We Are Not Alone: The Need for Innovation in Cancer Care
Jul 28, 2016
My father died of cancer on his 80th birthday. For more than two years he battled head and neck cancer, the treatment for which is known to produce particularly nasty and life-altering side effects such as loss of taste and difficulty swallowing. When he was diagnosed, we all knew that life would never be the same. What we didn’t know was exactly how much it would change. We also had no idea how few tools and resources exist to help patients with cancer, and those who care for them, navigate the complicated journey that begins the moment you receive the bad news.
My father lived in Kenosha, Wisconsin, a small town situated on Lake Michigan, north of Chicago where I currently live. The distance between the two cities is less than 70 miles but, due to the limited options in oncology care available in Kenosha, the distance may as well have been 700 miles. I’m grateful for my years of experience in the world of oncology; they give me a unique perspective, deep knowledge and great familiarity with the universe of cancer treatments and research, and a good understanding of the medical vernacular associated with the disease. This background helped us at first. I did a lot of research and together we were able to find a good doctor in my father’s hometown. Later on, I was even able to help my dad register for and be accepted to a clinical trial. Still, we encountered obstacles almost the whole way along the cancer care continuum (the term used in the cancer community for the time from diagnosis to end of life).
While we controlled what we could, much was completely out of our control. I firmly believe that many of these obstacles could have been avoided or circumvented had we been privy to the situations and given a chance to anticipate them.
At the start of his treatment, my father was stubborn. Because of the side effects of radiation, he couldn’t eat and he started losing weight rapidly. The doctor recommended he use a feeding tube to get the calories and nutrition his body needed to stand up to treatment. Dad didn’t want the feeding tube, so he refused. His weight loss severely impacted those early days of treatment; it wasn’t until he relapsed and had to go through it all again that he agreed to use a tube and we found that it helped immensely. It turns out that dad wasn’t alone in not adhering to cancer treatment recommendations: Medication and treatment adherence among cancer patients has been found to be as low as 20 percent.[i]
During treatment, my father almost died from a stroke in his doctor’s office due to a miscommunication, or really lack there of, between physicians about the correct dosage of a blood thinner. One minute he was discussing pending surgery, the next he couldn’t talk at all. I’ve since learned that we weren’t alone in this, either: Miscommunication between physicians has been found to play an important role in 80 percent of diagnostic and treatment mistakes.[ii]
After another relapse, my father’s hometown doctor told us that there was nothing more he could do, that he had exhausted all treatment options, that further treatments would do more harm than good. This may have been a fair point at the time, but what the doctor did not understand was how willing we were to do whatever we could to fight the cancer. We didn’t stop looking for other options and, thanks to the recommendation of a family member, we found another oncologist in nearby Milwaukee who was determined to help us achieve my father’s goals. Thank goodness we weren’t alone in this case because for many, living with cancer means facing an overwhelming variety of healthcare decisions after diagnosis, including choosing doctors, understanding treatment pathways and choosing a healthcare facility in which to receive care.[iii]
As of 2014, there were over 14 million patients living with cancer and survivors living in the United States. By January 1, 2024, it is estimated that the population of cancer survivors will increase to almost 19 million.[iv] I wish my dad was one of those counted as survivors, but I know it’s important to recognize that people who survive cancer, and those who care for them, may still face difficulty in coping with the long-term aspects of treatment as well as psychological fears about recurrence.[v]
I am so proud to work at a company that has committed resources to not only develop novel treatment options but also to improve cancer care. We launched the Astellas Oncology C3 Prize precisely because of the immense unmet needs for those living with cancer, their loved ones and the communities they live in, and because the numbers of those who are affected by the disease are expected to grow. The C3 Prize wants to bring to life bright ideas that could make traveling the path along the cancer care continuum a little smoother.
The C3 Prize is more than a call to action: it is a challenge intended to encourage the spirit of entrepreneurship for all people affected by cancer and passionate about cancer care, including patients, caregivers, healthcare professionals, advocates, inventors, entrepreneurs and the public at large.
I understand the complexity of navigating cancer care beyond treating the disease itself. From my point of view, no matter how patient-centric a company is, it’s important to recognize that it may not have all the answers. From an Astellas Oncology perspective, the C3 Prize is exciting because it aligns so well with our mission and vision to enable cancer patients to focus on living. From a personal perspective, I am excited to see what ideas and innovations in cancer care come out of the C3 Prize this year, and in the years to come.
I know my father would be, too.
For more information about the challenge, please visit: www.C3Prize.com*.
Please note that this post describes the personal story of a cancer patient and his caregiver and may not be the typical experience of cancer patients and caregiver s. This post is not intended as medical advice or to replace advice offered by medical professionals.
*See terms and conditions at www.C3prize.com for full challenge rules and eligibility. Void where prohibited. No purchase necessary. No entries after August 8, 2016 at 11:59pm CST.
[i] Partridge AH, Avorn J, Wang PS, Winer EP. Adherence to therapy with oral antineoplastic agents. Journal of the National Cancer Institute 2002; 94(9): 652-661.
[ii] Woolf SH, Kuzel AJ, Dovey SM, Phillips RL. A String of Mistakes: The Importance of Cascade Analysis in Describing, Counting, and Preventing Medical Errors. Annals of Family Medicine. 2004;2(4):317-326. doi:10.1370/afm.126.
[iii] American Cancer Society. Cancer.org. 2016. Available at: http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf. Accessed February 5, 2016.
[iv] Cancer Treatment & Survivorship Facts & Figures: 2014-2015. www.cancer.org. http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf. Accessed March 31, 2016.
[v] Cancer Care Nova Scotia. Cancer Care Nova Scotia. Available at: http://www.cancercare.ns.ca/site-cc/media/cancercare/3adherence management. Accessed February 7, 2016.