Guest Post: Forgotten Survivors—Supporting the Needs of Patients with Advanced Cancers

Guest post by Lillie D. Shockney, RN, BS, MAS, Director of Johns Hopkins Breast Center and Cancer Survivorship Programs. On November 19, 2014, NCCS will present the Catherine Logan Award for Service to Survivorship to Lillie at the Focus on the Care evening reception in Washington, DC. 

Though more and more cancer patients are being diagnosed today than ever before (1 in 2 men and 1 in 3 women, based on the American Cancer Society ) more and more are becoming survivors of their disease and treatment. This can result in those who eventually lose their lives to this disease being less noticed and in some cases, forgotten. They are forgotten cancer survivors. Some may live only a few months post diagnosis while others may live a decade or more. Their issues and concerns are not the same as those who are believed to be cured from their cancer. They have unique needs that all too often go unaddressed.

I routinely ask newly diagnosed patients what their life goals were prior to learning they have been diagnosed with cancer. Often times the response will be, “it doesn’t matter. Just please save my life.” But it does matter and it should matter. We should make every effort to keep the patient on track for still being able to achieve these goals. A newly diagnosed 35 year old who is a newlywed and was hoping to start a family next year will likely need to get into fertility preservation before a port is ever inserted into her body for chemotherapy administration. If she is a secretary at a bank but her real passion is to become a concert pianist, then we should make every effort whenever feasible to keep far away from her drugs that we know will cause peripheral neuropathy, thus robbing her of her career goal. This disease doesn’t deserve any more of her time than it takes to get rid of it. Not her personal time, professional time, work time or family time. Though it is a life altering experience, we still hope that she comes out on the backend doing well, side effects prevented or diminished as best we can achieve for her, and her still on track to achieve her pre-established life goals. It is not unusual after completion of treatment that a patient will say to me that she has added more life goals, now having gotten in touch with her own mortality.

So what happens to the life goals of the patient with metastatic disease who will not survive to likely achieve goals that are far reaching into her future? I still want to know what those goals are. Some goals will be related to her hopes for her children’s future. And while she remains a survivor, her personal goals and treatment goals should dovetail. Because treatment for treatment sake is bad treatment. I will work with her to help her achieve her life goals in alternative ways. I will support her in orchestrating for her and with her a good death. Knowing she had purpose for living and it was valued by at least one other person, giving and receiving forgiveness, leaving a legacy which doesn’t mean necessarily leaving money, knowing she will be spoken of fondly after she is gone, leaving no financial debt associated with her cancer treatment for her family to have to pay, feeling spiritually connected to a higher power, having no regrets, affairs legally and financially in order, and pain free. The following short video provides you a window into the lives of metastatic breast cancer patients and their spouses. It provides examples of what their worries are that to date had gone unaddressed. It also demonstrates how we can help a metastatic survivor prepare for end of life and in doing so have her life goals still achieved, but in alternative ways.

I don’t tell a patient that I am sorry I don’t have another treatment option or am sorry that she is too sick to get another remaining treatment. I instead focus on her life goals and make them a reality through creativity and careful and thoughtful planning. I can then look back after her passing and feel a sense of personal pride that I was able to orchestrate a good death all on her terms. Dying with dignity, affairs in order, alternative methods of instilling her values in her children successfully happening,  leaving no financial debt related to her cancer treatment for her family to wrestle with,  at peace.

21% of cancer patients with metastatic disease die in an ICU because of poor communication. The expression, “I am hopeful your tumor will respond to this next treatment” to a patient with incurable cancer means to them “I will be cured. Respond means cured.” We cannot save everyone but we can help orchestrate a good death for everyone who cannot be cured. And best of all, hope remains intact, having evolved over time to being originally the hope for a miracle cure, to hope for longevity with quality of life, to hope for remaining time having quality of life as the priority to finally wanted to experience a good death. She leaves this world pain free, knowing her hopes for her family have been heard and will be alternatively addressed. Her legacy is large and leaves a wide wake as she sails to a distant shore.

NCCS has always recognized that anyone who has had a diagnosis of cancer and is living is a survivor. Society has not embraced those with advanced disease as being survivors however. We owe this special survivor population our respect, and support that best serves their needs. After all, the next time we look into a bathroom mirror and see someone staring back at us, that someone could be a patient newly diagnosed with metastatic disease.

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