To the Editor:
Re “When Your Terminal Cancer Becomes a Chronic Illness,” by Daniela Lamas (Opinion guest essay, nytimes.com, May 10):
Dr. Lamas highlights an important gap in our understanding of how to manage a cancer diagnosis when treatment prolongs life for an uncertain amount of time. As a cancer patient living with metastatic sarcoma, I know that there is no current cure for me. But there are several treatments that can prolong my life.
Based on my family history, I was planning my life with the assumption that I would live to 90. Now how do I plan? What if I live in the moment but survive many years and deplete all my savings? What if I continue to work hard as if I will survive many years and die next year?
Four years into this diagnosis, it is a constant struggle in which I vacillate between booking that expensive dream trip to Europe one day and panicking on a call with my financial adviser about my retirement accounts the next day.
I hope that articles such as this prompt researchers smarter than I am to find better strategies for living well and wisely when the treatment is lifelong and the amount of time left is unknown.
John Coburn Atlanta
To the Editor:
I am living with an incurable, terminal but treatable (for now) cancer. I was diagnosed with multiple myeloma in 2022 at the age of 37. My children were ages 2, 4 and 8. My cancer is stagnant, for now.
I spent the first two years after diagnosis fighting for my life. Retreating to a dark tunnel to become whoever I needed to be to survive. As I slowly left that tunnel, I discovered I was a new person.
Of course I was. I had almost died, and I had ahead of me a lifetime of wrapping my mind around the reality that my cancer would always be there, a sleeping giant that would awaken at any moment to do its worst.
I was so excited to see an article try to put this experience into words — but upon reading it, I found it lacking the most profound parts of this journey. Yes, the intensity, grief, pain and fear are discussed, but what is missing is the unexpected flip side — the beauty, gratitude, perspective and presence that can be found only in the midst of this kind of uncertainty.
Since diagnosis, I have had moments with my children when time stops. Their tiny hands and beautiful smiles send an almost painful shock into my chest. That shock brings me a moment of love, stillness, clarity and presence that I don’t think many other people get to experience in life. The depth of this transcendent beauty is matched only by the depth of the pain and fear that live within me, in perpetuity, as I wait for my inevitable relapse.
Traci Rounds Lake Elmo, Minn.
To the Editor:
Thank you, Dr. Daniela Lamas, for talking about this strange limbo land, of having a Stage 4 diagnosis but not actively dying (yet). I’ve been on treatments for metastatic breast cancer for five years. My main side effect is fatigue.
I’m 56 and stopped working last year, which was never the plan. I can’t imagine much of a future, particularly when I’m opening the latest email with my scan results. I’ve read enough research to know that breast cancer will mutate and find new ways to progress, and the treatments I’m on will stop working.
I’m so very grateful for my medical care. I’m grateful for the time to read new books, eat scones, see people I love. And yet I’m not grateful every single moment of every day, as others seem to expect me to be. I’m exhausted and sad sometimes. I don’t always dispense cancer wisdom like a wise Yoda.
The reality of a foreshortened future may seem like an imperative to seize every moment with vim and vigor, and yet I usually don’t have the energy. It is a gray, murky, uncertain period in my life, summed up well by the author as “no clear moment when a life can be declared resumed.” Thank you for acknowledging the gray.
Stephanie Boyden San Francisco
To the Editor:
As the kids say, “I feel seen” by Dr. Daniela Lamas’s piece about the evolving experience of living with Stage 4 cancer. I was diagnosed with metastatic kidney cancer at age 33 with a baby at home and a just-blossoming career as an academic psychiatrist.
At the time, the diagnosis seemed to engulf my entire existence. Eight years later, I’ve changed along with my prognosis, becoming more familiar with middle age and the possibility of a longer life.
I still struggle through the parallel lives of everyday minutiae and life-or-death existence. An unexpected challenge, though, is the call to shepherd others through the uncertainty of my long and winding and definitively treacherous road. People want to use words like “remission” or “fighting” when it comes to cancer, while the true experience for people like me is something so much more complicated.
I like to say that no matter what uncertainties lie ahead, we go forward. And that seems to do the trick, as we olds like to say.
Adam Stern Newton, Mass.
To the Editor:
Thank you for your article “When Your Terminal Cancer Becomes a Chronic Illness,” which brings awareness to the uncertainty that so many patients live with every day.
In many ways, all of us living with chronic illness exist in a gray zone — never fully knowing how our story will unfold. That understanding is one reason I transitioned after 25 years in emergency medicine into integrative cancer care.
I also write from the perspective of someone living gracefully with cancer myself. This unique lens as both physician and patient has shaped how I care for others. Rather than leaving patients feeling helpless, we focus on what can be controlled: nutrition, movement, stress management, sleep and circadian health, and evidence-informed personalized therapies.
Advances in precision medicine now allow us to use tumor biomarkers to create individualized recommendations, including lifestyle interventions, repurposed medications, supplements and other supportive therapies. Patients deserve to be informed, supported and empowered — not abandoned in uncertainty.
Cancer care should focus not only on treating disease, but also on helping patients actively cultivate health, resilience and meaning while living with it.
Jennifer Ron Libertyville, Ill.
The post Living With Cancer: Personal Stories appeared first on New York Times.
