Alyssa G. Rieber, MD Institutions: Assistant Professor, The University of Texas MD Anderson Cancer Center; Chief of Medical Oncology, Lyndon B. Johnson General Hospital Specialty: Medical oncology Member since: 2006

By Alyssa G. Rieber, MD

My diagnosis of Hodgkin lymphoma during my first year of medical school dramatically influenced my career choice and later my interactions with patients and their families. I experienced the  reality of cancer at the young age of 21, just when I felt my future was starting. I spent my first year of medical school juggling chemotherapy, radiation, and first-year medical student studies. Because of my experiences of diagnosis, treatment, and survivorship, I am able to interact with patients and their caregivers from a richer perspective.

Diagnosis

A diagnosis of cancer universally affects patients and those around them in a profound way. The combination of shock, fear, anxiety, and anger is what I describe as a “personal earthquake.” Each loved one and patient processes a diagnosis differently, but all have to cope with an unknown future.

I was completely shocked by my diagnosis of cancer. I was a healthy, asymptomatic 21-year-old who was three months into my first year of medical school and had no prior experience  with cancer and no family history of cancer. I was worried about staying in school, having to repeat all of the gross anatomy that I had already completed, and struggling with my mortality all at the same time. 

I had a very strong faith, a strong support structure of family and friends, and an excellent prognosis, but it was still overwhelming.

In my interactions with my patients and their families, I acknowledge these feelings and give voice to them to jointly recognize this extremely difficult time. I also let the patient know that it’s okay to be angry, questioning, and to feel sorry for yourself. However, I encourage them to not dwell on those emotions. There will be good days and bad days, but cancer does not need to control their lives.

I also tell patients that the confusing time around diagnosis and start of treatment is the hardest part. Knowing that something is wrong and yet not actively treating it is difficult. It is a time when patients feel victimized and unable to start the fight. As their doctor, I work to make that time as short as possible and stress that the time for fighting will be here soon.

Treatment

My cancer treatment included four months of chemotherapy followed by radiation. I experienced the sorrow and irritation of losing my hair and typical treatment side effects: nausea, mucositis, constipation, esophagitis, fatigue, decreased appetite, and emotional lability. I underwent one prolonged episode of neutropenic fever and anemia, requiring 10 days of hospitalization and blood transfusions. I experimented with wigs and had an amazing hat collection. I thoroughly enjoyed not having to shave and my new ability to get dressed in less than 15 minutes. I also appreciated not having allergies for the first spring I could remember in a long time. My faith, family, and friends were extremely supportive, and my doctor and infusion nurses were vital to my coping.

In communicating with patients and their families, I try to set expectations of life during treatment. I can empathize with overwhelming fatigue and the pain of mouth sores. I understand the fear of hospitalization when you have no immune system, and you seem to be surrounded by coughing people.

I also understand the difficulty in forcing yourself to eat when you have no appetite. My guilty pleasure was to skip meals during treatment. I wasn’t hungry and had the horrible metallic taste in my mouth that made all food bland. I was extremely frustrated when my parents would force me to eat, and I still avoid two particular restaurants that remind me of that time. My only way to satisfy them was to drink nutritional supplements. I use this example with patients and their families. Many family members express their love and get a sense of control by forcing food on the patient. This leads to frequent battles. I gently encourage the family to back off and tell the patient to drink a shake to pacify their loved ones. By bringing this out into the open, I am able to voice the underlying feelings of each party and encourage reconciliation.

Survivorship

I found that I experienced two main crisis points during my cancer journey. The first was at the time of diagnosis, the “personal earthquake.” The second was more surprising to me. It was at the end of treatment. At a time when I thought I would be celebrating, I found that I was anxious about how to adjust back to a normal life. I had been in crisis mode for many months and didn’t know how to live a life not focused on cancer.

I talk about this with many patients and their families when their curative therapy is complete and they transition to surveillance visits. I let patients know that this is normal and that they need to be patient with themselves. Many times they experience stress when loved ones expect them to “snap out of it” and go back to the life they lived before. I explain to patients that they are typically changed forever by their diagnosis and will not be exactly like they were before. For family members, I stress that it can take a long time for people to recover emotionally and physically. Having these discussions during an office visit allows for an honest conversation in a safe environment. I also know firsthand the underlying anxiety and fear of recurrence that never quite goes away. After completing therapy, I initiated daily lymph node evaluations and frequent hypochondriac episodes. Even though much time has passed, I still have moments of concern. I have long-term effects related to treatment and undergo high-risk surveillance for breast cancer due to my prior mantle radiation. If I allowed myself to voice it, I would say I’m always waiting for the next cancer to come and will not be surprised if I get diagnosed in the future. For this reason, I encourage patients to call with any concerning symptoms. I don’t want them to live in anxiety and fear when we can quickly determine if it is something of concern or not. I am quick to give a patient a drop-in appointment and address their anxiety first thing. I rejoice with them when all is well and grieve with them when cancer returns.

In general, my cancer experience has made me more compassionate and connected with my patients and their families. I laugh, cry, and pray with patients frequently. I disclose my personal history occasionally, and only when I think it might encourage the patient or their families. I am grateful that I had my experience and truly believe that God has used it to shape my career and benefit others.