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Speak Up: The Moment that Changed How I Talk to My Patients

Pemmaraju, Naveen MD

doi: 10.1097/01.COT.0000390570.77866.87

As an oncology fellow, the clinic I most look forward to every week is my leukemia clinic. However, I should also admit that the clinic I cringe going to the most every week is the very same leukemia clinic.

The truth is, even though I have developed a strong affinity for the hematologic malignancies and plan on devoting my professional life to the pursuit of the eradication of these diseases, I still have to get mentally prepared each week before I walk into that clinic, given the degree of pathos and tales of overwhelming disease and heartbreak among some of our sickest patients.

A few months ago, I was asked to evaluate Mr. M, a patient with newly diagnosed chronic myeloid leukemia (CML). This is a patient interaction I was well adept at handling; I have seen many dozens of CML patients over the past few years. With the introduction of imatinib and subsequently, the second-generation tyrosine kinase inhibitors, this disease has been revolutionized over the past decade from one that was generally fatal within five years of diagnosis to now being one of the most highly treatable of all cancers. What I was not prepared for, however, was Mr. M's young age. He was only 21 years old.

I hadn't yet seen an adult leukemia patient this young. The median age for CML is around 67. It affects approximately 5,000 patients a year in the United States, with only a small fraction of these patients age 21 or younger. It was just so striking to see this robust young man—three times younger than the median age of the typical patient with CML, nervously awaiting our first encounter, waiting to be evaluated in the same clinic space that is routinely packed with elderly, sometimes frail, patients with a plethora of co-morbid conditions.

When I walked into the room, the frigid silence, mended together by Mr. M's fear and anxiety, was palpable. The patient was accompanied by his 20-year old wife. The newlyweds were so young and so lovely together that it was impossible to fathom that we were in a leukemia clinic about to discuss chemotherapy options.

Mr. M's initial greeting to me was, “Hello, Doctor, thank you so much for seeing us, sir.” I reflexively responded, “No problem, and please don't call me sir.” Suddenly I felt old—I've never had that feeling in our leukemia clinic before! I am not that much older than he is, I silently comforted myself. But, indeed I was more than a full decade older.

NAVEEN PEMMARAJU, MD, is a Fellow in Hematology and Oncology at the University of Texas MD Anderson Cancer Center in Houston

NAVEEN PEMMARAJU, MD, is a Fellow in Hematology and Oncology at the University of Texas MD Anderson Cancer Center in Houston

As I began interviewing this young couple, I learned that they had traveled to our center to inquire about the possibility of being enrolled onto a protocol with one of the second-generation tyrosine kinase inhibitors. I was prepared to discuss several options, including imatinib, or if he was indeed interested, ask him about one of our ongoing clinical trials. I had my speech ready to be delivered on our great successes and amazing outcomes with modern CML treatment.

But that's not the exciting discussion my patient had in mind. What he was thinking about left me and the health care team utterly unprepared.

Mr. M was actually contemplating not taking our “miracle” treatment. Yes, he said, he understood that these were just daily oral pills. Yes, he got it that this was not the traditional intravenous-make-your-hair-fall-out chemotherapy of yesteryear. But he was adamant that for now he just wanted to think about it and talk it over with his family.

Respecting his wishes, I gave him time to talk things over. I could tell he had quite a bit on his mind, and so we bid each other goodbye and planned a very close follow-up within a week to re-evaluate his decision.

When he returned to the clinic, the mood was not so pleasant. He and his wife had clearly been fiercely debating the issue. “What's the verdict?” I asked as I walked into the room. The answer is no, he said, he was not yet ready to start treatment.

Then, several repeat visits later, it was becoming clear that he was going to refuse therapy all together. At the fourth visit, though, Mr. M's wife spoke up: “We need to talk,” she said to me.

I pride myself on my history-taking ability, especially my social history-taking. However, one thing I failed to uncover in our visits was all of the life stressors my patient had before him. I found out that Mr. M's reluctance in taking our second-generation TKIs was actually due to concerns over his second generation.

The couple had been planning for some time earlier to start a family. Mr. M had noticed, though, that he was feeling more fatigued than usual and was newly needing to take naps to get through his day. His daily exercise workouts were becoming shorter, and shorter until he eventually stopped going at all because he was feeling tired all the time. And then within a week of seeking medical care, he had undergone a battery of tests, culminating with a bone marrow biopsy revealing the leukemia diagnosis.

His wife relayed to me that their hesitation about treatment was secondary to the fear of never being able to have children. Mr. M and his wife had very thoroughly read over the entire chemotherapy consent packet given to them at our first meeting. They dutifully read every page, line by line. They informed me that they had read the customary line about precautions for childbearing and risks of getting pregnant while on chemotherapy. Their silent worry about starting a chemotherapy that was in the form of a pill that had to be taken every day for the rest of the patient's life, on a clinical protocol, was that it would permanently ruin their chances of ever having children. They were frightened about this unexpected prospect, and didn't quite know how to bring it up to me and our team.

This is the moment that changed how I talk to my cancer patients, especially young patients. Focusing on only the cancer process itself, as oncologists, we often forget that sometimes, the cancer is not always the most pressing or even the most important issue to the patient at that moment. I realized that no matter how well equipped we think our clinics are, no matter how well trained we are from our textbook knowledge of malignancy or cancer biology, that nothing in the world can prepare you for sitting down with a 21-year-old and his wife facing some of life's most important issues together.

With the assistance of the amazing support staff in our clinic, by the end of the visit, after we had uncovered the patient's true worries, we provided Mr. M and his wife with the contact information for several members of the reproductive team. We discussed the possibility of sperm banking if this was something the patient was interested in, prior to starting chemotherapy, given the lack of conclusive data about this type of oral chemotherapy and childbearing with regards to male reproductive health.

Mr. M and his wife were relieved and thankful, as they did not know how to bring this issue up and weren't aware that options such as sperm banking in this situation were possible and utilized frequently for young cancer patients prior to starting chemotherapy.

After he consulted with the reproductive support clinic and arranged for sperm banking, Mr. M was eager and ready to start chemotherapy and start thinking about spending time with his wife and their planned future family. He was not going to let CML get in the way of that or any other dream.

© 2010 Lippincott Williams & Wilkins, Inc.
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