Coauthored by Dr. Don S. Dizon and Agnes Sarthou
Among the issues in survivorship, patients living with cancer as a chronic condition is a topic close to my heart, especially since many of my own patients with ovarian cancer are typically not cured, but will recur and live many years with their disease. Still, for these patients who are on continuing anticancer therapy, and in whom “cure” is not (or no longer) a part of their cancer journey, a constant question comes up: “Am I a survivor?”
Today, patients living with advanced or metastatic cancer (hence, not “curable”) are being encouraged to seek palliative care, and with good reason—at the very least, early palliative care improves quality of life for both patients and those that support them, and it may improve their survival as well. Although we are learning that palliative care encompasses so much more than end of life, the idea that palliative care is synonymous with hospice remains strong among patients and providers. Indeed, the question of when to refer a patient for palliative care remains an issue many of us struggle with, and I know that for patients, it’s an even bigger issue. I remember when my friend was diagnosed with metastatic breast cancer to her brain—she sobbed for days when her doctor referred her to palliative care, thinking it a sure sign she was dying.
The dilemma of how best to care for the patient with metastatic disease was made clear during a conference I attended on my home island of Guam at the invitation of a colleague, Roselie Zabala, Health Services Administrator at the Bureau of Community Health Services for the Department of Public Health and Social Services on Guam. She asked me to speak on “living with breast cancer as a chronic condition.” The program covered the gamut of issues in breast cancer, from diagnosis to treatment and beyond.
The talk before mine was to be given by a woman with breast cancer; I assumed she would be an advocate to call for screening and prevention, or to address the myriad survivorship issues women struggle with after undergoing treatment for breast cancer.
I was sitting at my table reviewing my slides, ensuring the presentation all made sense (because, yes, I still get nervous). That’s when Agnes “Aggie” Sarthou was introduced to the audience. I recall hearing “stage IV breast cancer”—a phrase that caught my attention quickly. I closed my computer and sat back to listen to her story, which Aggie has kindly shared with us here:
“Blessings come in unexpected packages. May 2003 was a turning point in my life: my surgeon cut out a 10.5 cm tumor from my right breast. I was also told that the cancer had spread to my seventh and eleventh rib. I was diagnosed with stage IV breast cancer. Being a diabetic, the treatment was physically draining. The chemo concoction distressed my system and made me severely hyperglycemic—my glucometer would read ‘HI,’ my sugar levels went beyond what it could normally measure.
“By God’s grace, I did not go through any depression, except for once, when I was counting the bills! Indeed, cancer has a way of damaging every part of the patient's body, including the pocket! Looking back, the worst part of that initial journey was paying off my medical bills, without any guarantee of survival!
“Though we do not have control over the length of our days, we have the choice how to live them. As I realize this indisputable truth, I went on an ‘anger fast’—I made a choice not to focus on what doesn’t work and, instead, accepted the fact that we are fallen and imperfect. Our bodies give out. We don’t exactly know how long or short we will live, but we get to choose how we maximize the interlude between now and the time we meet our Creator face to face.”
Aggie referenced Proverbs 17:22: “A joyful heart is good medicine, but a crushed spirit dries up the bones.”
She coupled the discussion of treatment with another aspect, facing her mortality. She spoke of the breathlessness she initially experienced, and how with her faith and a strong sense of spirituality, she worked through it, and grew to accept it, and in that acceptance found the freedom to live life.
“The moment I entered the Valley of the Shadow of Death, things changed. I was able to clearly discern the ‘major’ from the ‘mundane,’ the important from the trivial. I sought to simplify my life and to live according to what mattered most: relationships. As I went through the cancer journey, I experienced many twists and turns that seem to defy endurance… yet in the midst of pain and facing the prospect of death from cancer I experienced supernatural peace and joy which made cancer practically irrelevant.”
Aggie spoke of her faith and the brevity of life. She told her story with humor, but more than that, she spoke as only someone who had lived through (and with) breast cancer could’ve spoken.
“Cancer cannot shorten nor lengthen the days of my life. This has been decided by my Maker. I don’t know when or how I will die, but this I know: while God chooses my life’s circumstances, I get to choose how I will respond. I should not focus on adding days to my life. Rather, I should be more concerned with adding life to my days, with or without cancer.”
She ended with a catalog of all she was doing: advocacy, outreach, peer-to-peer support, community events, and worldwide outreach. She ended with this: “I don’t know why I had cancer, but I thank God for the cancer. I thank God for this amazing journey: it allowed me to see the invisible, believe the incredible, and experience the impossible.”
As she spoke, I marveled at how well she looked, and how well she apparently had responded to treatment. That’s when it struck me—no one with stage IV (newly diagnosed), advanced, or metastatic cancer has an identical experience. Some are very symptomatic (psychologically or physically) while others are just fine. And they are all survivors. Hearing Aggie speak, I realized this was not someone in need of palliative care. Indeed, the very phrase seemed to be wrongly applied.
Aggie is certainly not the only person for whom I felt this was the case. My clinic was filled with women living well, despite advanced or metastatic gynecologic cancers. Yet, I felt as if it was irresponsible to me not to offer palliative care,
Hearing Aggie’s experience also made it clear that when we construct our guidelines, it is so important to provide the latitude for patients and their providers to make determinations about appropriateness. It is hard to imagine that the woman before us today would’ve been in palliative care at diagnosis of metastatic breast cancer all these years, a breast cancer journey that has extended beyond a decade and still continues.
Nov, 10 2017 8:35 PM
Aggie has a wonderful outlook that no doubt helps her overcome the obstacles she faces with adversity. However, not all cancer patients know themselves as well as Aggie knows herself, and they would benefit from palliative care services. If they decide it's not for them, they can always stop. Even though you may know your patients very well, there isn't enough time in the world for you to get to know them totally. You may feel they are doing fine when in fact they are not. I wish someone had referred us to palliative care during our loved one's struggle with cancer. We went to a large teaching academic center, but no one ever mentioned it.