Head and Neck Cancer (SPOHNC)

1-800-377-0928

www.spohnc.org

All third-party names, logos, brands, and other trademarks are the property of their respective trademark owners. Those trademark owners are not affiliated with Lilly and they do not sponsor or endorse this material.

Plan: What’s next?

Sharing your diagnosis with family and friends can provide you with the strength and support you need. It also gives those closest to you the opportunity to do what they can to help you. Family and friends may be able to help you with:

  • Daily activities
  • Coping with changing feelings
  • Support through feelings of hope

The role of caregivers

Having a caregiver can help you physically and emotionally while living with cancer. By providing ongoing care, a caregiver can be a strong, positive influence on how you deal with your illness.

Your caregivers can help you in many ways, including:

  • Making meals, housekeeping, and offering child care
  • Arranging schedules and coordinating medical care
  • Going with you to doctor visits and taking notes
  • Managing financial, legal, and insurance issues

During treatment, you may face difficult decisions about your cancer or your therapy. Or you may need to resolve a sensitive issue related to work, finances, or your family. Dealing with this on your own when you have a serious illness can be overwhelming. Your caregiver can help. Talk honestly about what you’re going through, so they can better help you.

Get to know your care team

Talking things over with your healthcare team will help you be more engaged in your care. Being prepared to talk to your doctor may help to put your mind at ease. Continue asking questions until you clearly understand the cancer you are facing and all the options you have to fight it.

Treat: It’s time to act.

While many people who have head and neck cancer may be more than ready to start fighting the cancer, each treatment comes with special considerations that could impact day-to-day life. Because treatment options and side effects vary, you should discuss them with your doctor, including risks and potential benefits. You and your doctor will work together to decide the treatment that is right for you. Keep reading to see some of the more common treatments.

A patient speaks to a nurse.

New normal: Life’s different.

For many people, survivorship (surviving cancer) serves as a strong motivator to make positive lifestyle changes.

Healthy lifestyle

People recovering from head and neck cancer are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, managing stress, and being physically active.

Continued checkups

In addition, it is important to have recommended medical checkups and tests to take care of your health.

Rehabilitation and counseling

The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Express your journey

Share your creative expressions with the long-standing program Lilly Oncology on Canvas.

Keep connected

Make a free, personalized web page—to connect to family, friends, and others who want to support you in your journey—at MyLifeLine.org.

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