The ASCO Post is pleased to reproduce installments of the “Art of Oncology” as published previously in the Journal of Clinical Oncology (JCO). For information on how you can submit your own essay for consideration in JCO’s Art of Oncology, visit http://jco.ascopubs.org/site/ifc/determine-my-article-type.xhtml#art-of-oncology
Next to me sounds the buzzing of my Lympha Press machine, which substitutes for the constant visits of the physiotherapist who performs the lymph drainage. This gives me more freedom, and we have more privacy at home. I can use the machine whenever I need it, and my 5-year-old daughter, Christina, can be around me without problems.
Today, the little one is at school. This gives me time to work a bit, but as I lie on the bed like a large insect in Michelin tire–like blow-up pants, with several liters of ascites in my abdomen, it is difficult to use the laptop. Thus, I decide to get up to speed with reading my journals, which I have not done for months.
As an oncologist, I read Journal of Clinical Oncology (JCO) with feelings of pride and empathy. I am proud of my own articles in JCO, but during the past few months, I have not been able to touch it. Why? If you change sides of the bed—moving from physician to patient—you begin to change your style of reading. I realized today that I was more interested in the Art of Oncology articles than in the Original Report articles. I realized that except for stories of pediatric oncologists who lose children to cancer, few if any of the Art of Oncology articles seemed to tell the story of an oncologist with cancer. Does this mean it is unprofessional to get cancer? Or that it is unprofessional to write about that experience?
I do not miss the stress caused by the time pressure of my work. I miss my patients, the teaching, and the research, but all this is easily made up for by a single smile from my daughter.— Christiane A. Voit, MD, PhD
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Through the Eyes of a Patient
Original Reports always seem to follow the same template: an Introduction tells why a particular cancer is so horrible or that there is no effective treatment for a specific stage of that cancer. In the Results section, the focus is usually on rates of response and relapse-free survival, all of which are appropriate to read and write about when seen through the eyes of an oncologist. However, these topics are seen differently through the eyes of a patient: What does an increase in relapse-free survival from 1.5 to 5.5 months mean if overall survival is the same in the end?
When I looked at my own malignant lymph node on the screen of my own high-end ultrasound machine on a rainy day in October 2012, I immediately assumed a certain professional detachment. I saw that all the criteria I had developed for determining whether lymph nodes are malignant could be applied to my own. The only logical next step was to perform an ultrasound-guided fine-needle aspiration on myself.
To prevent any colleagues from finding my personal pictures in the ultrasound machine, I gave myself the fictive name of a character from a German children’s book I had always loved. I saved the pictures and film clips because they were exemplary, and I would be able to use them for my next presentations and courses. Unfortunately, the cytology revealed undifferentiated cancer.
From that point until the time of this writing, I have wrestled with a number of issues: Why did the doctors I visited 6 months before my self-diagnosis not pick up on my complaints of abdominal pain, fatigue, and a yellow complexion? Why did they not want to do genetic testing when I asked them to do so years ago, because seven relatives (all maternal side) had developed breast cancer? I was refused because my mother and sister did not have breast or ovarian cancer. Now, in the final stage of my ovarian cancer, I have made peace with all of this.
I visited Christiane for the last time on Monday, May 18, 2015. She was a dermatologist, a melanoma and lymph node ultrasound expert, and a patient with ovarian cancer. She published 55 peer-reviewed articles, including four in JCO, and presented her work during oral presentations at annual meetings of ASCO and the European Cancer Organisation. Moreover, she published five articles during her illness and treatments. One of her last wishes was to publish a final article in JCO. Because of her deterioration, she could not manage to revise this article and submit it; therefore, she asked me to complete it for her. The manuscript has been shortened significantly, but the message has remained unchanged.
My dear friend and co-promotor of my PhD thesis, Christiane, died on May 25, 2015. We publish this article posthumously to pay our respects to her achievements and her own battle with cancer. Our friend will be sorely missed. Our thoughts are with her husband, children, family, and friends. ■
—Alexander van Akkooi, MD, PhD
Netherlands Cancer Institute, Amsterdam
After 12 hours of massive debulking surgery, weeks of parenteral nutrition on the intensive care unit as a result of vomiting, and courses of chemotherapy, I had again a small glimmer of hope. The first results of several anti–programmed cell death protein 1 (PD-1) and anti–programmed cell death ligand 1 (PD-L1) treatments for different types of cancer were being presented and published, and they seemed encouraging. Perhaps as a result of my professional background, I was aware of these developments and was able to gain access to a clinical trial with anti–PD-1 in Paris with the help of my Dutch mentor who nowadays resides there. My tumor even expressed PD-L1, and I was allowed to be included in the study as one of the last patients. Despite all my efforts, my disease progressed on treatment.
A Happy Time With Family
It might seem contradictory, but as I write this, it is now a happy time. My eldest two children, Michael and Lukas (26 and 21 years old), have been catapulted into adult roles as a result of my cancer diagnosis. They patiently wait with me at the doctor’s office, make fun of me when things get too serious, and give me good advice, such as when I should cut my too-long hair. We are even able to talk about serious topics such as last will, funeral, and expectations: mine for them and theirs for me. Our relationship is stronger than ever. Christina now has the privilege, as her brothers never did, of not having a mother who has to work constantly but can spend mornings in bed with her, giggling, cuddling, and listening to the birds.
Not that I would promote getting cancer to improve your relationships with your children, but there is something oncologists need to keep in mind: All of our patients have mothers and fathers, many have children, and all of them are going through this very tough, emotional experience that nobody ever really wants to deal with. Remember this.
Oncologists have all dealt with the time pressures caused by deadlines for abstracts and presentations, the sheer volume of clinical work, and countless other pressures. However, for patients who may be facing their own mortality, time with their treating oncologist is critically important: They need it to understand their disease and to acknowledge their thoughts or fears.
I do not miss the stress caused by the time pressure of my work. I miss my patients, the teaching, and the research, but all this is easily made up for by a single smile from my daughter. However, when she asks me when I will die and asks that I please not die, these are the moments when I feel desperate. How should I respond? I think of a film that impressed me greatly entitled The Best Exotic Marigold Hotel. For me, the essence of this movie is contained in this line: “Everything will be all right in the end. If it is not all right, it is not the end.” Everything happens for a reason. ■