I Was Unprepared for a Diagnosis of Mantle Cell Lymphoma

No matter how familiar you are with the biology, sociology, and psychology of the disease, getting a cancer diagnosis provides a unique perspective on the fragility of life.

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The irony is not missed on me. In August 2022, 2 months before I was to start my tenure as President of the Union for International Cancer Control (UICC), I was diagnosed with mantle cell lymphoma. My entire career over the past 30 years has been in the pursuit of improving global cancer control and survival outcomes for patients with cancer, but none of that work prepared me to hear the words “You have cancer.”

I had been feeling fatigued for several weeks before the diagnosis, but thought it was from the lingering remnants of a bout with COVID-19. That August, as I was struggling to close the top button on my shirt collar, my first thought was I had put on weight, but then I could see that the lymph nodes on the left side of my neck were swollen, and it dawned on me that something was wrong.

I got the news that I had this rare, aggressive type of non-Hodgkin lymphoma while perusing the shelves of my local hardware store. My hematologist called my cell phone and asked if we could talk about the results from the laboratory tests taken just days before. After giving me the diagnosis, he said he was planning an aggressive course of treatment, including an intensive chemotherapy regimen, followed by an autologous stem cell transplant. But still there were choices to make.

“What if I don’t have treatment?” I asked. “With the disease progression you have, without treatment, you will be dead in 8 weeks,” he said.

Through my work at the UICC over the next 2 years, I hope to close the gap in access to care that exists for many patients with cancer and improve survival rates.
— Jeff Dunn, PhD, AO

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Surrendering to Cancer

There is a sense of gravity and darkness that accompanies a life-threatening cancer diagnosis, and I just had to accept the reality of the situation. No matter how much you research cancer, or talk to patients about it, or how familiar you are with the biology, sociology, and psychology of the disease, getting a cancer diagnosis provides a unique perspective on the fragility of life, and it was quite a thing to contemplate.

We hear patients talk about the loss of control they feel after a cancer diagnosis and the need to surrender to the medical system, and it is so true. You must surrender into the system and the uncertainties ahead to survive, and all your perfect plans for the future just go out the window.

Unlike many other patients when they received a cancer diagnosis, I didn’t look up information about mantle cell lymphoma and its survival rates. I just decided to put my faith in my oncology team and the science behind the most effective treatment and let whatever was going to happen, happen.

Celebrating Two Birthdays

Within days of receiving the diagnosis, I was in the hospital to begin the arduous preparation for my transplant. On December 6, 2022, I had an autologous stem cell transplant, which has put me in complete remission with no evidence of disease, and I’m on rituximab maintenance therapy for the next 3 years. I consider December 6 to be my second birthday, my first is August 31, and I’m planning on celebrating both birthdays this year.

Advocating for Universal Health Care

Although getting a cancer diagnosis just as I was about to start my role as President of the UICC delayed my transition into the job, it has emboldened my resolve to make sure the next 2 years are meaningful and productive for me, the UICC, and the millions of survivors we serve around the world. My story is among the nearly 20 million other stories of people who will be affected by cancer globally this year.1 I want to make a difference for them. Through my work at the UICC over the next 2 years, I hope to close the gap in access to care that exists for many patients with cancer and improve survival rates, especially for those living in low- and middle-income countries, where as many as 70% of cancer deaths occur.2

I am extremely fortunate. I live in a country with an advanced health-care system underpinned by population-wide access to best-practice oncology care, guided by the latest evidence. Part of my mission over these next 2 years is to get the global community closer to universal health coverage, so all patients have access to high-quality cancer care, unimpeded by access or affordability issues.

In 2019, the United Nations (UN) held its first High-Level Meeting on Universal Health Coverage, which adopted a political declaration for the development and implementation of national universal health coverage plans through the engagement of civil society organizations and other stakeholders by 2030. In September, the UN will hold its second High-Level Meeting on Universal Health Coverage to assess the progress that has been made in global cancer control initiatives, including those involving the elimination of cervical cancer and improved outcomes in breast and childhood cancers.

Until we identify universal health coverage as a goal we all must pursue, we will not succeed in increasing cancer survival rates. Being diagnosed with cancer has provided me with the additional fuel and energy to push even harder to get out this message and to ensure that more patients with cancer get the high-quality care they need to survive, regardless of their zip code.

Appreciating Life

On a personal note, I admit that nearly 9 months after my diagnosis, I’m still working through the impact of cancer on my life. I still am easily fatigued and need to take frequent rest breaks. I also must be careful about being out in large crowds because of my compromised immune system.

Cancer has also made me more circumspect about my life in general. When you are faced with a life-threatening disease, you don’t want to waste time, and I’m more careful now about how I choose to spend my time and who I spend it with. It’s more important to me now that I not only take better care of myself, but better care of the people around me as well, especially my wife and children.

As I write this, I’m feeling optimistic that I’ll be around for a long time, but that hopefulness is a step-by-step process that changes day-by-day. I’m learning what it means to be a cancer survivor, incorporating all the usual uncertainties of life with the uncertainties of this disease, and appreciating it all. 

Dr. Dunn is President of the Union for International Cancer Control (UICC); Chief of Mission and Head of Research at the Prostate Cancer Foundation of Australia; Professor of Social and Behavioral Science; and Chair of Cancer Survivorship at the University of Southern Queensland. He lives in Brisbane City, Queensland, Australia.


1. Sung H, Ferlay J, Siegel RL, et al: Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 71:209-249, 2021.

2. List JM, O’Connor JM: How should low- and middle-income countries motivate equity in cancer prevention and control? AMA J Ethics 22:E147-E155, 2020.

Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.