I seldom dwell on the fact that I am a cancer survivor. Now in my 16th year of survivorship I feel that I have grown comfortable with the fact that this type of cancer is essentially incurable, that it still has the capacity to metastasize, and the routine of follow-up CT scans and Dr. visits every three months have long ago become the norm. I jokingly tell people that I regard my quarterly trip to a state-of-the-art cancer center as little more than a trip to the local Walmart. I am as familiar with images of my scans and the areas that we need to pay special attention to as I am the location of Wallyworld’s bread, milk and eggs. When we decided to surgically remove some enlarged lymph nodes in my neck in November of 2012, the event was taken in stride. We have been monitoring and treating lymph node activity in various ways for almost a dozen years. After the surgery it came as no surprise that cancer had been present in some of the lymph nodes that we had removed; we had expected that. My surgeon had been able to remove more lymph nodes and tissue than we had originally thought possible; the pathology report simply indicated the presence of cancer in three of the 15 lymph nodes. As my oncologist and I discussed the report, the lack of a comment on whether or not cancer cells were found in the tissue surrounding the lymph nodes became an important issue. We decided to have my case reviewed at the next meeting of the tumor board for a fuller explanation of the pathology results. If we had spread of cells outside the lymph nodes to surrounding tissue we would probably undergo radiation therapy. The trip home and the days that followed seemed to me to be completely uneventful. And yet when my oncologist called and said that everything had been contained and that we would continue a course of watchful waiting I felt a tremendous relief.
I was very astonished by the amount of relief that I felt; while I had looked at the entire event as routine, including the discussion of radiotherapy treatments, somewhere beneath the radar a part of me was distressed about the situation. I was struggling with the issue without consciously realizing it.
The “experts” currently say that distress among cancer patients is not uncommon; they estimate that some 30% of patients suffer from this unpleasant emotional experience.
As an untrained and therefore unqualified person, I have a hunch that those estimates are very conservative. Cancer patients as well as their caregivers and family members are faced with many complex and multifaceted challenges that continue long past the diagnosis; the emotional roller coaster of survivorship is an ever present reality. I sometimes think about many of those who have passed their obligatory five-year “ritual” of being “cancer-free” who, reaching that milestone are no longer being “followed” and are attempting to “forget.” Just how successful are they in that effort? How many are gripped with distress or fear when they have an unusual pain or sensation? How often do they awake in the middle of the night with a question in their mind if they are still Okay?
The conversation that Joyce and I had with Dr. Mary Ann Burg on January 3, 2013 sheds some light on the darkness of distress that often accompanies those affected by cancer. Between now and 2015 the Commission on Cancer of the American College of Surgeons has mandated the implementation of psychosocial distress screening for every cancer patient treated in facilities that bear the ACS/CoC accreditation after that date. For now there are very few standards in effect that specify when or how the distress screening is to be done as well as a host of other items. Still, this is a potentially important first step in identifying and perhaps assisting those struggling with distress.
Dr. Burg and her associates in the field of Oncology Social Work recognize the fact that current patients are reluctant to report distress to their medical teams; and that many physicians and treatment facilities never inquire about psychological concerns. Cancer patients who are in distress typically make extra visits to the physician’s office or emergency rooms; often becoming dissatisfied with their medical care and physicians. Many of these patients have trouble making decisions about treatment methodologies as well as adhering to treatment plans. Through early diagnosis and appropriate therapy for distress patients have a tendency to enjoy a better quality of life and are more satisfied with their treatment as well as life in general.
Other benefits of appropriate therapy are an improvement in the doctor-patient relationship, a higher level of trust and respect for the medical care team and a greater adherence to following treatment regimens. Many experts do not feel that psychosocial intervention alone is a factor in increased survival time and advocate that continued research into this area is no longer warranted. I would add that it should be noted that widespread interventions of this type have not been done and as more facilities develop a working plan for distress screening and intervention new data may change the current thinking.As Powerful Patients we should all be aware of the elements of distress and stress that come into play in our lives. The recognition of that condition and appropriate measures to reduce these elements in our lives can be very beneficial.
While the links below can provide some additional information; a worthwhile suggestion is to have a conversation with our present medical care teams to see if a program is already in place, and to consider taking advantage of it.
You may be as surprised as I was to discover the presence of distress slipping stealthily beneath the radar!
Warmest Wishes, Best of Success: Mike
- 2010 Cancer Related Distress, Care Guide Update FINAL 12/2010 Healthways, Inc., Science and Medical Integrity, SD/AP
Mary Ann Burg PhD, MSW, LCSW
School of Social Work, University of Central Florida, Orlando, FL, USA
Distress Screening: An Opportunity for Enhancing Quality Cancer Care and
Promoting the Oncology Social Work Profession, Journal of Psychosocial Oncology, 30:6, 615-624
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