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Understanding the Cancer Journey

4968559If a health care professional has recently told an adult in your life that he or she has head and neck cancer, but you do not yet know all the details of the diagnosis, there are steps you can take to prepare.

You may be able to help the person with cancer think about the kinds of doctors and other health care professionals he or she might need to see during the cancer journey. You can also look into other cancer care resources available in your community and online to help your loved one get the best support available.

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The cancer care team

Likely, the person in your life who has cancer went to the doctor because he or she felt a lump or bump in the mouth, throat or neck. Or perhaps he or she was having unusual symptoms, such as losing weight without trying, having a hoarse voice or experiencing difficulty swallowing. The cancer journey includes more than just the primary care doctor, though; it takes an entire team to treat head and neck cancers, starting with the first evaluation.

The first person your loved one talked to was likely a primary care physician, a family doctor, who started the treatment process. The primary care doctor can make referrals to specialists and help your loved one make important decisions such as choosing treatment options and services after treatment is finished.1 The Role of Primary Care Physicians in Cancer Care Klabunde CN, Ambs A, Keating NL, He Y, Doucette WR, Tisnado D, Clauser S, Kahn KL. J Gen Intern Med.2009 September;24(9):1029-1036.Published online 2009 July 14.

Some of the other health care professionals your loved one will be seeing include:

  • Registered nutritionist: A registered nutritionist will likely assess your loved one in the beginning to provide a starting point and then periodically throughout his or her journey. The nutritionist will suggest how to deal with treatment side effects and getting enough calories to keep strength up.
  • Speech pathologist: A speaking specialist should do an assessment of the patient’s ability to speak and swallow.The speech pathologist will recommend strategies and exercises to be done during treatment and after to maintain or improve swallowing and speaking. Unfortunately, 34 to 70 percent of head and neck patients will develop speech impairment during the course of treatment.2 Chen H-C, Evans KFK, Salgado CJ, Mardini S. Methods of voice reconstruction. Seminars in Plastic Surgery. 2010:227-232.
  • Pathologist: A pathologist is a doctor who uses a microscope to evaluate cells and tissue; he or she will play a role in diagnosing the disease.
  • Radiologist: A radiologist is a doctor who specializes in evaluating images from scans such as X-rays, CT scans and MRIs. The radiologist helps to discover the extensiveness of the cancer; he or she will play a role in diagnosing the disease.
  • Radiation oncologist: A radiation oncologist uses radiation therapy to treat or manage cancer.
  • Surgeon: A physician who will physically cut the tumor out and/or reconstruct body parts impacted by the removal of the tumor.
  • Prosthodontist/dentist: Radiation can cause cavities, so your loved one will likely see a dentist before treatment.A prosthodontist may also be seen since teeth, parts of the jaw or other structures such as the nose or the ear may need to be removed to treat the cancer. A prosthodontist specializes in creating a prosthesis, or a synthetic replacement for a body part, to help restore functions possibly affected by surgery.
  • Medical oncologist: An oncologist specializes in several areas of cancer care, such as diagnosis and management of cancer (like chemotherapy).The medical oncologist is likely to be a specialist your loved one will interact with most often during the cancer journey.
  • A support group: You can ask the doctor to recommend a support group for your loved one. A support group can also be helpful to you and other close friends and family. A support group is an important part of the treatment team because those diagnosed often suffer from depression; approximately one in five patients have depression after completing radiation therapy for head and neck cancer,and one in three patients have depression many years after the completion of treatment.3, Katz MR, Kopek N, Waldron J, Devins GM, Tomlinson G. Screening for depression in head and neck cancer. Psycho-Oncology. 2004 Apr;13(4):269-80.4 Terrell JE, Fisher SG, Wolf GT. Long-term quality of life after treatment of laryngeal cancer. The Veterans Affairs Laryngeal Cancer Study Group. Arch Otolaryngol Head Neck Surg. 1998 Sep;124(9):964-71. Both you and the person in your life with cancer may also benefit from skills such as learning how to navigate the cancer journey or how to communicate with health care professionals, from people who have done the same before.5, Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. BMJ. 2004 Mar 6;328(7439):564.6 Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res. 2007 May 14;9(2):e12.

Additional health care professionals may work with the cancer care team, and the patient may need to travel to get some kinds of specialized care, depending on treatment needs. For example, a psychiatrist or addiction specialist may be part of the team. Do not be afraid, though, if more health care professionals are called in; everyone involved in the care of your loved one is there to help, and the more help, the more support you and your loved one will have as you go through this journey together.

Cancer journey resources

There are support groups for the family members and friends of people with cancer. Members of a support group can often provide strategies for navigating the cancer journey or recommendations about how to communicate your needs.5, Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. BMJ. 2004 Mar 6;328(7439):564.6 Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res. 2007 May 14;9(2):e12.

Organizations that can help you find support groups and/or provide counseling services are CancerCare and the American Cancer Society.

Although it may be early in the disease course, you may also want to consider finding out if there are National Cancer Institute (NCI)-designated centers near you. You can enter your location and find nearby facilities.

NCI-designated centers treat cancer with teams of specialists that often have access to clinical trials (new drugs or procedures), which may be useful if your loved one has advanced head and neck cancer.

 

Hearing the word cancer is a scary thing. It puts your life at a standstill.Tony L. (oral cancer survivor)

References

1 The Role of Primary Care Physicians in Cancer Care Klabunde CN, Ambs A, Keating NL, He Y, Doucette WR, Tisnado D, Clauser S, Kahn KL. J Gen Intern Med.2009 September;24(9):1029-1036.Published online 2009 July 14.

2 Chen H-C, Evans KFK, Salgado CJ, Mardini S. Methods of voice reconstruction. Seminars in Plastic Surgery. 2010:227-232.

3 Katz MR, Kopek N, Waldron J, Devins GM, Tomlinson G. Screening for depression in head and neck cancer. Psycho-Oncology. 2004 Apr;13(4):269-80.

4 Terrell JE, Fisher SG, Wolf GT. Long-term quality of life after treatment of laryngeal cancer. The Veterans Affairs Laryngeal Cancer Study Group. Arch Otolaryngol Head Neck Surg. 1998 Sep;124(9):964-71.

5 Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. BMJ. 2004 Mar 6;328(7439):564.

6 Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res. 2007 May 14;9(2):e12.