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Dealing with Recurrence

Recurrence means that cancer returns after it has been treated and eliminated. Head and neck cancer recurrence almost always creates an emotional crisis for patients and their caregivers.1Adjustment to cancer: anxiety and distress. National Cancer Institute – PDQ Cancer Information Summaries, Health Professional Version. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032514/ Some say that recurrence is harder to deal with emotionally than the initial cancer diagnosis. This time, you know what’s coming, and your chances may be lower than they were before.

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Fear of recurrence

Fear of recurrence is nearly universal. Up to 80 percent of head and neck cancer patients report feeling significant fear of recurrence after their treatment is completed.2Humphris GM, Rogers S, McNally D, Lee-Jones C, Brown J, Vaughan D. Fear of recurrence and possible cases of anxiety and depression in orofacial cancer patients. Int J Oral Maxillofac Surg. 2003 Oct;32(5):486-491. Some people’s fear of recurrence becomes an anxiety disorder or leads to panic attacks or even post-traumatic stress disorder (PTSD). An elevated fear of recurrence is persistent and very distressing. Those most likely to experience an elevated fear of recurrence are younger cancer survivors, those who fixate on symptoms and people with low optimism, family problems and small social networks.3Crist JV, Grunfeld EA. Factors reported to influence fear of recurrence in cancer patients: a systematic review. Psycho-Oncology. 2012 Jun 3. doi: 10.1002/pon.3114.

“Scanxiety”

There is a particularly intense fear and anxiety that cancer survivors can experience each time they undergo a routine scan or test to screen for recurrence. Fellow patients and survivors call this persistent and almost uncontrollable fear is “scanxiety.”4Feiler B. Scanxiety. Fear of a postcancer ritual. Time. 2011 Jun 13;177(24):56. The longer it takes to get test results, the worse the scanxiety is likely to get. You may feel that you just cannot bear to wait to hear your results or dread the results so much that you don’t ever want to know what they are. You may have trouble sleeping, lose your appetite, be unable to concentrate or even feel like you’re having trouble breathing while you wait. You may come to hate your post-treatment scans because their results will determine whether you will be free to live your life for another few weeks, months or years or will be starting all over again with cancer treatments.

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Remember that the scans do not make your cancer return, and avoiding follow-up screenings will not keep cancer away. Scans and tests are simply the means by which you can learn if the cancer is back, and you do need to know. Just like your initial diagnosis, the earlier you catch cancer recurrence, the better your chances are for survival and recovery.5Israel O, Kuten A. Early detection of cancer recurrence: 18F-FDG PET/CT can make a difference in diagnosis and patient care. J Nucl Med. 2007 Jan;48 Suppl 1:28S-35S. Think of your follow-up screening appointments as early warning systems that will help you continue to survive. You will likely still experience anxiety waiting for your appointments and test results, but try to think of these screenings as a positive checkpoint.

Dealing with a diagnosis of cancer recurrence

If you are diagnosed with cancer recurrence, try some of these strategies to help you cope.

  • Using the Same Coping Mechanisms as Your First Cancer Experience
    Think back to your first cancer experience—the same strategies that helped you cope then are likely to help now, whether this is reaching out to your support network or using relaxation techniques.
  • Your Knowledge About Cancer
    The knowledge you’ve gained from your first cancer treatment experience can help reduce your anxiety. You know what to expect this time around and can feel optimistic that if you made it through once, you can do it again.
  • Renewed or Continuing Therapy, Counseling or Support Groups
    If counseling, therapy or support groups helped you during your first round of cancer treatments, continue or resume these meetings to help you cope with emotions that may be even more intense and overwhelming now. If you did not use professional help the first time but find yourself feeling more overwhelmed this time, consider seeking psychological care and assistance to help you cope with your cancer recurrence and treatment.

It’s important to use your prior cancer experiences to your advantage, as they can help you feel more in control when making decisions about your new treatment plans.

When the cancer recurred, it wasn’t as bad as the first time since I knew what to expect.Tony L. (oral cancer survivor)

References

1 Adjustment to cancer: anxiety and distress. National Cancer Institute – PDQ Cancer Information Summaries, Health Professional Version. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032514/

2 Humphris GM, Rogers S, McNally D, Lee-Jones C, Brown J, Vaughan D. Fear of recurrence and possible cases of anxiety and depression in orofacial cancer patients. Int J Oral Maxillofac Surg. 2003 Oct;32(5):486-491.

3 Crist JV, Grunfeld EA. Factors reported to influence fear of recurrence in cancer patients: a systematic review. Psycho-Oncology. 2012 Jun 3. doi: 10.1002/pon.3114.

4 Feiler B. Scanxiety. Fear of a postcancer ritual. Time. 2011 Jun 13;177(24):56.

5 Israel O, Kuten A. Early detection of cancer recurrence: 18F-FDG PET/CT can make a difference in diagnosis and patient care. J Nucl Med. 2007 Jan;48 Suppl 1:28S-35S.