Close

Finding Professional Caregivers

157731476_47You may have psychological needs at some point during your cancer journey.

Ideally, your psychological needs will be assessed before you begin treatment; for example, some patients who develop head and neck cancer consume excessive alcohol, and counseling services may help to develop coping skills that do not involve alcohol consumption.4, American Cancer Society (ACS). Cancer facts and figures 2012. Atlanta, GA: American Cancer Society, Inc. 2012.5 Breitbart W, Holland J. Psychosocial aspects of head and neck cancer. Semin Oncol. 1988 Feb;15(1):61-9.In an assessment of patients newly diagnosed with head and neck cancer before starting cancer treatment, approximately 40 percent of these patients had alcohol dependence or abuse.6 Kugaya A, Akechi T, Okuyama T, et al. Prevalence, predictive factors, and screening for psychologic distress in patients with newly diagnosed head and neck cancer. Cancer. 2000 Jun 15;88(12):2817-23.

Even if you do not need psychosocial support at the start of your cancer treatment, you may need it at a later point. Post-treatment, you may have impaired function (e.g., speaking, eating), or even have permanent long-term changes, such as a change in voice or change in appearance which may cause anxiety or other emotions.5, Breitbart W, Holland J. Psychosocial aspects of head and neck cancer. Semin Oncol. 1988 Feb;15(1):61-9.6 Kugaya A, Akechi T, Okuyama T, et al. Prevalence, predictive factors, and screening for psychologic distress in patients with newly diagnosed head and neck cancer. Cancer. 2000 Jun 15;88(12):2817-23. In addition, some patients experience psychiatric problems during the cancer journey and need additional support; a study evaluating 60 patients with head and neck cancer after completing radiation therapy found that 20 percent had depression.7 Bjordal K, Kaasa S. Psychological distress in head and neck cancer patients 7-11 years after curative treatment. Br J Cancer. 1995 Mar;71(3):592-7.

Therefore, you may want to consider joining a support group. Support groups are typically small, with 10-12 members, and most members will have a similar disease state.8 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. Studies have demonstrated that patients’ quality of life improves if they participate in support groups.9 Ashbury FD, Cameron C, Mercer SL, Fitch M, Nielsen E. One-on-one peer support and quality of life for breast cancer patients. Patient Educ Couns. 1998 Oct;35(2):89-100.

There are other alternatives besides a live support group. Another option you may want to consider is participating in online communities specific to the disease state.8 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. You may become uncomfortable with your appearance, which can be a stressor that leads to isolation from people.3 Gaziano JE. Evaluation and management of oropharyngeal Dysphagia in head and neck cancer. Cancer Control. 2002 Sep-Oct;9(5):400-9. The online communities allow you to participate and receive or give support, yet remain anonymous.8, 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):e12.10 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.

Instead of working with a support group, you may want to consider working with a counselor one on one. Many patients preferred one on one training with a counselor who taught them cognitive behavioral therapy; these patients preferred this activity over group counseling.11 Semple CJ, Dunwoody L, Sullivan K, Kernohan WG. Patients with head and neck cancer prefer individualized cognitive behavioural therapy. Eur J Cancer Care (Engl). 2006 Jul;15(3):220-7.

If you don’t ask, no one can help you. You’ve got to get vocal in asking for what you need. If you don’t speak up, you’re going to feel like you’re not participating in the game. Michele C. (salivary gland cancer survivor)

References

1 Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12.

2 Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.

3 Gaziano JE. Evaluation and management of oropharyngeal Dysphagia in head and neck cancer. Cancer Control. 2002 Sep-Oct;9(5):400-9.

4 American Cancer Society (ACS). Cancer facts and figures 2012. Atlanta, GA: American Cancer Society, Inc. 2012.

5 Breitbart W, Holland J. Psychosocial aspects of head and neck cancer. Semin Oncol. 1988 Feb;15(1):61-9.

6 Kugaya A, Akechi T, Okuyama T, et al. Prevalence, predictive factors, and screening for psychologic distress in patients with newly diagnosed head and neck cancer. Cancer. 2000 Jun 15;88(12):2817-23.

7 Bjordal K, Kaasa S. Psychological distress in head and neck cancer patients 7-11 years after curative treatment. Br J Cancer. 1995 Mar;71(3):592-7.

8 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.

9 Ashbury FD, Cameron C, Mercer SL, Fitch M, Nielsen E. One-on-one peer support and quality of life for breast cancer patients. Patient Educ Couns. 1998 Oct;35(2):89-100.

10 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.

11 Semple CJ, Dunwoody L, Sullivan K, Kernohan WG. Patients with head and neck cancer prefer individualized cognitive behavioural therapy. Eur J Cancer Care (Engl). 2006 Jul;15(3):220-7.