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. "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 one 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.
This type of support, psychosocial support -- care for the social, emotional, and spiritual aspects of the patient -- is what I call the fifth phase of cancer.
In my job as a social worker at the Mayo Clinic, and as a patient myself, I learned there are four well-known phases to cancer: The first phase often involves the presence of a symptom like a lump, bump, mole, fever, cough or pain (among other things). This phase almost always involves a visit with a doctor and a significant amount of worry.
The next phase usually involves having your blood drawn and some sort of diagnostic scan (CT, MRI or PET just to name a few). This is where your physician may often confirm that you actually have a malignancy, begin using a specific name for it (like triple negative breast cancer) and plan for its removal.
The third phase, often referred to as "treatment" is the phase where medical interventions are used to "fight" or stop your cancer. Traditional interventions used during this phase include chemotherapy, radiation, surgery and/or oral medications. In some cases patients will receive a bone marrow transplant or other forms of care.
The fourth phase of cancer is typically called 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 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.
"Life immediately after cancer treatment is often a low point for patients."
But wait, there's more. Many people that 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. Even patients themselves often discover they have some residual mental health complications like major depression or severe anxiety. To make things even harder, most patients experience physical changes like infertility, chronic or severe pain, sleep problems, struggles with their "new" body and more.
What's missing, and what is so needed during this time, is a fifth phase of cancer, or the social, emotional, spiritual and psychological support for life after you are sent home to recover.
In 2007, the Institute of Medicine published a groundbreaking report addressing the psychosocial aspect of health care for cancer patients. This report makes it clear: Cancer treatments must include consideration and resources for the psychosocial needs of cancer patients. The Institute of Medicine called on health services "to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health." After all, cancer treatment is intended both to extend life and to improve the patients' quality of life.
If the medical community does not offer this other half of care, they are not treating cancer. And, most often, they are not.
"I wish someone had offered me a handbook for the fifth phase of my cancer experience."
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 (especially those in hospitals) is cognitive behavioral therapy, or CBT. CBT teaches you how to investigate and change your negative thoughts so your feelings and behaviors will align with a more positive way of being.
But that just doesn't cut it. For instance, a client of mine in her early 40s with terminal colo-rectal cancer was facing the 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 my client being able to simply "think" herself to a happier way of being? She was devastated about the loss of her femininity, her new way of life with external bags and lines to manage her toileting needs, and the loss of her sex life. Most therapists' training does nothing to prepare them for this kind of devastation or this amount of grief.
So, what can we do to make sure those of us who contend with cancer get the help they need?
Psychosocial health care must be implemented at 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" who will assist patients and their family members in referrals to a mental health professional who specializes in psycho-oncology. There would also be classes, such as the online classes that I teach at www.reimagine.me, 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 their recovery.
How do we implement these massive changes? It starts from the top.
Congress must mandate that the Institute of Medicine's recommendations become a top priority in our nation's health care agenda. Next, we need to get the medical community to acknowledge the need for a fifth phase of cancer treatment: psychosocial care. This can be done by implementing "care for the whole person" education in every medical and nursing school. In addition, licensed physicians, nurses, psychologists and social workers should be required to complete education about the fifth phase as a condition of renewing their medical license. Then we need to get insurance companies, beginning with Medicare, to reimburse for psychosocial health care. Hospitals could educate their staff about the importance of psychosocial care, and roll out fifth phase care to every cancer patient (and their caregivers) with the help of the "survivor specialist."
Patients should also have access to educational classes, videos and booklets before their treatments begin. These tremendous tasks don't end at the hospital. Chaplains, therapists, pastors, rabbis, and priests need to be educated about the importance of their role in helping their parishioners and patients during this critical fifth phase of cancer treatments.
"If medical establishments are not offering psychosocial health care to their patients they are not treating cancer."
It is not enough that the Institute of Medicine reports it. We must begin to live it -- if medical establishments are not offering psychosocial health care to their patients they are not treating cancer. And if our doctors and nurses are truly not treating cancer, should they be treating us at all?
Won't you join me in making this need known? Let's bring change to our nation's health care system by providing care for cancer patients after they are done with medical treatments so they never have to hear, "Well, at least we saved your life" as an explanation again.
Cindy Finch, MSW, LICSW
The information provided in this column should not be used for diagnosing or treating a physical or mental health problem, disease, or condition. If you have or suspect you have a medical or psychological problem, please consult your medical doctor or psychologist or appropriate health care provider. If you think you have a medical or psychological emergency, call 911 immediately.