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Cancer, Patient Care

Asking the hardest questions: Talking with doctors while terminally ill

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Jessica Rice, who was diagnosed with terminal lung cancer at the age of 30.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

What I’m discussing with these doctors is no picnic. While there’s a sprinkling of terminally ill 30-somethings out there, we’re not a common sight in most oncology offices.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The pill was successful for three months before two things happened: toxicity set in, and my cancer grew resistant. Next, I tried two different chemo cocktails; both failed. I joined the LDK378 trial in November 2012 and had an excellent response. Unfortunately I experienced very painful side effects which led to dose reductions below protocol. I was likely getting booted from the trial and taking a break when I had a seizure this past June.

My MRI showed five brain tumors, along with small lesions I affectionately termed “brain lint.” After two CyberKnife sessions, a few tumors shrank, a couple grew, and five more sprouted from that innocent looking brain lint. It was time for whole brain radiation.

Through all this I’ve worked with more than a half-dozen doctors and surgeons. Some have impressed me, a couple seemed lacking in one area or another, and one even managed to capture my heart. Regardless, I’ve unintentionally made all of them uncomfortable at one time or another.

It could be my tough questions.

I consider myself a down-to-earth, logical creature; looking at the facts and hearing the truth is strangely comforting to me. This is why I recently asked, “What will dying be like if it’s the brain tumors that kill me? Will it be sudden, like a seizure with an uncontrollable brain bleed?” I had asked this question long ago in relation to lung cancer, but it now seems more likely that the brain tumors will lead to my demise.

The chemistry I have with my primary oncologist is spot-on, and though my questions may still make him uneasy, he has adapted well. For this one, he started, “I can’t believe I’m going to say this…” and then answered every single follow-up question I had. Sadly, most cancer deaths are drawn out and painful, and I don’t think most people are prepared to hear the details. I wanted to know, though, and my doctor didn’t spare me.

I also think it’s sometimes not what I ask that can rattle physicians – but how. I’m very direct, and perhaps I don’t get as emotional during appointments as others expect. This led to a recent awkward encounter where a doctor literally stopped and stared at me in an odd moment of silence. I quickly wrapped up the visit, but I could tell he was disturbed by my demeanor. Maybe he didn’t think I cried enough. Or perhaps I seemed too resigned to what was happening to me.

Let’s face it – what I’m discussing with these doctors is no picnic. While there’s a sprinkling of terminally ill 30-somethings out there, we’re not a common sight in most oncology offices. And my presence alone might make some uncomfortable.

So, which of my three theories is correct? Is my directness off-putting? Does my logical approach confuse doctors who are expecting an emotional young woman? Or is it that my presence alone makes them sad? It could be all of those things, or a combination for some, but it may also be that even the most seasoned professionals hate facing the ugliest truths about cancer.

We all want to believe our doctors are stronger and better prepared for our fate than we are, but that’s just not the case. As patients we must seek out the physician that can not only listen – but also answer with as much honesty as we seek.

Jessica Rice was diagnosed with stage 4 metastatic lung cancer in November 2011. After a seizure in June 2013, she learned that the cancer had spread to her brain. Now she is determined to accomplish the priorities on her ‘Frog List’ and takes each day as it comes. Jessica chronicles her journey at http://stageiv.wordpress.com and may be followed on Twitter: @stage4blog.

7 Responses to “ Asking the hardest questions: Talking with doctors while terminally ill ”

  1. Andrea Borondy Kitts Says:

    Jessica,
    I’m so glad your primary oncologists can speak to you frankly and directly. My husband died in April after an 18 month battle with lung cancer. I will forever be thankful for our oncologist. He answered every one of my husband’s questions very honestly. My husband, like you, wanted to know. I personally think we need better training of all medical professionals on how to discuss the hard questions and provide the facts to the patients. Most patients want to know and are able to deal with facts. Knowing the likely prognosis and time frame helps with decisions on treatment and helps the patient to focus the remaining time doing what’s important. Thank you for sharing your story.
    andrea

  2. Katherine Leon Says:

    You’ve pierced their armor with honesty and realism. I’m guessing any specialty of physician must create a veneer to personally endure the tough stuff. But I’m of the same ilk you are. What often is perceived as being “so negative!” is just honest reflection of reality.

    I very much appreciate you opening your heart to the world. You are effecting change, which not many can claim in this life!

  3. Carmen Gonzalez Says:

    Jessica,

    Your directness may throw off your doctors for the simple reason that you are an empowered patient without pretense. That’s a rarity. The power of your story makes me think that physicians would be better served with companion psychologists at their side to help them navigate the trickier episodes of their practice. Kudos to you for asking the tough questions.

    Carmen

  4. Carolyn Thomas Says:

    Thank you Jessica for such a compelling story – and its important lessons for all of us.

    I worked in hospice palliative care for many years, where our organization also offered courses to physicians, nurses and pharmacists. One of the most popular was a class we simply called: “How To Break Bad News” – a skill that even the most otherwise skilled doc may feel quite inept at. Many of the “students” in this class were surprised to learn that often the news they felt most distressed about discussing with patients was not necessarily the worst for those hearing it. An example I never forgot was a young woman whose doctor had been dreading sitting down with her and her family to break the news that she had brain cancer. “Oh, thank God!” the woman cried upon hearing the diagnosis. “I’d been so worried that I was losing my mind!”

    We just cannot make assumptions, no matter how well-meaning, about how the “ugly truths” you mention will be perceived by all concerned.

    Good luck to you on this journey, Jessica.

  5. rose Says:

    40 50 AND 60 YEAR OLDS HAVE DIFFICULTY ASKING THE RIGHT QUESTIONS SO THE DOCTOR CAN ANSWER HONESTLY. THE DOCTOR NEEDS TO USE THE WORDS: SURVIVAL VS CURE ,TEATMENT, OPTIONS, SIDE EFFECTS, LATE EFFECTS, METASTESIS, RECURRENCE, PROGNOSIS ,HOSPICE, END OF LIFE , LIVING WILL NEED TO BE PART OF AN ONGOING DIALOGUE WITH THE DOCTOR OR THE TEAM THAT INCLUDES NURSES AND SOCIAL WORKERS AND CASE MANAGERS AND THE PATIENT AND THE FAMILY.

  6. Anne Marie Cerato Says:

    Jessica,

    I am also an ALK+ adeno LCC patient diagnosed at 30 (April 2009) I would love to touch base with you if or when you like. We have a lot in common and seem to be a rare breed. Thank you for writing this, it’s raw and honest and frankly long overdue. Wishing you all the best.

  7. Jessica Rice Says:

    Thank you all for your comments so far! If you have other questions, you may email me at stageiv at live dot com.

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