When Cancer Hits Close to Home

Grim News

On the week before my first interview for a hematology and oncology fellowship, however, my mother was diagnosed with metastatic breast cancer. She had hit that magical 5-year mark just 1 month prior and thought she was cancer-free from her original diagnosis when she felt “funny” as she slept on her left side, so she brought this to the attention of her doctor. The cancer had spread to her lungs and bones. I completely fell apart at the news and wasn’t sure how this diagnosis was going to change my future.

After much discussion with my family I decided to continue the interview process and complete the application for fellowship, for better or for worse. I am not sure how I came across on my first interview 2 days after receiving the news but soon after I matched into a fellowship program.

The 3 years of my fellowship were spent trying to balance the duties of being a mother, wife, and physician, all while trying to help my parents maneuver to and from multiple medical facilities to obtain cancer care and ultimately make difficult decisions with them at the end of my mother’s life, which came during the third year of my fellowship. The experience of losing a loved one to cancer during this pivotal time in my oncology training fundamentally shaped my understanding of the concerns, needs, and fears of patients and their families as they navigate the unpleasant realm of cancer diagnosis and treatment.

Most patients and families are filled with anxiety and fear prior to follow-up oncology visits, particularly when awaiting test results. When my mom first noticed a discomfort while lying on her side and thought she felt some axillary fullness, my entire family knew deep down that this represented recurrent, metastatic disease. Even though we knew what was about to come, we prayed that her CT scans would just show scar tissue, an infection, or any other etiology for what my mom was feeling in her body. When my mother’s first physician explained there were “shadows” on her lungs and bones, we were overcome with a second wave of fear and anxiety, and yet we again prayed that the biopsy results would show anything but cancer. I even tried to read my mom’s CT scans and fought back the tears when I read “innumerable pulmonary nodules” and “multiple sclerotic lesions.” I was amazed that for every follow-up visit that my mom had, we could usually tell what the test results were going to show by how she was doing clinically. Yet the anxiety of seeing the results in print was overwhelming. Most of the time the anxiety we endured while awaiting a test result was far worse than the emotions we felt after receiving bad news.

Patients and their families often see only what they want to see; they look for any possible reason for a patient’s decline other than the prospect of disease progression. My mom had done quite well clinically for about 2.5 years, until about May 2010. I was on my way to the NCCN conference when my dad called 3 times in a row and didn’t leave a message. I knew that meant he was upset. My parents had found out that day that her follow-up CT scans showed 3 new lesions in her liver. She had otherwise been feeling well. Her doctors decided to switch chemotherapy. Although scared, I was not completely discouraged since she had responded to 1 chemotherapeutic regimen for those 2.5 years. However, in the following months, she began to lose weight and feel more fatigued. In retrospect, I believe that even as a physician who was trying to be the voice of reason, I looked for any explanation for her decline other than metastatic cancer (because that’s what a good internist should do). I had decided that maybe it was depression.

I was convinced that she had heard the news of a new metastatic lesion and assumed this was an immediate death sentence and that this fear caused her to lose significant amounts of weight and energy. She was also found to have elevated blood sugar on multiple occasions, and I thought that this uncontrolled diabetes was surely contributing to her decline.

One week before my mom died, my dad called me to ask about her worsening shortness of breath. They had planned a trip to Florida for the following day. I hadn’t seen her in a few weeks, and my first thought was that she had reaccumulated pleural fluid and that they should have taken care of this before the Friday afternoon of a holiday weekend. I asked, “Are you sure she looks okay to get on a plane?” and my dad (a physician himself) responded, “I think so. It doesn’t seem too bad, it’s just noticeable, and she really wants to go to Florida.” I was to meet them there 2 days later but the morning I was to depart, my dad called from an emergency room in Florida saying that my mom couldn’t wait and needed a thoracentesis right away. When I arrived in Florida I saw a completely different person from 3 weeks prior. My mom was now wheelchair-bound, had ascites and pitting edema, and had to sit completely upright to breathe, despite the thoracentesis. I couldn’t believe that my father had not seemed to notice my mother’s dramatic decline.

Differing Perspectives

In retrospect, I realize that even those of us with medical training can have a very different perspective when it comes to our own loved ones. I had a hard time accepting that her weight loss and fatigue could be signs of worsening cancer, and my father had a hard time seeing that my mother was actively dying in front of him. This experience made me understand how my patients’ and their families’ perspectives may differ. It also reminded me of the patience required to help a family deal with life and death.

Many times it is harder for those who will be left behind than for the patient with cancer. Prior to my mother’s diagnosis of metastatic disease, Elizabeth Edwards, the wife of former Senator John Edwards, was diagnosed with metastatic breast cancer. My father hid every single newspaper in their house because he didn’t want my mom to be reminded that she was sick. When my mom was diagnosed with leptomeningeal disease 6 weeks before her death, I recommended to my dad that they should consider rearranging the house and getting a hospital bed in the living room to make it easier for her to get around. I also tried to talk to them about hospice care. However, he didn’t want her to “feel more sick by seeing all of that equipment” or feel like they were giving up. Two days before my mom died she finally decided to enroll in hospice. But even then my father asked me, “Do you think Mom might change her mind and get more treatment?” Watching my dad losing his life partner of 43 years was incredibly eye opening for me. Because even after my mom had tried to spend the last months enjoying her life, being with family, and accepting that she was dying, my father just couldn’t bear to do this.

Finally, I have learned that the cancer experience doesn’t end when the patient completes treatment, is deemed cured, or dies. Just over a year has passed since my mom died on September 11, 2010, and not a day goes by that I don’t think of her. My dad often expresses various regrets, such as wondering whether my mom should have seen a different surgeon at the original diagnosis. What has been an invaluable lesson to me as an oncologist is that this experience still continues even though we are no longer in contact with my mom’s doctor.

So do remember that your patients and their families live with the cancer experience well beyond the time they spend in your office or in the infusion suite. I don’t regret pursuing oncology, and I feel that now, more than ever, I have a unique perspective on helping people because I have experienced the impact of a cancer diagnosis and cancer death in my own family. Fellows are not immune to the effects of these types of diagnoses when cancer hits home, but we can grow from these experiences and provide even better care to those who seek our help.

Josephine Feliciano, MD, is a junior faculty member at the University of Maryland’s Marlene and Stewart Greenebaum Cancer Center in Baltimore.