In this edition, Vania Hungria, MD, PhD, describes her early interest in physical education instruction, her work with the International Myeloma Foundation in Latin America, and how her own lymphoma diagnosis taught her what not to say to patients.
Where did you grow up? What was your childhood like?
I was born and raised in Itapetininga, a small city in the countryside of SÃ£o Paulo, Brazil. My two brothers and I had a happy, "free-range" childhood, spending time with family and friends outdoors. In a small city like Itapetininga, families lived close to each other, so I also grew up with my five cousins nearby. We were like siblings, together all the time. I played with dolls, but I was a tomboy, too.
My family also owned a farm where we grew and harvested coffee beans and raised horses and other animals. Our farm was close to the city, so I would often spend vacations there, riding horses and playing with the other children.
Did you always know you wanted to be a doctor?
Taking care of people has always appealed to me, and it was something I started doing at a young age. I took care of my siblings and cousins whenever they got hurt, which was fairly often since we were always outside playing. Whenever someone had a minor injury that did not require a doctor visit, they became my "patient" and I administered first aid.
I also loved sports. When I started college, I was planning to pursue a career as a physical education instructor. I played basketball, handball, and – my favorite – volleyball. I played very well, representing my school, my city, and my country club. But, after only one month of college courses in physical education, I realized that playing sports is different from teaching physical education. I left for SÃ£o Paulo to study medicine and pursue my dream of becoming a doctor.
Walk us through your career. What drew you to pursue hematology and to specialize in myeloma?
As an undergraduate, I wasn't interested in hematology – I just knew that I wanted to be a clinician, to take care of people. My first choice of specialty was endocrinology, but at the end of the course I became interested in dermatology. I kept changing my mind! When I did my residency in clinical medicine, though, I became fascinated with hematology/oncology.
Originally, I was drawn to studying leukemia, but later became interested in myeloma and direct patient care, rather than working in a lab. At that time, in the 1980s, we did not have good treatments for patients with myeloma. I decided I needed to change that to help these patients – it is not an easy undertaking.
When you were in training, was there a mentor who influenced your desire to go into myeloma?
My professor, Carlos SÃ©rgio Chiattone, MD, PhD, pushed me toward hematology/oncology. Of course, I started with general hematology in my residency, but afterward I chose hematology/oncology, and then myeloma. I admired how much he loved caring for patients.
Dr. Chiattone's area of expertise is lymphoma, and our mentoring relationship is unusual because he also became my doctor when I was diagnosed with lymphoma 13 years ago.
Tell us about your lymphoma diagnosis. How did it affect your career and your approach to patients?
The initial diagnosis I received was wrong – I was told I had a type of aggressive cancer with a very poor prognosis, giving me only six months to live. So, my first response was fear. When I received the correct diagnosis of lymphoma, a disease with a much better prognosis, I felt relief along with the fear.
It was a terrifying experience, but I learned so much about the patient's perspective – their fears and emotions. Most importantly, I learned not to say, as the doctor, "I understand how you feel." Being the patient is totally different from being the doctor; we never know what the patient is feeling. I think I am a better person and a better clinician for it. Fortunately, I had a lot of support from family and friends.
I started treatment immediately. I learned what it was like to undergo chemotherapy and lose my hair, which was something I never hid with wigs. So many patients ask me about how they could possibly deal with some of the side effects of treatment. In fact, one of the questions I hear most often is, "What do I do about losing my hair?" I hear that from men and women! I am glad that I can help patients with questions like this.
I had been involved with the International Myeloma Foundation (IMF) since 1998. In 2004, we started IMF Latin America, with the goal of bringing patients and the medical community of Latin America the same services available today in the U.S., the U.K., and Japan. Every year we hold a patient seminar and in August 2008, immediately after starting treatment, I decided to attend and speak about my experience with cancer. It was amazing.
Do you typically share your experience with your patients?
If my patients ask me about my experiences, I share them. I think it brings us closer and strengthens the relationship. Once they know that I experienced cancer, chemotherapy, losing my hair, they start to open up to me more. The shared experience closes the distance between our roles as "doctor" and "patient" and helps us connect on a human level.
What would you say is the greatest accomplishment of your career?
When I began seeing patients with myeloma, I wanted to change the experience of patients living with myeloma, even if it was only to improve supportive care. In the early 1980s, there weren't good treatment options available. Patients suffered from kidney problems, anemia, renal failure, bone disease causing pain and fractures, and other effects of the disease.
So, I created an outpatient unit with orthopedists, nephrologists, and other specialists to see patients with myeloma. I also began searching for clinical trials to improve myeloma treatment options for patients in the public health system. In Brazil, like in many other low- to middle-income countries, there is a wide gap between the private and the public health system. The public health system does not cover the best available treatments for patients with myeloma. For patients who need to use public health care, their best shot to receive newer, more effective therapies is to participate in a clinical trial.
My greatest accomplishment has been connecting these patients with clinical trials that offer them the best treatments possible. It is also important to teach the younger generation of doctors to continue trying to effect change to benefit their patients.
I am also proud of my involvement with IMF Latin America and how the organization has grown. Approximately 800 patients and caregivers attended our last in-person patient seminar in 2019. In 2020, because of the pandemic, we transitioned to a virtual format with five speakers broadcasting from a studio and more than 4,000 attendees. The silver lining of the virtual format was that patients and caregivers from across Latin America, Spain, Germany – everywhere! – were able to access the seminar.
Patients want to learn more about myeloma and we give them the opportunity to hear from international speakers and doctors about the latest advances. I love communicating with patients through my work with IMF Latin America, whether it is through live streaming events, online chats, or podcasts. My work with the IMF also keeps me connected with colleagues through programs like the annual Master Class, which brings together a speaker from the U.S., a speaker from Europe, and a small group of early-career doctors to learn about myeloma research and discuss interesting cases. We also held this event virtually last year. Even during this pandemic, there are so many ways to stay connected.
What are you most looking forward to when the COVID-19 pandemic is over?
The pandemic has restricted the amount of time I spend with patients in person at the hospital and the outpatient clinic. We frequently see patients via telehealth, which was something unimaginable to me a year ago.
After the pandemic, it will be nice to spend more time with patients in person, but aside from my clinical practice, I'm looking forward to hugging again! Most people probably dream of traveling to an island paradise when the pandemic is over. I love to travel, too, but most of all, I cannot wait to gather with, hug, and kiss my loved ones.
Tell us about your life outside of medicine – what are your hobbies?
Before the pandemic, I loved to travel and visit places I have never been before with my husband. Unlike my husband, I love the snow and love to ski. So, my husband and I travel to certain places together and once a year, I go on a ski trip with a group of about 20 to 30 family and friends. The last trip my husband and I took together was to Botswana before the pandemic. My last skiing trip was in January 2020, when I went to Italy with my brother, my sister-in-law, my niece, and my friends. It's hard to believe now.
The positive side of the pandemic keeping me at home is that I have been playing more tennis (it's a bit safer to play during a pandemic than volleyball because you only need one other person!) and I came back to my childhood hobby of playing classical piano. The piano I play on today is the one that I inherited from my grandmother, who encouraged her 12 grandchildren to play. I was the only one who continued to play, so I rescued the piano for her!