Chemo or Lourdes? Welcome to Cancerland

Michael Carbine

Dr. Peterson, the radiation oncologist, gets right to the point.

“The medical center’s tumor board has concluded that your cancer is inoperable, incurable and untreatable,” he says flatly. “Any chemotherapy or radiation treatments would be palliative in nature.”

He begins explaining the reasons behind the board’s verdict, but everything he’s saying washes out. My mind stopped working as soon as I heard the words “incurable” and “palliative.” I am sliding into shock.

Dr. Peterson pauses.

I thought you knew this,” he says hesitantly.

“Well, two weeks ago, I got a much better prognosis from Dr. Lowe, who’s a cancer surgeon,” I say. “He and I discussed my having surgery.”

Clearly unsure of what to say, Dr. Peterson quickly returns to the board’s findings, but I interrupt him.

“What would happen if I choose to decline treatment?”

“There’s no reason to be afraid of chemotherapy and radiation,” he begins.

“I’m not afraid,” I interrupt. “My main interest is quality of life, not longevity–“

“If you do nothing, you’ll be dying, and there will be no quality of life,” he cuts in quickly. “The sooner we begin chemo and radiation, the better off you’ll be.”

We continue to talk past each other, and the conversation deteriorates until we reach a dead end.

“I’m sorry,” he says finally. “I’m pretty young”–he looks to be in his thirties–“and I don’t have that much experience in dealing with messy situations like this.” His voice and face betray his discomfort.

He takes me across the hall to meet with Dr. Richards, the medical oncologist who will be coordinating my care.

On Dr. Richards’ desk I see a treatment consent form already filled out and awaiting my signature.

Without any civilities or inquiries into who I might be, how what’s happening to me is affecting me emotionally or how my values and preferences might influence my decisions, Dr. Richards unleashes a torrent of numbers about my particular kind of cancer–its prevalence (rare), nature (unusual) and existing research (there’s little in the literature). The data, expressed in a language I cannot yet understand, further numbs my brain.

Finally, he comes to the point: he plans to subject me to the most aggressive and brutal course of chemotherapy possible.

“There are possible side effects,” he cautions, “but they’re worth it, because I’m going for the cure.”

“But the tumor board says that the cancer is incurable,” I say.

“Well, it’s true…a cure would be nothing short of a miracle,” he admits, his tone businesslike. Without missing a beat, he continues: “I’ll be using three chemotherapeutic agents, and the regimen will run for two months; you’ll have a mix of visits to the infusion center and use of a home-infusion pump. That should shrink the tumor and buy you some time–“

For the second time in one day, I interrupt a doctor.

“My overriding concern is quality of life rather than longevity,” I say.

He regards me impassively. I can tell that he is losing interest.

“What would happen if I do nothing?” I ask.

He recommends exploring hospice care.

“Would chemo enhance the effectiveness of the treatments the radiation oncologist is proposing?” I ask.

“Yes,” he answers, but reminds me that the radiation oncologist, like himself, is recommending the most aggressive treatment in hopes of a miracle.

“Then a less brutal regimen would be to go to Lourdes,” I say facetiously.

To my astonishment, he nods. “A trip to Lourdes would be a better use of your money.”

He looks at his watch. “We can’t spend all day on this,” he announces impatiently.

In silence he prints out a brief summary of the chemotherapy options.

“Look it over, and call me when you’ve decided on one,” he says.

He stands. The meeting is over.

Disoriented, confused and enmeshed in a web of disbelief, I leave. Only later, when anger begins to temper the shock, do all the things I could and should have said come to me. I write them down, but put the list aside until I can find another oncology team at a different center.

After some searching, I select a new team. And, in truth, I eventually go with the chemo and radiation regimen recommended by Drs. Peterson and Richards. But the new team helps to make the decision an entirely different experience for me.

From the first visit on, they listen closely and respond to my concerns and fears. They solicit my feedback on their recommendations and spend time explaining my options. They too talk about numbers and data and algorithms, but they also listen to my story, and I can tell by their questions and comments that they value what I’m saying.

I know that they are highly competent medical professionals. But the way in which they relate to me–as one human being to another–convinces me that they also understand the personal side of medicine, and that they will bring to my care not only the aim of curing but also the art of healing.

The trip to Lourdes can wait.

About the author:

Michael Carbine is a retired healthcare business writer and publishing executive. Last October, at age seventy-four, he was diagnosed with stage 3 squamous-cell carcinoma of the sinus cavities. The tumor had already caused the loss of sight in his right eye and was beginning to penetrate his brain. “Never having been seriously ill before, the diagnosis and prognosis shook me to my foundation, and my year-long excursion into the world of the cancer patient opened my eyes to the way we often dehumanize the patient experience at a time when we most need empathy and caring from our physicians.” On January 1, 2014, Michael began writing about his experiences with cancer and with the healthcare system, and his struggle with the existential and spiritual distress that arose from the experience, in a CaringBridge.org journal entitled Travels With Felix (the name he gave his tumor). “Regarding the untreatable/incurable diagnosis, several months ago I had my PET scan to see how well the chemo and radiation had worked, and to everyone’s amazement (including mine), there is now no trace of the cancer. Talk about a miracle.”

Story editor:

Diane Guernsey

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Comments

14 thoughts on “Chemo or Lourdes? Welcome to Cancerland”

  1. I love this story, especially the comparison to Lourdes. And it seems to me, very possible that Divine Mystery has heard the options, and on behalf of your willingness to publish the miraculous response, has intervened in a lovely way! I cannot believe that there are physicians who act and talk like the first ones you saw, but it is obvious from so many stories being published that it is still the case. “Dehumanizing” in actually polite, for what this does to people. I am so glad your second team actually treated you like a person!

  2. Michael Eliastam MD

    As I read his description in all its horror and disgust, I knew it was true. I have heard colleagues talk exactly like that, and these colleagues are often the teachers of our students!
    I will post this to my student forum, though I wish more of them actually read it.
    Once again, PULSE hits me where it hurts!

  3. As a recent, fellow cancer survivor, Stage 3 throat, I congratulate you on your outcome. Whoohooo. I too was subjected to the same inhumane and insensitive “care” that you experienced. It is amazing and sad to me that so many medical professionals seem to have forgotten Hippocrates’ definition of medicine. “Treat often. Cure sometimes. COMFORT always.” To truly cure a patients’ body it is imperative for those in whom we place our lives, that they attend to both our bodies and souls. Since my cancer experience I have dedicated my life to speaking to those same medical professionals to share my story in the hope that I can inspire and reconnect them to the fullness of medical treatment and care that we so desperately crave in times of need. Thank you for re-inspiring me.

  4. Sterling Haynes

    Thank you Michael for writing this fabulous essay and letting us accompany you on your “Travels with Felix.”

  5. Being truly present to a person and listening deeply from the heart to another person and his or her story are perhaps the greatest gifts that one can bestow to another human being. To be truly heard is likewise perhaps the most profound gift one can receive from another person. The listener and storyteller are both real persons to each other. If this is not part of “curing,” it is certainly at least part of “healing.” Thank you for this story, Michael.

  6. What a wonderful story. Great to show how medical providers can discount the patient. I will use this with my work as a hospice volunteer. Thank you for sharing your experiences and happy ending.

  7. Good for you Michael, and good for your second team. I hope 100 people know who your first physicians are and send them copies of your articles. Shame on them. Shame on them for coming to think of their patients as a collection of molecules to treat and not souls in distress.
    I’ve had cancer twice and thank heaven most of my physicians fall into your second group.
    Good luck, always.

  8. Thank you for sharing your story. If you haven’t already done so, Read Atul Gawande’s new book. You will see your experience mirrored in the many stories he relates regarding cancer care. Wishing you good health and thank you for reminding us of how important the patient is in the medical process.

  9. Margaret Fleming

    What a whirlwind! Michael can certainly write an adventure story– a patient’s adventure story for all of us who are starting to believe we have no more miracles ahead. And isn’t it possible that the caring of the second group of doctors was healing?
    Thank you.

  10. Amazing story, amazing cruelty of talking to a patient (the first team), extraordinary alert to anyone who pratice medicine.
    M.L, Lisboa

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