Patient Empowerment means taking greater control over decisions and actions affecting one’s health.
Why is this important for cancer patients?
According to the National Cancer Institute, approximately 39.5% of men and women will be diagnosed with cancer at some point during their lifetimes.1 Being on the receiving end of a cancer diagnosis bears a heavyweight on one’s mental and physical wellbeing. Juggling an overwhelming amount of information on top of a lack of medical expertise makes it all too easy to follow your oncologist’s recommendations without fully understanding them. However, staying in the loop of your cancer prognosis and treatment plans offer a sense of empowerment.
Your Cancer Prognosis
Before you can make informed decisions about your cancer care, you must understand your prognosis. A cancer prognosis estimates the disease’s likely course and outcome based on data from similar patients. Many factors can influence this projection, such as the cancer type, its state of progression, how your body responded to a given treatment, and physical health (you can read more in Cancer prognosis). Remember that your oncologist determines a cancer prognosis from statistics collected over many years, such as cancer-specific survival rates, disease-free survival rates, and progression-free survival rates. While these figures help estimate your prognosis, they are not a definite prediction of your experience.
Your Treatment Options
Understanding your prognosis brings a bigger question: to what extent can patients influence the course of their cancer journey, especially if the prognosis is poor. We all know that cancer is complex, and oncologists need to navigate different treatment modalities and (I.e., surgery, chemotherapy, radiation, targeted therapy, and immunotherapy) and the disease’s progression. Years of experience led to the development of care standards, and the best oncologists developed a nuanced understanding of those recommendations. There is an apparent correlation between your prognosis and the standard of care, and when the prognosis is not great, a patient is entitled to question even the best experts. An empowered patient will know to ask the goal behind their treatment― are you trying to eliminate, slow, or minimize cancer? What are the short term and long term side effects of each treatment? What are the risks? How will the treatment affect your quality of life? How likely will cancer come back? And most importantly, what are the alternatives?
Bringing the Future Faster
Cancer is deadly, and unfortunately, we did not find the cure for cancer yet. But cancer treatment improved dramatically in the last 20 years, and with new promising technologies like immunotherapy and targeted therapy, there is real hope for future cancer patients. Simultaneously, with very long development cycles (10-15 years) of new cures, those scientific breakthroughs are left as an unfulfilled promise for today’s patients. The best path forward for many patients is going through clinical trials that open the door to prospective future medications in the present. Sometimes as the first line of therapy, sometimes as a last resort, and often in combination with standard of care therapies. Still, the reality is that only 3-4% of adult cancer patients enroll in clinical trials.
The Catch and What To Do About It
Here is the catch - the medical system carries the torch of continuously improving the standard of care and leaves patients to find the balance between poor prognosis, standard and innovative therapies for themselves. Typically, oncologists don’t have the time to sieve through many available clinical trials and recommend a suitable one. There is no systemic effort to help them do this research or even suggest the points when such research would make sense. Nonetheless, there are resources dedicated to finding clinical trials aimed at your cancer type. Make sure to discuss any clinical trial or alternative treatment with your medical team before agreeing to one. Although your oncologist didn’t have the time to discover these innovative treatment options, he or she may be glad that you did. You would be surprised by the game-changing results that can come from safe and scientifically found alternatives.
Tackling cancer is by no means an easy journey. Taking steps to better understand your situation and plans of action allows you to make more informed decisions. Advocate for your cancer care by striving for the best option to foster the best prognosis. Many cancer patients need to travel an unpaved road. Becoming an empowered patient is likely your route.