Originally published on Cancer Doc in Evolution; reprinted with permission.
It has been easy living in Cleveland as a Cavaliers fan over the past couple of years. Although this season has tested the determination and grit of these hardwood competitors, the city remains committed to the conviction that we will be strong contenders to bring another championship to Cleveland. As I was refreshing my browser last week to catch up on the latest score, I was surprised to instead be enthralled by an elegant piece by NBA star Kevin Love. The article painted an intimate portrait of how mental health problems can occur even in someone who is at the pinnacle of their field; by reaching out without being judged, one can seek help, and can overcome and persevere.
This theme has permeated into the medical field, where doctors have now been empowered and tasked to no longer suffer in silence, but to recognize signs of burnout and reach out to people and services to help them find balance. We also have underestimated the prevalence of depression in our patients with cancer, and have led efforts to screen and recognize the signs of trouble and seek help for our patients diagnosed with depression during their cancer journey.1 Although these are all movements in a positive direction, a patient encounter highlighted that we must not forget about caregivers, the valuable role they play, and the emotional burden they carry.
I had met my patient and his wife one afternoon as I was rounding in the hospital. We instantly bonded over the fact that we each have two daughters born 2 years apart, and joked about how blessed we are to have three ladies running our homes. He had neglected a growing lump in his testicles for many months and his wife finally convinced him to come into the emergency room after he developed unrelenting abdominal pain. He was diagnosed with advanced testicular cancer with spread into the lymph nodes in his abdomen. We had a long talk about his life, expectations, and wishes when it came to potential treatment. He demanded nothing less than a cure for his disease; I gleamed with rare pride, as this is truly one of the few situations in advanced cancer where I as an oncologist could grant his wish. The dramatic survival rates that can be seen even in advanced testicular cancer have served as the benchmark to what we all hope to offer all our patients with advanced tumors. I sat in the chair and described the journey ahead, the risks/benefits of chemotherapy and potential future surgery, never losing the sight of cure. We shook hands and I hugged his wife, and as I walked out of the room it was not lost upon me that I could easily be on the other side of this interaction.
He left the hospital after his orchiectomy and we scheduled a visit to my office for embarking on chemotherapy. He quickly delegated to his wife during our conversations and she was the de facto leader in coordinating his care while she was balancing work, kids, and the daily tribulations that life brings. We started chemotherapy with the expected hiccups, yet they both sailed through and preserved with strength, courage, grace, and dignity. At home, I would often reflect to my wife how much they were juggling and how they did it with such composure that really put our own daily grind into perspective. We celebrated the end of chemotherapy, negative markers, and negative scans. We embraced like we did that day in the hospital bed where we first met, and this time I got to high-five his two beautiful daughters. I remained optimistic that although his life would never be the same, he would most likely remain cancer-free.
The key to guaranteeing that his cancer remains in remission was that he continue to be monitored with labs, scans, and physical exams with me. Three months passed and I saw his name on the list for that afternoon. I welcomed the opportunity to reconnect with him and his family and to learn whether he was successful in getting his oldest to successfully ride a bike by herself. Their appointment time passed and before I knew it the day had come to an end without him showing up. We were able to get in touch with him the next day and he apologized and explained, “Life has just been hectic…,” and promised to reschedule. The same song and dance persisted with scheduling of appointments and then no-showing for appointments for months. Every time I would phone, there was always a rational explanation. After multiple attempts, time passed and life continued for the both of us.
I would often question whether it was something I did that led to the lack of follow-up. Second-guessing is a daily affliction in oncology and is par for the course for any dedicated oncologist. One night many months later, I was making late rounds and was seeing a new consult in the emergency room. As I walked by a room, a familiar voice resonated through the chaos of the emergency room and I reconnected with my former patient. Immediately my mind started racing with the fear that his cancer had returned.
He quickly allayed my fears and apologized for not following up. You could see the anguish and the worn look in his eyes. He explained that they were not in the emergency room for him, but for his wife. She had developed severe chest pain and was brought in for further work-up. He told me how stressful life had been ever since his diagnosis, and although he was thankful to be cured, the toll of being a caregiver had just been too much for his wife. I did my best to listen not as an oncologist, but as a friend and a husband who is blessed to have an amazing wife also. He felt that his wife had taken on so much without any help for too long and now had finally reached her breaking point.
“Doctor, I need her to be all right. I can only go so far to fight this all by myself,” he said. We embraced again and I did my best to let him that she needs to know how your feel about her and that I would keep hoping for the best for them. I told him to please keep me updated and we went our separate ways.
Two weeks later, I saw his name on my schedule, and to my surprise he and his wife were both in the room. She, as usual, started the conversation and reassured me that she had only experienced a panic attack and everything checked out during her emergency room visit. They held hands, unified as one, and told me that they had found some amazing resources to help them cope and succeed with the challenges of their lives ahead. I could see in their conviction again the same courage I saw when they battled this disease initially. We shared the good news with negative scans, tumor markers, and exam, and looked forward to new stories about our kids in 3 months.
A diagnosis of cancer infiltrates both the individual and their support system. Although my focus as an oncologist usually remains on the patient sitting in front of me, I am only a success if I respect and recognize that it takes a village to successfully treat that patient. Caregivers are a key part of this village and they can sometimes neglect to realize how important their well-being is. Studies have highlighted that spouses of cancer survivors are less likely to receive treatment for depression.2 If we could address this inequality and make sure caregivers get mental health support we could potentially improve the well-being of the whole family.
I clearly don’t have all the answers and solutions to addressing this problem. Yet my humble approach is to try to ask everyone in the room how they are coping and handling the situation. I also try my best to be more cognizant of red flags and try to reach out to social workers, support groups, and make sure the caregiver is following up with their own doctor. I emphasize that the value and importance of taking care of themselves. We are clearly in a renaissance where the stigma has been removed from talking about mental health in many facets of life, and by addressing the well-being of caregivers we could also improve outcomes for our patients with cancer. This is part of our responsibility as oncologists, but more importantly, as human beings.
- Massie MJ. Prevalence of depression in patients with cancer. J Natl Cancer Inst Monogr. 2004;(32):57-71.
- Litzelman K, Keller AO, Tevaarwerk A, et al. Adequacy of depression treatment in spouses of cancer survivors: findings from a nationally representative US survey. J Gen Intern Med. Epub 2018 Feb 5
Gerard Joseph Ventura, MD
Mar, 16 2018 10:22 PM
I would not second guess his non-compliance as something you said or did. Instead I would ask him if his missed appointments with you were because he couldn't pay the cashier in the lobby. Ironic as it is, something "that has nothing to do with you."
Mar, 22 2018 5:29 PM
Twice a month, we run a free, drop-in, audio-visual (optional) virtual support group for advanced cancer caregivers and recently bereaved. All our groups are peer-led and can be joined online or by phone; for more information, please visit our Answer Cancer Foundation (MN 501c3) website.