Survivors’ Guilt: Dealing with Anxiety and Questions Years after Successful Cancer Treatment

Survivors’ Guilt: Dealing with Anxiety and Questions Years after Successful Cancer Treatment

Don S. Dizon, MD, FACP

@drdonsdizon
Sep 29, 2015

When I became an attending at Memorial Sloan Kettering (MSKCC), I inherited a panel of patients from one of our doctors who had recently retired. One of them was Alice*, a spritely 70 year-old female. She had been diagnosed with stage III ovarian cancer in her fifties. She had surgery for it locally, was told she had advanced disease, and then was sent to MSKCC for an opinion. This was back in the 1970s, well before the time that cisplatin or paclitaxel were available, when survival was dismal, so much so that patients who lived beyond expectations could be the subject of a research case report.

She was given an oral chemotherapy—cyclophosphamide—for six months. After that, she entered follow-up, living with the knowledge that the chances of her “making it” were very poor. Yet, year after year passed, until she was a five-year survivor, then 10, and then 20. She had continued in follow-up even after her surgeon had stopped operating, and now her medical oncologist had retired.

So, here I was, a junior attending learning the field of gynecologic oncology, seeing someone who actually “beat the odds.” I expected her to be full of wisdom, happiness, and gratitude. How else would someone feel after not dying of ovarian cancer? Surely, she considered herself the luckiest woman alive.

But it was not the case. True, with each week, month, and year that passed she was happy to be alive—to spend more time with her husband and see her children grow up and eventually marry. Yet, no matter how much time had passed, she continued to wonder, “Why did I make it?”

She remembered the women she had met when she was first diagnosed, and she told me of phone numbers exchanged in the waiting room of Memorial Hospital and lunches with that same group in New York. She also remembered seeing so many of them relapse. She watched as they would lose their hair, remembered visiting them in the hospital, and then as each one died, attending so many funerals.

As she recalled these things, she became tearful. I am so lucky to be alive, but I can’t help but wonder, “How did I make it?”

Women like Alice remain a select minority of our patients who once had ovarian cancer. While she had survived, it was clear she had done so with not a few emotional scars.

I thought about Alice as we celebrate Ovarian Cancer Awareness Month in September. After all, I am aware of the statistics. A recent paper by Jason Wright and colleagues from Columbia University reported that there has been an improvement in the relative survival for women with ovarian cancer diagnosed between 1975 and 2011, but this has been achieved by improvements in the duration of survival of women living with recurrent disease, not by increases in the cure rate, which despite some progress is still less than 15% at ten years.1

So, while most of our patients are achieving survival with ovarian cancer, it is ovarian cancer as chronic disease. Hopefully, we are doing a better job of making those lives as productive and meaningful as possible.

There is a term that comes to mind: survivors’ guilt. Historically applied to Holocaust survivors, it has been used to describe the experience of patients who test negative for a genetic mutation when another person in the family tests positive and in patients like Alice who are long-term cancer survivors. While the data suggest that the sense of guilt is usually short-lived, I have met several women who have faced ongoing issues, even years after their diagnosis. Sometimes they complain of anxiety, as if waiting for the “other shoe to fall off,” while for others, it is sadness. Most often, they just want an answer to one question: Why me?

I hope that one day I can look at women like Alice and tell them why they survived. There are efforts to do just that. One of them is led by my colleague, Mike Birrer, in collaboration with the Gynecologic Oncology Group (now NRG Oncology)2. This project seeks women who are at least 10-year survivors of ovarian cancer and aims to characterize the molecular features within their tumors, their own genetic and lifestyle features, and to study their quality of life. The hope is to identify precise biochemical pathways and genetic features associated with long-term survival that can be used to improve the treatment, survival, and survivorship of patients with this disease.

Importantly, this Long Term Survivors Study takes advantage of modern technological tools to try to unlock the reasons why some women do much better than others who face advanced ovarian cancer, particularly through a better understanding of tumor biology (including what enables these cells to grow and survive, and how they interact within a woman’s normal cells and structures). The study also hopes to gain a better understanding of how psychological factors can affect outcomes, as well as gain a better understanding of how quality of life evolves as one progresses through cancer and into the distant future.

References:

  1. Wright JD, Chen L, Tergas AI, et al. Obstet and Gynecol 2015; 125: 1345.
  2. The DOD Long-Term Survivors of Ovarian Cancer (LTSOC). Available at: https://clinicaltrials.gov/ct2/show/NCT02321735

*Name and details changed to protect anonymity.

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