Head & Neck

Survivorship

The term “survivor” means different things to different people, but it commonly refers to anyone who has lived with, through or beyond cancer. If you’ve completed active treatment and are disease-free or are living with cancer, you realize the meaning may vary at different times.

Survivors are often surprised to learn that cancer-related issues frequently aren’t resolved with the end of treatment. Recovering from cancer – physically, emotionally and mentally – can take a great deal of patience and more time than many survivors and their families expect. Treatment-related side effects, such as fatigue, chronic pain and cognitive dysfunction (chemo brain), can last for weeks, months or even years. You may also experience emotional changes that can range from relief and gratitude to fear and anxiety. Many options are available to alleviate and manage these issues, so it’s essential to stay in frequent contact with your health care team post treatment.

Many cancer advocacy organizations recommend a survivorship care plan for all cancer survivors, whether you are disease-free or living with chronic or metastatic cancer. Ideally, your survivorship care plan starts at the time of your diagnosis and is given to you by your doctor. The plan should include your medical history; a list of health care team members with contact information; your diagnosis, which includes the date, cancer type, subtype, tumor site(s), stage or classification; test results; molecular biomarkers; second or third opinions; and a treatment summary that includes dates. If you do not receive one, create your own by requesting copies of all of your tests, biopsies, surgeries, pathology and consultation notes. You need to know the type of cancer you have; the stage; each treatment you have received, including type of surgery, days of radiation therapy, and types of medicines (oral and IV); and your follow-up tests and appointments.

As you focus on your future, it’s important to make smart lifestyle decisions. Eating right and exercising continue to offer multiple health benefits and help you build a solid foundation for going forward with life. It may be helpful to consider nutrition and exercise as treatments your body needs to continue to be well. For the most part, you’re in control of the choices you make about nutrition and exercise, and smart choices will help you live the healthiest life possible. If you have eating challenges, consider working with a dietitian who can offer suggestions to work around any restrictions you may have.

Depending on the location of the cancer and the type of treatment, you may need rehabilitation. It may include surgery, physical therapy, nutritional counseling, speech therapy and learning how to care for a stoma (see Living With a Stoma). You may need reconstructive and plastic surgery to rebuild bones or tissues (see Reconstructive Surgery).

Reconstructive surgery may not always be possible because of tissue damage from the original surgery or from radiation therapy. In that case, a prosthodontist may be able to make a prosthesis (an artificial dental and/or facial part) to restore satisfactory swallowing, speech and appearance. If a prosthesis is necessary, you will receive special training on how to use it.

Late effects may occur months or years after diagnosis. Your survivorship plan should include information about your risk for developing late effects based on your specific diagnosis and treatment plan. Ask your doctor about symptoms to watch for so you can begin to manage them before they become serious. Cancer centers are advised to provide educational seminars for patients and survivors. Request information from your navigator about these events. Commonly, there are seminars annually or semi-annually specifically for head and neck cancer survivors.

 

Know the Risks to Help Prevent a Second Cancer

Once you have been diagnosed with a head and neck cancer, you have an increased risk for developing a second cancer. The risk varies depending on the site of the primary cancer and whether you drink alcohol or use tobacco-related products, such as cigarettes, chewing tobacco and electronic cigarettes. You are encouraged to quit smoking and avoid alcohol. Other risk factors to be aware of include the following.

  • Human papillomavirus (HPV) is associated with throat cancers. HPV vaccines are now available to help prevent HPV-related cancer and other conditions
  • Poor dental hygiene
  • Prolonged exposure to the sun, which is linked to cancer of the lip

Follow-up Care Will be Essential

Before you return to your primary care physician, ask your oncologist to set up a long-term follow-up care plan to regularly monitor you for signs of a recurrence or a second cancer, manage late effects or long-term side effects and assess your emotional well-being. These appointments will help keep the lines of communication open with your doctor as you transition into former activities and explore new ones.

Follow-up care plan should include this information.

  • An appointment schedule for ongoing monitoring. Checkups may include exams of the stoma (if you have one). Regular dental exams may also be necessary. Your doctor may monitor thyroid and pituitary gland function, especially if you had radiation therapy.
  • Maintenance or pain management medications or therapies, including type, dosage, frequency and duration.
  • Referral(s) for cancer rehabilitation services, such as physical or occupational therapy, speech therapy, or others.
  • Information about your risk of a recurrence; a second cancer, long-term treatment-related side effects and late effects.
  • Recommended screening guidelines for other types of cancer and chronic health problems.
  • Recommendations for survivorship care. If the follow-up care plan you received does not include survivorship care, ask your doctor, nurse navigator or caseworker to help you. Download a sample Survivorship Care Plan
  • Your follow-care plan isn’t a document to be filed away and forgotten. It is a master plan of action designed to help you stay as healthy as possible after active cancer treatment ends, or during maintenance treatment. It is very important to schedule and keep all follow-up appointments and screenings recommended in your plan. Being an active partner in your own health care is empowering and helps you move forward as you transition from cancer patient to cancer survivor.

Additional Resources

 

 

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