I was diagnosed with cancer after giving birth to my third child. The tumor had grown especially large thanks to my body’s hormones that had been growing my baby. The medical community helped my disease, but could not help my despair.
Then, five years after cancer -- and just after I finished my first triathlon -- I developed heart, liver and lung failure. My body was overtaken by damage from earlier cancer treatments. I remember one day vividly; I sat crying in my oncologist’s office after not being able to sleep for many nights, with wild mood swings, profuse sweating and persistent panic attacks. My doctor told me, “Well, at least we saved your life.” As if that was all I could hope for as I began to recover. He may well have said: “You’re alive. Be happy. Go away.”
Who would save my mind?
The medical community had no answers, and little care for the post-traumatic stress I was experiencing in the wake of my ordeal. And I wasn’t alone. Today it’s estimated that 1 in every 20 adults in the U.S. has survived cancer. While we are generally equipped with medical resources to help people survive their diagnosis, what’s missing from our system is the social, emotional and spiritual support for life after cancer.
When I was a social worker at the Mayo Clinic, and as a patient myself, I learned of the four well-known phases to cancer: discovery, diagnosis, treatment (a better way to put it might be “medical intervention”) and survivorship.
Typically, what survivorship has meant for most cancer patients is, “You’re done with medical interventions and care. Now go home and come back in three months for a follow-up scan.”
But what happens then?
Life immediately after cancer treatment is often a low point for patients. Not only is there a noticeable absence of structure when chemo or radiation ends, but the constant care and comfort of routinely seeing medical staff is also now gone. Add to that the physical problems of toxic medical interventions that were strong enough to kill the cancer but hopefully not enough to kill you and it only gets worse.
But wait, there’s more. Many people who surrounded the patient during their illness might pull away thinking they are now “cured." Helpful meals from the local church may have stopped, vacation time at work might have run out and family finances may be completely decimated.
To complicate things even more, the patient’s immediate family system may falter just after the heart of the crisis is over. It is not unusual for the spouse of a cancer patient to be distant, drained or even unfaithful after a huge upset like cancer. Sometimes the children of a parent with cancer can become unusually rebellious, anxious or depressed. And patients themselves often discover they have some residual mental health complications like major depression or severe anxiety.
In 2007, the Institute of Medicine published a groundbreaking report addressing the psychosocial aspect of healthcare for cancer patients. This report made it clear: Cancer treatments must include consideration and resources for the psychological and social needs of cancer patients. After all, cancer treatment is intended both to extend life and to improve the patients’ quality of life.
I wish someone had offered me a handbook for the fifth phase of my cancer experience. After my treatment I sought therapy, but, unfortunately, there are so many therapists who just do not know how to talk to a cancer patient.
A common form of therapy used by many clinicians is cognitive behavioral therapy, which teaches people how to investigate and change negative thoughts so that feelings and behaviors will align with a more positive way of being.
But that just doesn’t cut it. Take, for instance, a female client I had in her early forties with aggressive, incurable colorectal cancer. She was facing the entire removal of her external female genitalia and her internal reproductive organs as well as her bladder, colon and intestines just so she could have a bit more time with her young children. Can you imagine someone like her being able to simply “think” herself to a happier way of being? Most therapists’ training does nothing to prepare them for this kind of devastation, or this amount of grief.
To give cancer patients the treatment they deserve, we need to treat the whole body. That’s why psychosocial healthcare must be taught and integrated into every cancer treatment facility in the nation. It must become the new “standard of care” for every person finishing cancer treatments. Just like treatment protocols that outline which type of chemotherapy regimen and radiation schedule a patient should follow for maximum effectiveness, patients should have a fifth phase protocol as well.
How can we implement this? A staff member on the medical team must be designated as the “survivor specialist” to assist patients and their family members in referrals to a mental health professional who specializes in psycho-oncology. Classes should also be offered to coach patients and their caregivers on how to find hope during and after traumatic illness, become reconnected to their bodies after cancer and consistently take care of themselves in order to optimize recovery.
It is not enough that the Institute of Medicine reports it. We must follow its recommendation. If medical establishments are not offering psychosocial healthcare to their patients, they are not wholly treating cancer. And if our doctors and nurses are truly not taking care of the whole patient, should they be treating us at all?
Cindy Finch is a clinical social worker. She also teaches online classes in psychosocial healthcare at reimagine.me.
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