The complicated existential dilemma of living with cancer

The complicated existential dilemma of living with cancerMaybe I should’ve noticed how she looked.  “She” was a new patient, Louise*, and she had been diagnosed with stage IV cervical cancer. Only in her 40s, the diagnosis had hit her extremely hard. At her first meeting, she wanted the “truth,” and I had told her what I felt to be most relevant — that her cancer had spread, that it was not curable, and someday it would probably kill her. However, she was not dying now, and we could certainly treat her cancer, which could help her thrive, keep the disease in check — and perhaps even place her into a remission. While a remission was not the same thing as cure, remission was a reasonable and realistic objective.

She had come back to clinic after our initial meeting with hair shorn and a new sense of mission as she exclaimed, “Let’s do this, I’m ready.” She decided to embark on chemotherapy and did well with her first three treatments, from which she experienced minimal side effects. Although she lost her hair, she took even that in stride–and discovered a passion for scarves along the way. “I may not go back to long hair; heck, I might stay with my Sinead O’Connor look!” We both laughed.

However, at her fourth visit, she was more reserved, almost sad. “I think it’s this weather; I always feel lousy when it rains continuously. And this cancer isn’t helping.”

“Well, on the positive side,” I had told her, “I am pretty optimistic that things are going well. I can’t feel your tumor anymore and your symptoms are gone, suggesting treatment is really working. I think that’s terrific news.”

She looked me in the eyes as I talked and when I finished, she replied, “Explain what you mean by optimistic?”

“I agree that treatment is working, and I am grateful for that. But, by optimistic, do you mean that I could be cured, or that I’m fine for now? Should I be less scared that I might die in a couple of years or can I go into remission and be fine until I’m 90, all because of this optimistic treatment regimen? I need you to explain to me exactly why you are optimistic.”

It is not often that questions of long-term outcomes arise during active treatment, especially when treatment is working. For an instance, I was confused about how to respond. Had I not been truthful with her? Had I unknowingly confused her with my talk of “optimism” and her “responding to therapy”? After all, our first conversation had been about how her metastatic disease was incurable and potentially fatal.

As an oncologist, I often ask my patients to live for today (in the words of Robin Williams’ character in Dead Poets Society, “carpe diem”). I’ve come to realize that my emphasis in “today” influences my assessments, evaluations, and how I communicate with my patients. When treatment works, I feel like I am doing something worthwhile — helping someone in the journey with cancer, and I am happy for them. When it is not, I adopt more emotional restraint as we think through prognosis, treatment, and endpoints together.

However, while this approach works for me, it may not work for some of my own patients, especially  those who find living with cancer a far more complicated existential dilemma — even more so in the context of advanced disease. As Louise helped me see, living for today might be good advice, but thoughts about the  future are never far away.

Ultimately, oncologists are here to treat cancer, including our continual assessments of treatments, their toxicity and whether or not they are helping. However, we can never forget the person living with cancer. Indeed, meeting the psychosocial needs of patients is part of a comprehensive treatment approach. Taking the time to explain what is happening now in light of what we anticipate for the future is important. I guess in the end, seeing the trees is just fine, but our patients never lose sight of the forest, which remains an ever present reality, and perhaps, far more important.

*Name and characteristics changed to preserve privacy.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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  • Suzi Q 38

    I am glad that she asked you to be more specific, doctor.
    The truth is that no one really knows, perhaps?
    If so, tell her.
    This way, she can enjoy each day and hour and do something profound with the rest of her life.

    • drdondizon

      Hi Suzi,

      Yes- you are right. It is not possible to be specific about how much time one has; doctors are not gods and as I tell my patients, “my crystal ball doesn’t work well.”

      Ultimately, I think it comes down to empathy. Although doctors can derive much comfort from admitting “I don’t know”, it remains quite a difficult thing to admit (and as I’ve seen, a hard thing for patients to hear). In addition, offering advice about “living for today” can ring quite hollow to some patients, especially when the future is so uncertain, like after a diagnosis of cancer.

      I guess ultimately, we are all trying to do the best we can. Our best requires honesty and perspective, which can really help doctors, clinicians, and patients stay on the proverbial same page.

      Best always, D

      • Suzi Q 38

        I guess everyone handles the cancer diagnosis differently.
        When my MIL was 61 she died of lung cancer with mets to the brain and in other parts of the body. She was gone in 3 months. During those months she fought hard, with chemo and radiation day after day.

        My BIL was 52 when he died of pancreatic cancer with mets all over his stomach, he lasted 2 months. He fought in a similar way as my MIL, even though their cancers were very different. He desperately wanted to live, so he endured the chemo and radiation. I remember a nurse’s aid asking me in Spanish (she knew I loved to practice my Spanish) “Why is he still going though all of this treatment? Just take him home.”

        If faced with a similar prognosis, I have decided that I may not do anything at all. With stage 4 cancer and mets…what can be done?

        This is why I would want to know. Not that anyone has a crystal ball, but there are educated and calculated guesses or predictions.

        If faced with this knowledge, I could do a lot in 3, 4, or 6 months. I could enjoy a few beaches or the moon at night, visit a few long lost friends and/or relatives, write to my adult children.

        In the end it is best if I can plan my “end” a bit.

        A good friend of mine who had lung cancer at age 36 had big plans for her “end”.

        She wanted to go to Disneyland, then have a big slumber party. We invited 16 of her friends and we had a great time.

        She also talked me into planning her funeral as difficult as that was to do ahead of time. We planned it, right down to the flowers, colors, music, and bible verses.

        I want to know how long I have left, so even though your crystal ball is not functioning, I would look it up on Google anyway, LOL. Knowing all the while that I am probably on borrowed time.

        • drdondizon

          Hi Suzy, You are right; too often hindsight is 20/20 isn’t it? I know many in my own professional life who look at those who are being treated for metastatic cancer and think, “not me”. But, one doesnt know what one will do until they are in that situation, no?
          The will to live is engrained in all of us. There is no “right” way to die; just as we should live by our own rules, only we should dictate how we die. To do so requires a fully informed view on prognosis and expectations though- perhaps it is here where we need to make greater strides.

          I know as an oncologist, it is what I struggle to do each day and with each new patient that I meet.

          I am sorry for your losses, truly.
          DSD

          • Suzi Q 38

            Thank you Dr. D,
            Your patients are lucky to have you to help them through it all.

  • meyati

    Hi Dr. Dizon, I enjoyed reading about your flexibility in dealing with patients, and willingness to understand them. My first oncologist was a jerk that refused to answer any questions-said that I was too detail oriented. I guess I’m in remission from radiation, the post-rad CAT with contrast gave me a beautiful clean bill of health. I’m keeping my teeth too. I was diagnosed with incurable aggressive atypical BCC just below my nose. It looked like a tiny cyst and I couldn’t find anybody to take it off, until it began pressing on a nerve in my mouth. Mine was very rude, more popped up before the stitches were removed. I’m missing part of my nose, lip, and tissue in between. I think that all cancer patients live with fear. I’m always scanning my face for anything that looks a bit odd.

    Please don’t go through the mental arguments about me refusing to follow the recommendations of the ACS. The jerk wanted to remove my right eye, the nose, bone, flesh, and skin on the right side. I asked why the surgeon couldn’t just remove the flesh and nose-she said she’d make my face match. He said that I had to have a surgeon he chose. #1– he never ordered any lab work to see if I was a good surgical candidate. #2-he refused to answer any ?s about how long would it take to get to get a prosthetic face? how would a wound like that be cared for? where would my body be after surgery? I took a tattooed biker grandson up for the next visit. Levi scared the answers out of him. He was enraged that I went to the surgeon to see if the bone was involved-it wasn’t-he bragged that he changed the time for the tumor board and cut out the initial surgeon and the radiologists when my case was presented. He promised that if I had radiology-I had only 5 years, if I went his way I would have 10-then there would be more surgery, then chemo which everyone agrees it doesn’t work, then radiation-then who knows. He promised me that if I had rad, I’d be in his office begging him for surgery. I asked if he meant himself or any oncologist-he said him, and he could guarantee it. I told him -No- you can’t guarantee it, I might be in a car accident, get shot, have a car wreck, move somewhere else. I set up radiation because I value quality of life-didn’t want to be shipped off 2,000 miles for a million dollar surgery (especially in today’s politics about medical care), My daughter, speech therapist, had 3 clients that had PT that reduced their gag reflex and swallowed their tongues-dead, I was greatly concerned how this surgery would affect my family. He told me that I’d look exotic with an eye patch-Dr. you might not agree with me, but Johnny Depp is the only person that looks exotic with an eye patch! Also- it’s BS about needing a year to make a plastic or metal nose. In 1554, Tycho Brahe lost most of his nose in a sword fight about who was the best mathematician in Europe. Brahe was the best mathematician, because he killed his opponent. The doctors in Prague made Brahe a gold nose for King Peter’s court, and a silver one for normal wear. I told the jerk and my new oncologist that if this could be done in the 1500s, surely modern medicine should know to to make a plastic nose-it’s not that complicated and I’m not impressed with them.

    My father had intestinal cancer. He was scared when he got a stomach ache, he was scared if he got constipated.

    I want to be with my family-to smile, laugh and eat with them for as long as possible. I want to keep sleeping with my 100 lb coonhounds and brush them and their teeth. I might have a short time or a long time-but as long as I’m not fighting with the doctors-AND BELIEVING THAT THEY ARE DOING THEIR BEST considering its an ‘interesting cancer’-I should do okay for today and tomorrow.

    • drdondizon

      Hi Meyati- I don’t think we as physicians can truly understand the gravity and anxiety of cancer and the modes of treatment that are offered, especially when that treatment leaves behind scars, physically and/or emotionally. I think your journey holds an important lesson for all of us- one needs to advocate for him or herself. Afterall, I as a doctor am not the one that will go through the treatments I might recommend, have to withstand its side effects, and any potentially lingering toxicity. Only you can decide if the benefits outweigh the risks, informed by your own personal views of what’s important, and what’s unacceptable.

      Here is hoping that you have many better todays and tomorrows.
      DSD

      • meyati

        Thank you very much. I hope that you write another article next year and I should be able to tell you that I had another good CAT. At the first visit, he told me that I’d have to have PT, he didn’t have a clue what I knew. I knew the Speech pathologist would have to strap me down-restrain me in every way, and force a lubricated tube down my throat, because the throat is the only body part that doesn’t lubricate itself. If this isn’t done, the throat will seal shut and the person won’t be able to talk or breathe. I quickly estimated $30,000 plus for this treatment, and that was before I knew that it would take a year more or less. She did this to severe stroke patients at the VA. After her contract was over, she changed to caring for crimially violent teen agers with head injuries, etc. and stayed there. I kept wondering how my head could be safely restrained because of so much bone removal. Sedated patients instinctively fight.
        A physician should never assume that a patient has a certain (low) level of medical knowledge. At that point, my job was to listen carefully. I watched body language, tone of voice, word choice, facial expressions, and what was said about my care. You sound like you respect your patients, and are empathic.
        Thank you,

        • drdondizon

          You’re welcome, Meyati. I will admit that I am more keen to be introspective when it comes to my patients- to ensure I am doing my best to listen and respond, rather than dictate what I believe is in a patient’s “best interests”. There is truth to what you say though- more and more, patients have access to cutting edge medical knowledge and the best of the available options- thanks to social media and the internet. Patients and clinicians must be more collaborative, engaged, and act in partnership I think. Gone are the days of “doctor knows best”. They only exist on televisions or movie screens. DSD

  • EmilyAnon

    Dr. Dizon, I have tried asking this question a couple of times on other threads, but no doctor has ever answered. I hope you will. It’s regarding the legal strength of advanced directives or living wills, which as an oncologist I’m sure you support. If a patient has explicitly written “no heroic measures” and the family contests that at the death-bed, possibly suggesting a lawsuit, whose wishes will be honored?

    • drdondizon

      Hi Emily,

      Only the patient can reverse his or her advance care wishes. Thus, a living will/advance directives should speak to those wishes in case the patient cannot. The living will should supercede the family’s wishes if they are not concordant with the patient’s own.

      If the patient has a health care proxy, then that proxy’s responsibility is to make sure that the patient’s wishes are respected. Sometimes the health care proxy will reverse the stated advance directives of the patient. Clinicians often will trust that the health care proxy is acting on behalf of the patient, versus his or her (or the family’s) personal wishes.

      However, if ever in a situation where conflict arises, particularly for one at the end of life, a palliative care clinician can really help navigate what is often a very challenging, emotional, and stressful time for all involved.

      I hope this helps!

      DSD

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