Updated 11:12 a.m.
I am not a cancer survivor … yet.
There’s a very good chance that I’ll want to be, though. I’m under no illusions that I’m exempt, especially given the amount of cancer in my family tree. Both of my parents are cancer survivors, actually — not bad odds if you’re talking about surviving — but not particularly good odds if you’re talking about escaping cancer in the first place.
So you could call it selfish anticipation of my own needs that drives my call for better support for cancer survivors. “Why support the survivors?” you ask. “They’re the lucky ones.” Well, yes, but that doesn’t mean they haven’t fought the long, drawn-out battle for life and death that consumes everything in its path and has the potential to leave one broken and shattered.
A growing body of medical research indicates 1) cancer survivors continue to experience depression and anxiety 6 months after being declared “disease-free,” 2) while post-cancer depression may decrease on its own, post-cancer anxiety does not and 3) the anxiety experienced is separate and distinct from fear of reoccurrence.
The Consensus Report, From Cancer Patient to Cancer Survivor: Lost in Transition (2005), accurately identified “what has often been ignored is the toll taken by cancer and its treatment on health, functioning, sense of security, and well-being. Long lasting effects of treatment may be apparent shortly after its completion or arise years later. The transition from active treatment to post-treatment care is critical to long-term health.”
The book recommends “improvements in the quality of life of cancer survivors through policies that ensure their access to psychosocial services, fair employment practices, and health insurance.” All well and good, you say, but if this report came out in 2005, why are all the newly-cancer-free survivors I know still being given little more than a handshake and a hearty ‘Congratulations!’ on their final doctor’s visit?
Seven years later, The American College of Surgeons Commission on Cancer (COC) issued Cancer Program Standards 2012: Ensuring Patient-Centered Care, mandating that all organizations create a formal plan for survivorship care by 2014 and implement that plan by 2015 in order to maintain accreditation. Great! The problem has been recognized twice over now. One of the new standards requires psychosocial distress management services be available to the survivor, on site or by referral. Wonderful! Exactly what’s been missing!
So, what’s the current hold-up? When I posed this question to someone at the National Institute of Health (NIH), I was told that cancer centers seem to be terrified of providing psychosocial distress screening, intimidated by not knowing where to send patients who do show distress and petrified by the responsibility should they uncover suicidal ideation. So, if we don’t look for it, we can’t find it, and therefore we don’t have to treat it? Is that it?? Let me say that, as a health psychologist, I do understand the fear that mental health issues (and in particular, the words “suicidal ideation”) engender in many non-mental-health professionals. I understand too the stigma with which they are often greeted in the layperson’s world. And yet …
In a world where survivors are given the constant message, “You reached the end of the race, you made it! You must be so grateful!,” it can be impossible to admit that you feel terrible or to ask for help.
The truth is that the survivor’s world has been rocked to its very core, her identity has been fundamentally shaken and cannot go back to what it was before. Many survivors had to leave work to go through treatment and have lost the identity their careers once brought them. Others may not look the way they used to physically, especially if surgery was involved (think mastectomy or removal of a jawbone). Their very body looks alien to them and it may be difficult to face looking in a mirror. Survivors who are single do not even have the comfort of their role within a family to give them identity. Who are they now, post-cancer? One woman I know said, “I wanted to talk about something else than cancer, anything else, but I didn’t have anything else going on in my life to talk about.”
Another survivor related the disconnect she’d felt at her parents’ church, surrounded by curious parishioners exclaiming how blessed she was for the Lord to have cured her. “I know I’m supposed to be grateful,” she said to me. “I made it. So why am I having such a hard time? What’s WRONG with me?”
Another survivor shared, “When I went in for chemo, someone spent an entire session, for as long as my husband and I wanted, giving us a tutorial on “What to Expect in Chemo” and answering all of our questions. It would have really been helpful if someone had done the same thing at the end of my treatment, a “What to Expect After Cancer” session. Because it takes a long time to recover. I spent two years being “The Cancer Patient.” Just because you’re told you’re ‘cancer-free’ again, doesn’t mean you can bounce right back into the way you used to be. It’s more like being left at the bottom of an empty swimming pool, no longer in danger of drowning, but having no idea how to find your way back out by yourself.”
There are a few visionary places which have begun to address this need. A university here, a return-to-work program there, a community-based support group in certain locations. For the rest of the vast community of cancer centers, however, I have to ask, “What’s taking you so long?” I’m going to need your help.
Nadia Ali is a health psychologist on faculty at Emory University’s School of Medicine, in the Department of Human Genetics. She has over 15 years experience providing psychological care with medically ill populations. She is also an Op Ed Project Public Voices Fellow.
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