When it comes to cancer, do not just focus on survival

After my recent blog posts, I was inundated with questions regarding how I would change the way I interact with my cancer patients if I return to work.  I’ve tried to chronicle my experiences – from diagnosis to death – in hopes that you will learn how you can interact with your patients more effectively.

Diagnosis

There was an undeniable shock that disrupted all of the carefully-constructed systems and routines with which I moved from day to day. For example, even the mindless greetings that I received from friends and colleagues after my cancer had been diagnosed had changed. How does someone with the recent diagnosis of cancer answer the question, “Hi! How are you?” The most accurate answer is, “Not so good. I have cancer.”

The shock of the diagnosis introduced chaos into my daily routines that I had carefully crafted to maximize efficiency in performing everyday tasks. Now my whole life revolved around being sick; it was hard to put structure to my day when I didn’t know how I was going to feel moment to moment. How should I rearrange my incredibly busy life to continue to move forward, even if at reduced speed? What, if anything, should I eliminate? Eliminating an important activity felt tantamount to giving up, but I tried to carry on despite (and at times denying) my disease. The response to changes in my routine spilled over into my personal life, affecting the inevitable reconfiguration of relationships with loved ones and friends.

Dying

A couple of friends thought that it must be comforting to be an oncologist when struck with cancer, because I could better understand my disease and its treatment than most cancer patients. However, the opposite is true: having actively cared for patients dying of cancer brought to mind vivid images of physical and social involution, the inevitable melting away of body mass, disability, pain, and morbid deathbed scenes. I am haunted by the visions of patients who have died on my inpatient service before I received my diagnosis.

I recall waiting for my first dose of chemotherapy, sure that it would kill me because of the awful side effects of the drug that I had observed during my practice. While some think of chemotherapy as a powerful healing antibiotic, I can only think of it as a poison.

Percentages also proved difficult for me. As oncologists, we routinely give our patients success percentages as part of a prognosis; often these percentages are “X to Y percent of success,” with “X” being the low number and “Y” being the top end. In order to maintain hope, our patients naturally focus—if not fixate—on the top number; as a clinician, however, I know that those two numbers are the outliers and the majority of the cases actually occur somewhere closer to the median. When given a spectrum of percentage for my prognosis, inevitably my experience causes me to run the numbers in my head and to realize that my chances are much lower than that higher, hopeful number.

Discomfort

The discomforts I fear the most are physical pain. I know that pain is controllable for most patients with cancer, and as a physician I know that I had greater access to pain medications than do most patients. Yet I suffer from pain during my cancer treatment and continue to fear the possibility that increased pain would accompany the recurrence and advancement of my disease.  Pain is a double-edged sword; I would happily get rid of the pain by taking pain meds; I hesitate to do that, however, because I fear losing the pain as an indicator that my disease may be progressing.

Disability

At the time my cancer was diagnosed, I ran on a regular basis. By the time of my first round of chemotherapy, my quality of life was substantially worse than when my cancer was first diagnosed. In fact, myopathy (weakening of muscles) had already developed.  In addition, because ataxia (loss of coordination) and neuropathy (abnormal nerve function caused by the chemotherapy) also have set in, my life was radically different within just a few months.

Drug and other treatment effects

I suffered through adverse effects of treatment (including nausea, vomiting, weight fluctuation, insomnia, anxiety and depression) as silently as I could, not wanting to complain to my providers too much. Although we cannot know what goes through the minds of our patients when they suffer from side effects of the treatments that we prescribe, I felt that because I was a physician, I should not complain. So, I rarely mentioned these adverse treatment effects unless I was explicitly asked about them.  I wish my doctors would have asked me more about the side effects because I probably would have answered them honestly if they asked. I am sure we could have altered my treatment in such a way that my everyday quality of life improved.  If I return to an oncology practice, I now know I will be better about taking side effects patient histories from my cancer patients.

Dependency

As physicians, we were the ones on whom others relied for their wellbeing and, at times, comfort and consoling. Hence, I found it very difficult to become dependent on others for my personal and professional needs. But my cancer and treatments gave me no choice: I had to be dependent on my family members, friends, and coworkers. I discovered that others wanted to help my husband, Brian, and me, even needed to help us to feel that they were doing something to ease our burden. We came to realize that the therapeutic effects of the dependency were bidirectional. We thus sought opportunities for friends and family members to help us, which consequently lowered our internal barriers against seeking and accepting help. Nonetheless, we found, as others have, that my cancer resulted in significant adverse effects on the lives of our loved ones who cared for us.  In fact, some family members remain in denial about my disease and have unrealistic expectations for a speedy recovery.

Doubt

Not too long after receiving my cancer diagnosis, I experienced overwhelming feelings of doubt and doom. It was difficult to be optimistic and to carry on activities where the results were beyond the time horizon of a few months. Without hope, I was lost and miserable. However, when I found hope to be lacking, it was supplied in abundance by the large network of friends and colleagues that I had established during our careers.

Death

Although I fear the dying process, death itself is another matter entirely. I view death as the absence of both life and suffering, the sudden ending of existence, thought, and possibly the meaning of my life. Regardless of my religious beliefs, I know that death would be a leave-taking from our loved ones, family, and friends. I worry more about what would happen to those I leave behind than I worry about what would happen to me. What happens after death is inevitable and uncontrollable, but I cannot help but feel responsible for the suffering and loneliness I would leave in my wake.  Logically, I know I am not responsible for these things, but I feel responsible nonetheless.

Having cancer is not all bad

Having enumerated what is so bad about having cancer, I must state that having cancer has, in fact, had beneficial effects on my life. Having cancer motivated me to think about what I was doing every day, to prioritize better, and to spend time on those aspects of my life that are truly important. I have tried, and will continue to try, to give meaning to my remaining time. Having faced death, I have found life to be more intense.

Final thoughts about life with cancer

I hope that by expressing my experiences with cancer, I will encourage providers of cancer care to better understand what their cancer patients are facing. I have this advice: Do not just focus on survival! Encourage your patients to maximize the time that they have and to value each moment each day. Talk to your patients. You must try to understand what it is like to have cancer, to live with it and be treated for it, and to survive it or succumb to it. Acknowledge what you can do to help your patient and do it.

Jennifer Kelly is a molecular geneticist and oncologist.

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  • http://twitter.com/drtwillett TheresaWillett MDPhD

    Wow. Beautifully expressed and powerful story. I am sorry you have to go through this, but thank you so much for sharing your experience. It very closely mimics my mother’s cancer experience except that, due to multiple moves and being widowed, she does not have the strong friend network, making the process all the more isolating.  I believe your wisdom should be required reading for any provider who hopes to help those with cancer.  

  • Anonymous

    It is so interesting to read your comparisons between being a patient and an oncologist. Thank you for sharing your experiences. 

  • http://mrepidemiology.com/ Mr Epidemiology

    Thanks for sharing your experience. That was really eye opening.

  • http://twitter.com/therapywizard james parker

    Having experience of  Cancer  i can identify with your experience and you make some informative and helpful insights. Being the expert helps but being the patient you still have to go through the processes
    like everyone who has the disease. So  it may be beneficial for you in one way but another way not so.      

  • http://profiles.google.com/wgasawoman Sharon Martinelli

    As a cancer patient, I relate to your words – especially the ones relating to greetings. One of the difficult parts of post treatment is that everyone wants you to be “normal” and just like you were before the disease. But, that will never happen. Cancer changes you and each journey is different. Some days are just too difficult to be with people because you get so tired of talking about it and monitoring your life through the lens of cancer. Thank you for your insightful article.

  • http://twitter.com/CMEEnterprise CMEE

    no reply

  • Anonymous

    The people I know who have been diagnosed with cancer worry about something you didn’t mention:  debt.  Even among those with good insurance, the cost of co-payments and unexpected out-of-network bills can be staggering.  Most don’t have an emergency fund that will allow more than a few months off from work, either.

  • http://www.facebook.com/people/James-Sinclair/1821986355 James Sinclair

    I most appreciate you candid description of what it is like. Most of us Oncologists have given some thought to what if..? The comment about putting your friends, family and co-workers makes sense as it puts you in charge and takes some of the awkward feeling away from those who loved you before you had cancer and now have to figure out how to love you with cancer. I hope you will offer us more insight to your cancer adventure

  • Anonymous

    Thank you for your frank, courageous, and deeply human expression of the many sides of our emotional, intellectual, social, and above all, spiritual relationships with this ugly and often terrifying disease. It does not matter which type, what stage, or the expanding types of treatments we continue to throw at cancer. As a former oncology then hospice RN, and hospice manager and administrator, and most important: a close family member of several loved ones who have died as a result of cancer, I can unequivocably state that I HATE cancer. From the numb unreality at diagnosis to the very wide spectrum of dying experiences that I’ve been blessed to share, to the increasing numbers of survivors, a cancer diagnosis has supernatural ability to immediately focus one’s attention.

    Heart disease kills many more persons each year than cancer. Lung disease — apart from lung cancer — is close behind. And the Institute of Medicine (IOM) report last year on chronic pain in this country is a staggering indictment of our failure to adequately assess, let alone treat the over 100 million persons who suffer chronic pain every day in this country. Many millions more than ALL patients suffering from cancers, heart disease, lung disease, diabetes, end stage renal disease — and so on — suffer from often crippling, and always life-changing, chronic pain. In the brutal arithmetic of what we seriously assess, and perhaps treat, pain is way down the totem pole. What are we so afraid of? Failure? Interfering in some insane plan to punish wrongdoers? Interfering in a suffering patient’s “opportunity to find redemption”?

    NO — I hate unrelieved pain even more than cancer, cancer which has killed half a dozen close family members, two of whom I held in my arms as they died. We must grow up as a society, and as health care professionals. I am grateful once again for your survival and testament. I hope and pray that we may learn from your experiences, and from the lives of ALL our patients.