by Jessica Sultaire, Living with Cancer
Up until my early twenties, the only doctors I really knew were my pediatrician, dentist, and OB-GYN. The doctor/patient relationship was cordial, routine, and a blip on the radar in the grand scheme of my life. I mean, doctors are people who give you a z-pack and send you on your way, right?
The medical professionals in my life were those people that I saw every 6-12 months as needed. I went to them because my parents went to them and did not even question if they were the right care providers for me. I just assumed they had my best interests at heart and upon leaving their offices my mind turned to other more pressing college-kid matters like finishing my research paper or who would steal Bret Michael’s heart in season two of Rock of Love.
When I turned twenty-four my world imploded upon itself with a stage 3C ovarian cancer diagnosis. I was quickly swept into a life of hospitals, doctors, nurses, and every medical professional in between. It is important to mention that prior to the diagnosis a Harvard-educated gastroenterologist misdiagnosed me. He operated with blinders on. I presented with an abnormally large distended belly, feeling full quickly, having diarrhea, constipation, etc. After a colonoscopy he determined I was fine and “it was just gas”. If he had thought outside of his specialty for a second, even if he knew nothing about the signs and symptoms of ovarian cancer he may have been more inclined to investigate further. Instead, he came across as arrogant and dismissive. Just days after speaking with the dismissive GI a local hospital discovers that my belly is full of three liters of fluid, not gas, produced by several tumors in the abdominal cavity. After having that experience my naïve bubble of “trust me I’m a doctor” had burst.
I won’t lie to you and pretend that I was totally discerning and intentional in doctor selection after being let down by this gastroenterologist. I was young and scared and when the consulting oncologist at the local hospital referred me to Yale New Haven Hospital for surgery and treatment my parents and I listened. The GYN-oncologist was highly regarded and the hospital had a great reputation for cancer care so we began the journey there and luckily it lived up to expectations. Even when I felt ready to move back to where I live and work in Providence, Rhode Island, it was pure luck that Women and Infant’s hospital paired me with my current GYN-oncologist, Dr. Robison. I would later find out that she would be my doctor, advocate, friend, and biggest cheerleader.
Since beginning this cancer journey almost 3 ½ years ago, I have had a comprehensive experience at Women and Infant’s hospital in which I have felt respected and supported by a team of people that go above and beyond their job descriptions on a daily basis. My oncologist doesn’t have to call me to discuss my CT scan the day I have it but she does because she understands the turmoil that is waiting for test results over the weekend. My social worker didn’t have to come to my home to talk me through a particularly rough day when I was too ill to make it to her office but she did because it was important to her that we addressed my emotional health in a timely manner. My nurse navigator didn’t have to ride the train with me into Boston and hold my hand through a consult at another hospital for a drug trial ON HER DAY OFF but she did because she is a stellar and saint-like human being. I could go on and on for days with countless examples of how everyone from receptionists to third-shift nurses have made a meaningful impact on my care.
I understand that not everyone will have such a high touch experience, trust me; I know how rare and unique this is. Through the years I have been faced with several surgeries, medications, and chemotherapy treatments that make me constantly have to evaluate my situation to ensure that I am setting myself up for the best possible outcome. When you are considering your medical team, seeking a second opinion, or searching for supplemental resources I would encourage you to ask yourself the following questions:
- Does this person provide for me clear and concise information about my options?
- Does this person take the time to dissect current trends in research and relay this information in a relatable manner?
- Is this person an effective communicator with both my loved ones and myself?
- Does this person respond to questions or concerns in a time sensitive manner?
- Does this person empower me to make informed decisions about my care and wellbeing?
- Does this person treat me with respect and display warmth and empathy?
- Does this person value integrative care? Do they help to connect you with in-house resources such as social work, nutrition, sexual health clinic, etc?
- Does this person seek to understand how a “good quality of life” is defined by you?
As you get to know your medical team, make notes to yourself about communication style, decision-making, personality, and openness to other resources. If your answers are consistently “no” or “not really” to the questions above, it may be time to communicate your needs openly and honestly to your team or consider other care providers that meet your needs. You are an individual with a beautiful life that extends far beyond cancer. While you are in the thick of it, you need a team of caring individuals that treat you as that person.
I am a 28 year old from Providence, RI being treated for stage 3C epithelial ovarian cancer. I have been in treatment since Thanksgiving of 2012 and I am committed to fighting this disease while maintaining a fulfilling high quality life. I continue to work in higher education as an undergraduate advisor at Bryant University. In my spare time I maintain a blog called: The Cancer Chronicles: My Account of the Bold, Bald, Battle. What started as a way of updating friends and family evolved into a passion for writing and sharing experiences with other young people facing chronic illness. I also volunteer for The Izzy Foundation through facilitating activities in The Izzy Room at Hasbro Children’s Hospital. Outside of the cancer world I love to travel, read, and experience as much delicious food as my appetite will allow!