Loss and grief inevitably make one look back, as if in the rear-view mirror of a car and wonder, “Is there something that could have been different?” Some of those backward glances are just about wishful thinking. Others are meaningful with lessons for all involved. Thinking about what Uzma would have wanted her readers to learn from her experience leads me to write this. I write not from a place of anger, but from a place of hope, where my sorrow can benefit someone else. I hope this reaches all oncologists.
Uzma The Fearless
It is December 2018. Both of us know what’s coming. But gloom descends on Uzma and me when she is referred to hospice. I call my parents to inform them. They are crying. My father recounts a conversation from the summer of 2016 when he and my mom were visiting us. He says, “It was just Uzma and me, sitting at your kitchen table.” I imagine the scene. I am upstairs, working from home. The two of them are sitting at the round table in one corner of the kitchen. The afternoon sun is filling our kitchen with natural light. Uzma and my dad are drinking masala tea.
She tells him, “I don’t know what you know about my illness, but my prognosis is not very good.” He tries to say to her not to talk ill about herself. And she interrupts him politely, “No, I am realistic. My cancer became stage 4 in February 2016. Looking at the data available about what I have, I am not likely to make it past February 2019. Any day after that month will be a bonus.”
Uzma expected honesty from everyone and almost brutal honesty from herself. Her social media posts are a testament to this. In March 2017, she wrote a very brief post on Facebook.
I am not sure whose quote it is, or whether she modified another quote to make it her own. But that is who she was. Like Dumbledore, always insisting that we must name what we fear most. Later in 2017, more than a year after that conversation with my father, in December 2017, she writes a post Prognosis: Three Years Average, that shows that 2019 is still very much on her mind. She talks in that article about being feeling ill-prepared, tired and yet hopeful. But always realistic. I always said she was an astute and skilled physician. She didn’t make it past January 2019.
Things Start Falling Apart
As I look back upon the final months of Uzma’s life, I think that despite her unflinching realism about her prognosis, she paid a heavy price for the tendency among oncologists to reassure stage 4 cancer patients by comparing it to a chronic disease. In medicine, the term “chronic disease,” usually means a condition such as diabetes, high blood pressure, and high cholesterol, conditions that are managed or controlled but not cured. It is ludicrous to compare stage 4 cancer to chronic disease. Half of the women with stage 4 breast cancer die within three years of diagnosis. Only one fifth make it past five years. I believe that using this inappropriate metaphor makes oncologists convey a false sense of hope and delays conversation about hospice.
Between February 2016 and June 2018, Uzma tried multiple medication regimens for her cancer, none except the first one working to keep the disease from progressing for more than 3-4 months. She knew where this was going. By late 2017 she had started seeing a palliative care physician of her own accord. By May 2018, her body starts to show the signs of breaking down under the onslaught of cancer and chemotherapy. Cancer is like a rebel army — it hides in this organ or that. Chemotherapy is like cannon-fire. Whether ultimately successful or not, it destroys a lot more than just cancer. The coveted status of NED or NE(A)D — No Evidence of Disease, or No Evidence of Active Disease — forever eludes Uzma.
Uzma develops significant neuropathy — her nerves are damaged. It causes tingling, numbness, and pain in the tips of her toes and fingers. The insensitivity of her fingers makes it impossible to continue making jewelry, something she enjoys doing with our daughter. Eventually, pencils, brushes and other art tools start slipping out of her hands, and she gives up all art. Her handwriting suffers. Abilities that bring her so much joy are suddenly no more.
In June 2018 she starts having falls. In July, while I am out of town, she falls in the early hours of the morning. She can’t get up by herself. She lies on the floor for a couple of hours until our son wakes up. He helps her get up. It is no longer just neuropathy, and she is also becoming weak. One more medication regimen has failed. She is given a break to help recover a bit from the neuropathy and the weakness before starting the next regimen.
Around that same time, we hear of an immunotherapy trial at the National Cancer Institute, which had worked for a woman with breast cancer in the liver and the rest of her body. She was given three months to live. With immunotherapy, she became NED.
We reach out to the doctor running the research study of that immunotherapy. We send him all the requested records and wait with bated breath for his decision. He calls back and says, “You do not qualify for this trial. The burden of cancer in your liver is so much that you could not tolerate this experimental treatment. If you were my wife, I would not put you in this trial.” We were disappointed. Uzma’s oncologist knows about this.
What Could Have Been
Hindsight is 20/20, but I believe that her otherwise brilliant, kind and compassionate oncologist failed her at this moment. And I think that using the stage 4 cancer to the chronic disease metaphor is what caused this failure. It is in July that conversation about hospice should have begun. I don’t think Uzma would have agreed to it then. But by August, her next chemotherapy regimen had caused her significant anemia requiring her to have three blood transfusions. That treatment too was stopped.
During her second blood transfusion, Uzma wearily says to me, “I think my body is finally giving out. I want to stop treatment. I am tired of living like this. We spend so much time coming to the clinic to get treatment. Then we coming again for treatment to deal with the side-effects of treatment.” She looks exhausted. I reply in the only way I know, “I know you feel that you have to keep going for my sake, for our kids’ sake. But I don’t want you to suffer anymore. You know your body best. If you decide to stop treatment, I just want to say, you don’t need to keep suffering to prove that you love us.”
Had the oncologist begun the hospice conversation in July, he might have said now, “I am sure you are frustrated that we have to give up on treatments far too quickly due to their side-effects. We had briefly discussed hospice in July. Have you given it more thought?”
In September her scans show a continued progression of her disease. She needs a cane to steady herself while walking. Stairs become a challenge. By October Uzma needed a walker. By November, we were regularly using a wheelchair to move about the hospital. Uzma, the unflinching realist, would most likely have chosen hospice in any of those 3 months if the discussion about hospice would have begun back them.
When hospice ultimately began, it was an immense boon. Had it commenced in July, Uzma would have avoided about 30 trips to downtown Chicago, each involving about 2 hours of roundtrip commute and about 6 hours spent at the hospital. She would have had two fewer CT scans, one less MRI and one less bone scan. She would have avoided about 25-30 needle pokes and three blood transfusions.
Had she turned to hospice in September, she would still have avoided 2-3 months of futile treatment and the hardships it was to bring without benefit. Some of those needle pokes, chemotherapy sessions, blood transfusions, and long commutes would have been avoided. She would have had avoided a lot of the fatigue that comes with such treatment. With the time and energy saved she might even have finished the portrait sketches of her kids that she wanted to complete. Maybe she would have finished writing the little notebooks for each of them in which she had begun writing personal messages for them. She might have done a book signing or two, or just taken more selfies!
Undoubtedly, experienced oncologists like Uzma’s know when a patient’s disease has entered a terminal phase. I believe the conversation about hospice needs to begin long before it enters that phase. Uzma’s oncologist had only one earnest conversation about hospice with Uzma — the day the decision was made to end active treatment. At that moment, Uzma’s liver could no longer bear the burden of cancer and its treatment. I believe it is the cruel use of the metaphor of chronic disease and the false hope that it creates for the treating physician that led to this outcome.
If oncologists can’t bring up hospice early enough even for fearless patients like Uzma, they have only themselves to blame if patients equate palliative care with a death sentence.
I am not saying that oncologists should not try to reassure patients and families. But they need greater awareness of the price paid by patients and families for using the chronic disease metaphor for stage 4 breast cancer. This metaphor probably lulls the patient and family into thinking the body can handle more than it can and delays the conversation about hospice. I hope that one day, the state of treatment for Stage 4 breast cancer will be like diabetes, or even HIV, a once-dreaded infection; today over 80% of 20 year-olds diagnosed with HIV can expect to live past 44 years with treatment. But that day is not here yet for Stage 4 breast cancer. We should stop pretending otherwise.
Using The Metaphor Correctly
Dale Carnegie once said, “Any fool can criticize, condemn and complain – and most fools do.” So what would I have oncologists do? I think it is reasonable to say to the newly diagnosed Stage 4 breast cancer patient that, “We have many treatment options available for stage 4 breast cancer these days. We will begin with the treatment that is most likely to be effective while minimizing side-effects and gradually move towards treatments that have increasingly bothersome side-effects. We have no way of knowing ahead of time which treatment will work to stop your cancer from growing. But once it does stop growing, or goes into remission, our goal then would be to treat your cancer as a chronic disease like diabetes, to be controlled and managed indefinitely.” That’s the only proper way to use the chronic disease metaphor in stage 4 cancer — as a faint hope, not a current reality.
If the patient were to ask, “What if it never stops growing? What if it never goes into remission?”
The honest oncologist would respond, “That is still the more likely outcome, but if that were the course of your illness, we would want to balance the quality of life with its quantity. If remission were not your fate, what would be your biggest concerns about what you want to accomplish in the time you would have?”
It would be the start of an ongoing conversation about hospice and the patient’s values and desires.
Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 180 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.