When Fear of Recurrence Becomes Overwhelming

When Fear of Recurrence Becomes Overwhelming

Anne Katz, PhD, RN, FAAN

@DrAnneKatz
Aug 03, 2017

JP* is a 65-year-old patient of mine who opted for a radical prostatectomy when he was diagnosed with low-risk, low-volume prostate cancer 5 years ago. He was extremely distressed after learning of the diagnosis and made repeated phone calls and multiple visits in the weeks before his surgery. Recognizing him as a “high-needs” patient, I tried my best to meet his needs for reassurance, support, and education. His surgery went smoothly and was complication free. I visited him in the hospital 3 days after his surgery and he was pain free and mostly embarrassed that his hair was messy. He took 6 weeks off work to recover fully and was soon back to his usual activities including brisk walks every day. He had seen the pelvic floor physiotherapist before his surgery and had some initial incontinence for a few days after the catheter came out but regained full bladder control within the week and has remained fully continent. He is able to achieve erections with oral medications and his PSA has remained undetectable.

Sounds like the perfect scenario, right? It was almost perfect, but given his pre-operative need for attention I anticipated that his longer term post-operative course might not be so perfect. And I was right. His follow-up care has been anything but smooth. For the first 2 years he was seen every 3 months; each of these visits to the urologist required a pre-visit PSA test. Each and every time this precipitated a period of extreme anxiety for him. We ask patients to have their PSA test done 2 weeks before their clinic visit. It doesn’t take that long to get the results, of course, but humans often procrastinate, delay, or forget to do it and so that 2-week window allows for some wriggle room for the man to have it done. For this patient, however, the 2-week window was 2 weeks of hell.

I talked to him often at these times. My initial questions about finding strategies to manage his anxiety were rejected. He was taking pills to sleep and using anxiolytics when his anxiety became overwhelming. Exercise was not helping and he was not interested in mind-body interventions or counseling. He had tried cognitive behavior therapy years before to manage his anxiety and found it ineffective. I suggested that he have his blood test done 2 days before his appointment, assuring him that we would have the result in time. I talked to the urologist about this and his suggestion was to see him less often. His PSA was undetectable after the first year and so he was moved to a 6-month follow-up schedule. This helped somewhat, however, I still received multiple calls in the 2 days between his blood being drawn and his visit to the clinic. And in those 2 days his anxiety was out of control. There was nothing I could do to help. Explanations and statistics about the likelihood of recurrence this far out from treatment were not helpful. He could cite examples of friends and family members whose cancer recurred and/or who died many years after “successful” treatment. I tried my best, but for this man, my best was not good enough—and perhaps nothing would be.

The fear of recurrence affects up to 87% of cancer survivors and is defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress.1 The authors suggest that there are five possible characteristics of this phenomenon: 1) high levels of worry, rumination, preoccupation, and the presence of intrusive thoughts; 2) coping that is not adaptive; 3) impairment of usual functioning; 4) high levels of distress; and 5) experiencing difficulties planning for the future. Multiple studies have shown evidence of efficacy of cognitive behavior therapy, including one recently published in the Journal of Clinical Oncology2 and another presented at the 2017 ASCO Annual Meeting.3 Both the interventions described are time- and resource-intensive and require the survivor to want to address their anxiety and fear.

And my patient did not seem to want to—or more likely, his overwhelming anxiety prevented him from actively pursuing a remedy, even a partial one. And so I decided that if he couldn’t manage his anxiety I was going to do everything I could to mitigate or even reduce it just a little bit. He is now seen in follow-up once a year. He insists that his follow-up care remains at our clinic, even 5 years later, for the following reason. He calls me the day before he is planning to go to the lab to have his blood drawn. He texts me when he gets there, usually 20 minutes before they open, and then again once it is over. I then check his medical record every 15 minutes until the result is posted; this usually takes about an hour or so. And then I call him immediately to give him his result that, thankfully, has been good for 5 years and counting.

Some would suggest that I am aiding and abetting a maladaptive coping style and that I am not helping him at all. Others might suggest that I am treating him differently than other patients and creating unrealistic expectations for the kind of care our clinic provides. Still others may say that I am overstepping boundaries and breaking the rules. They may be right—or perhaps I am trying to provide the kind of care that this one individual needs and wants. It happens just once a year and I am willing to pay him this kind of attention because he needs it. And I would do it for others if they needed it because, for me, this is patient-centered care.

*Name and identifying details changed for privacy.

References

  1. Lebel S, Ozakinci G, Humphris G, et al. From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Support Care Cancer. 2016;24:3265-8. doi:10.1007/s00520-016-3272-5.
  2. van de Wal M, Thewes B, Gielissen M, et al. Efficacy of blended cognitive behavior therapy for high fear of recurrence in breast, prostate, and colorectal cancer survivors: the SWORD study, a randomized controlled trial. J Clin Oncol. 2017;35:2173-3. doi:10.1200/JCO.2016.70.5301.
  3. Beith JM, Thewes B, Turner J, et al. Long-term results of a phase II randomized controlled trial (RCT) of a psychological intervention (Conquer Fear) to reduce clinical levels of fear of cancer recurrence in breast, colorectal, and melanoma cancer survivors. J Clin Oncol. 2017;35 (suppl; abstr LBA10000).

Disclaimer: 

The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.
Back to Top