I lost my grandfather to Stage 4 lung cancer when I was 20, lost my father to Stage 4 acinic cell carcinoma when I was 22 (and he was only 43), and my husband and mother-in-law were diagnosed (months apart) with Stage 3 and Stage 4 colorectal cancer, respectively, before I reached the age of 40. Though I have not been personally diagnosed, cancer has had a sincere and weighty impact on my adult life.
In the year following my husband’s diagnosis, I felt isolated and detached. Although family, friends, and colleagues knew of his diagnosis and showed support in beautiful and surprising ways, it felt very lonely. It was as though we were the first couple to experience this—starting from scratch with no guidebook. I spent so much time searching, researching, and self-educating that, over time, I pulled away from actual people. Fixated on knowledge, facts, and prevailing theories, I left little room for interpersonal connection or emotional processing—It was just me and my anxious, racing brain.
As lonely as I may have been, it didn’t take long to realize that I was not alone with this preoccupation. Scouring the internet endlessly for answers to questions was not a unique experience for someone bearing the weight of a new cancer diagnosis. This wasn’t a Me problem; it was a pretty-much-everyone problem. Trying to learn what you don’t even know you need to learn is exhausting, frustrating, and messy.
Unfortunately, that’s just how it is, and that’s for patients and caregivers who have the luxury of time to dedicate to research or someone close to them who can shoulder the burden on their behalf. For many others, there are innumerable barriers and it’s even more challenging, if not impossible, to locate, decipher, assess, and utilize cancer information.
Patients and caregivers of today are generally more engaged, proactive, and knowledgeable than those of the past, and this should be recognized, nurtured, and harnessed. Not only do we have greater access to information, but we want to be in the room where decisions are being made about our health, and we want our voices to be heard. We don’t want to leave decision-making up to someone else, and we want to be educated on the topics surrounding the decisions we’ll make. We are a different “breed,” so to speak, and therefore require a different approach—a proactive, empowered approach.
As patients and caregivers, when we can’t access the information we need and can’t get our questions answered, we’re relegated to relying on a single physician to provide all the education and guidance we’re seeking. This puts patients and caregivers in a reactive state, limiting our ability to gather adequate information to make informed medical decisions and plan for our futures. It also puts undue pressure on a physician who, battling with time constraints, is limited in what education they can reasonably provide during a brief office visit.
It’s not uncommon for patients and caregivers to receive just enough information for now from their clinicians, but this restricts a patient’s ability to be proactive about their healthcare. Patients are not satisfied with “that’s all you need to know for now.” They want to know more. They want to make informed decisions with their doctors. They want to know why and how. They want to have an idea of what’s around the bend. They want to think and plan ahead.
The information is out there, as chaotic and complicated as it may be, but the incessant refrain of, “Don’t Google it. Don’t look it up. Just wait for your doctor,” is both minimizing and condescending. The unknown plays a major role in a cancer patient’s fear, anxiety, and emotional distress. Encouraging patients to not learn, not search, or not ask questions creates an environment in which the patient’s fears and distress persist. We cannot ignore what patients need—and patients need more information. Let's stop acting as though patients are stepping out of their lane in their efforts to learn about and participate in their cancer care. The patients’ lane has been blocked. Kindly move.
Educated, activated patients are positioned to improve their own health outcomes and, more broadly, cancer outcomes for future patients as well. The more we know, the more involved we can be. The more involved we are, the more cancer care of the future can truly and fully reflect the needs of the patients.
Creating Oncology Offense stemmed from my desire to lower the hurdles that future cancer patients and their caregivers will encounter as they learn about cancer and make decisions about their health and their futures. Taking into account my more recent experiences caregiving and supporting my family through their cancer diagnoses, coupled with my lifelong interest in science and medicine, this endeavor felt both natural and necessary.
Through Oncology Offense, my goals are:
- To improve the cancer experience for you, your caregiver, and your family.
- For you to feel empowered to learn and make informed decisions about your cancer care and your future.
- To help you locate the information you need and help it make sense when it doesn’t.
- To direct you to information you can act on, and to put you ahead so you’re not scrambling when things get tough down the road.
- For you to have easy access to topics often left out of the broader cancer conversation.
- For you to discover what’s possible, novel, emerging, and personalized to you, not just what is standard, what’s always been done, or what works “for most patients.”
- For you to be able to take an offensive stance against your cancer and the impact it has on your life.
I’ll provide the map, but you are in the driver’s seat. Let’s go.
~Coral
If you're looking for a private patient advocate or patient navigator, whether in-person or virtual, please check out our 1-on-1 Services page for more information.
Oncology Offense provides free, unbiased access to content, education, and resources on cancer-related topics, designed with today’s proactive, empowered patients and caregivers in mind. The content you’ll find here is not filtered or dressed up to appease sponsors (there are none), partners, or any third-party organizations. Oncology Offense is not financially tied to any institution, corporation, medical facility, or health system.
