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The Impact of Diagnosis

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If you have recently received a diagnosis of head and neck cancer, you are most likely struggling with strong emotions. Many patients report feeling a mixture of shock and disbelief at first. This is the most common reaction and normally lasts for several days or weeks.1 Depression (PDQ): Health professional version. National Cancer Institute – PDQ Cancer Information Summaries. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032529/. This period is followed by any number of emotions, which might include denial, anger, grief, fear, depression, guilt, hope, determination and acceptance. Everyone reacts differently to a cancer diagnosis. There is no right or wrong reaction.

For example, one person might immediately seek out all the information he or she can find, while another person might feel too overwhelmed to deal with knowing all the details of his or her cancer diagnosis and upcoming treatment right away. One patient might want to be surrounded by family and friends to help him or her handle the fear and uncertainty of what is to come, while another patient may want to keep his or her diagnosis private and have some time and space to process what is happening. One person might immediately swing into “battle mode” and declare himself or herself ready for the fight of his or her life, while another person might go through a period of denial in which he or she pretends that nothing has changed and life will continue as usual.

A positive aspect of diagnosis is that many people report feeling some relief to finally know what is wrong with them. Having a diagnosis and a treatment plan can make you feel more in control.

Regardless of how you react to your diagnosis, you may find it helpful to turn to your family and friends for support. You may also wish to find a social worker or licensed therapist experienced in working with cancer patients for regular counseling beginning soon after your diagnosis and throughout your cancer journey. And of course, having a supportive cancer care team will help you through the process as well.

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Waiting for a diagnosis

Patients waiting for a possible cancer diagnosis experience high levels of distress and anxiety.2 Brocken P, Prins JB, Dekhuijzen PN, van der Heijden HF. The faster the better?—A systematic review on distress in the diagnostic phase of suspected cancer, and the influence of rapid diagnostic pathways. Psycho-Oncology. 2012 Jan;21(1):1-10. This is particularly true when waiting for the results of a first biopsy, but the distress can return with every scan, test and biopsy after that. Almost all cancer patients must deal with this diagnosis-related anxiety at many points during their cancer journey. It’s a particularly intense kind of fear that often cannot be soothed while you wait for results.

To cope with the anxiety of waiting for your initial diagnosis, a refinement of your diagnosis, or information about whether or not the cancer has spread or recurred, cancer patients suggest a variety of strategies. Try distracting yourself as much as possible by staying busy with work, hobbies or entertainment you enjoy. A therapist or counselor will likely have strategies for reducing your anxiety. You might also attend religious services to pray or go to a cancer support group to talk through your fears with others. Above all, communicate with your cancer care team regularly. Ask them any questions you have. Getting a few answers about what to expect might help lessen your fears or help you feel more prepared. Uncertainty and fear of the unknown are the main drivers of diagnosis anxiety.2 Brocken P, Prins JB, Dekhuijzen PN, van der Heijden HF. The faster the better?—A systematic review on distress in the diagnostic phase of suspected cancer, and the influence of rapid diagnostic pathways. Psycho-Oncology. 2012 Jan;21(1):1-10.

Dealing with feelings of guilt or shame

Approximately 85 percent of head and neck cancer cases are associated with tobacco use.3 Smoking in cancer care (PDQ): Health professional version. National Cancer Institute – PDQ Cancer Information Summaries. http://www.cancer.gov/cancertopics/pdq/supportivecare/smokingcessation/HealthProfessional/page2. The risk of developing head and neck cancer increases if you use tobacco and drink alcohol heavily.4 Hashibe M, Brennan P, Chuang SC, et al. Interaction between tobacco and alcohol use and the risk of head and neck cancer: pooled analysis in the International Head and Neck Cancer Because of this, some people diagnosed with head and neck cancer feel guilty or ashamed. If you have been a heavy smoker and/or drinker, you might blame yourself or feel you are being punished for past poor choices or personal weakness. Such self-blame is not helpful, though. Those who dwell on feelings of guilt during their cancer treatments have a lower quality of life than those who do not.5Epidemiology Consortium. Cancer Epidemiol Biomarkers Prev. 2009 Feb;18(2):541-50. Psychologists conclude that dealing with negative self-perception before treatment improves cancer patients’ ability to cope with treatment and recovery.5Epidemiology Consortium. Cancer Epidemiol Biomarkers Prev. 2009 Feb;18(2):541-50. To overcome negative emotions, remind yourself that it doesn’t matter anymore what you may or may not have done differently before your cancer diagnosis. You have cancer now, and you must focus on your treatment and recovery. Plus, part of your recovery is stopping smoking and drinking in order to reduce the chances of your cancer coming back in the future. That is a positive step you can take beginning right now.

If you do not use tobacco and do not drink alcohol excessively, you may resent being grouped with those who do. If you get angry when people assume you smoked or drank and therefore caused your cancer, you may feel ashamed or guilty about getting angry at people who simply do not understand your situation. Additionally, even if you have no idea what caused your cancer, you may feel guilt or shame anyway because you believe on some level that you should have done something differently to prevent it.

Regardless of whether you did something that increased your risk for head and neck cancer or lowered your chances for survival, you may fear that others will not have sympathy for you or might refuse to support you because they believe you brought your cancer on yourself. While you may certainly meet people who have such attitudes, the truth is that social stigma against those with head and neck cancer is far lower than most people believe. A great majority of head and neck cancer patients—80 percent, in fact—feel social acceptance and support.6 Scharloo M, Baatenburg de Jong RJ, Langeveld TP, van Velzen-Verkaik E, Doorn-op den Akker MM, Kaptein AA. Quality of life and illness perceptions in patients with recently diagnosed head and neck cancer. Head Neck. 2005 Oct;27(10):857-863.

You may also feel guilty or be angry at yourself for ignoring your symptoms or for failing to see a specialist quickly enough. Perhaps you feel guilt or shame for not handling your emotions as well as you think you should, for shutting loved ones out or for needing treatment for psychological issues such as depression or anxiety. Again, feeling guilty or ashamed will not help you beat your cancer or recover more quickly.

Just focus on today and on the days and weeks to come. Do what you need to do now to change your habits and give yourself the best chance possible to survive and recover. Try not to dwell on past mistakes or self-recrimination; instead, be proud of your victories moving forward.

Handling a human papilloma virus (HPV)-related diagnosis

Another risk factor for some head and neck cancers is infection with human papillomavirus (HPV). HPV is a sexually transmitted infection that is usually associated with genital contact, but it can also spread to the lips, mouth, throat and tongue through oral sex. Because of the stigma associated with sexually transmitted infections, some people whose head and neck cancer is related to HPV struggle with added feelings of guilt, shame and embarrassment.7 Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology. 2011 Sep 19.

You should not feel ashamed if you have HPV and did not know it. In many cases, people with HPV never develop any symptoms or health problems. There are more than 40 types of HPV, and it is the most common sexually transmitted infection. As many as 50 percent of sexually active women and men get it at some point in their lives.8 Daley EM, Perrin KM, McDermott RJ, Vamos CA, Rayko HL, Packing-Ebuen JL, Webb C, McFarlane M. The psychosocial burden of HPV: a mixed-method study of knowledge, attitudes and behaviors among HPV+ women. J Health Psychol. 2010 Mar;15(2):279-290. Most cases of HPV actually go away on their own within two years. The cases of HPV that pose a risk for developing head and neck cancer are those that remain for many years after the initial infection, many times without noticeable symptoms. However, some strands of HPV cause genital warts or precancerous changes in the infected skin, which can in turn lead to cancer if they go undetected. It usually takes years for cancer to develop in this way.8 Daley EM, Perrin KM, McDermott RJ, Vamos CA, Rayko HL, Packing-Ebuen JL, Webb C, McFarlane M. The psychosocial burden of HPV: a mixed-method study of knowledge, attitudes and behaviors among HPV+ women. J Health Psychol. 2010 Mar;15(2):279-290.

Patients who have just been diagnosed with head and neck cancer are naturally far more concerned with their cancer diagnoses than discovering that they have HPV.9 Genital HPV infection: fact sheet. Centers for Disease Control and Prevention. http://www.cdc.gov/std/HPV/STDFact-HPV.htm#cause. 2012 Aug. They do worry about their partners’ risk, though, and usually want more information about HPV for themselves and for those with whom they’ve been intimate.10 Genital warts. A.D.A.M. Medical Encyclopedia. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001889/. If you have HPV, you should inform any sexual partners who may have been exposed to it so they can get themselves checked and treated. Note, however, that there is no HPV test for men, and the only HPV test for women is used to screen for cervical cancer. HPV is most often diagnosed through the presence of genital warts and other symptoms. Consult with your doctor to learn more about your particular situation and how it might affect your sexual partner(s).11 Baxi SS, Shuman AG, Corner GW, Shuk E, Sherman EJ, Elkin EB, Hay JL, Pfister DG. Sharing a diagnosis of HPV-related head and neck cancer: The emotions, the confusion, and what patients want to know. Head Neck. 2012 Nov 20.

The impact of your cancer diagnosis on others

Your head and neck cancer diagnosis will affect others in your life, particularly your spouse or partner and your children if you have any. Invite your caregiver(s) to visit the Impact of Diagnosis page in the Caregiver’s Emotional Journey section. You and your spouse may also wish to read the Dealing with Diagnosis page in the section about Helping Children Understand Cancer and Treatment.

Accept people’s concern, support, sympathy and advice if that’s what helps you to process your diagnosis. You might even feel confident enough to offer your strength and reassurance to others who are afraid for you. On the other hand, don’t be afraid to tell the people in your life, even those closest to you, when you need time and space to deal with the emotions of your diagnosis on your own.

The minute you hear the word malignancy, everything changes. Debra R. (mucoepidermoid carcinoma of the palate survivor)

References

1 Depression (PDQ): Health professional version. National Cancer Institute – PDQ Cancer Information Summaries. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032529/.

2 Brocken P, Prins JB, Dekhuijzen PN, van der Heijden HF. The faster the better?—A systematic review on distress in the diagnostic phase of suspected cancer, and the influence of rapid diagnostic pathways. Psycho-Oncology. 2012 Jan;21(1):1-10.

3 Smoking in cancer care (PDQ): Health professional version. National Cancer Institute – PDQ Cancer Information Summaries. http://www.cancer.gov/cancertopics/pdq/supportivecare/smokingcessation/HealthProfessional/page2.

4 Hashibe M, Brennan P, Chuang SC, et al. Interaction between tobacco and alcohol use and the risk of head and neck cancer: pooled analysis in the International Head and Neck Cancer

5 Epidemiology Consortium. Cancer Epidemiol Biomarkers Prev. 2009 Feb;18(2):541-50.

6 Scharloo M, Baatenburg de Jong RJ, Langeveld TP, van Velzen-Verkaik E, Doorn-op den Akker MM, Kaptein AA. Quality of life and illness perceptions in patients with recently diagnosed head and neck cancer. Head Neck. 2005 Oct;27(10):857-863.

7 Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology. 2011 Sep 19.

8 Daley EM, Perrin KM, McDermott RJ, Vamos CA, Rayko HL, Packing-Ebuen JL, Webb C, McFarlane M. The psychosocial burden of HPV: a mixed-method study of knowledge, attitudes and behaviors among HPV+ women. J Health Psychol. 2010 Mar;15(2):279-290.

9 Genital HPV infection: fact sheet. Centers for Disease Control and Prevention. http://www.cdc.gov/std/HPV/STDFact-HPV.htm#cause. 2012 Aug.

10 Genital warts. A.D.A.M. Medical Encyclopedia. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001889/.

11 Baxi SS, Shuman AG, Corner GW, Shuk E, Sherman EJ, Elkin EB, Hay JL, Pfister DG. Sharing a diagnosis of HPV-related head and neck cancer: The emotions, the confusion, and what patients want to know. Head Neck. 2012 Nov 20.

12 HPV and men: fact sheet. Centers for Disease Control and Prevention. http://www.cdc.gov/std/hpv/stdfact-hpv-and-men.htm. 2011 Dec.