These basic principles can help you navigate the journey no one plans to take.
By John Leifer
It takes just two words to shatter the predictable cadence of our lives and launch us on a journey of unknown length to an unforeseeable destination: It’s cancer.
Seconds after the words emerge from the mouths of our physicians, drawn out and hanging in the air as though spoken in slow motion, our bodies snap into action. Adrenaline courses through our veins as we struggle to size up the threat. Then waves of anxiety begin their relentless assault on our consciousness.
Our minds are reeling. We feel an overwhelming urge to shut down, to pretend that it is merely a bad dream or a mistaken lab result. But the reality is undeniable. Our lives will never be quite the same. We’ve joined the ranks of more than 1.65 million Americans who will be diagnosed with cancer this year. The question is, How will we respond to the challenge?
If you have been diagnosed with cancer, you don’t have to allow yourself to be passively relegated to the ranks of victim or statistic. You can become an active participant in navigating the journey. How you respond at this moment of crisis may have a tremendous bearing on the length, difficulty, and even outcome of your journey through cancer.
Successful navigation of the roads that will lead you through diagnosis, treatment, and recovery requires accurate, trustworthy information. Guidance through this space could easily fill the pages of a book (as I found out by writing one), but there are some essential steps that can steer you in the right direction from the beginning. Here, based on hard-won experience, is a summary of those key steps.
Step 1: Slow Down.
If you have been recently diagnosed, you may be among the large number of patients who feel a tremendous sense of urgency to deal with the invader—and deal with it now! While understandable, reacting in this way can prevent a more methodical, careful selection of a care team that will be the right choice for the long term, a thorough understanding of treatment options, and optimal decision-making for yourself and your family. The reality is that though cancers grow at varying rates, very few progress at a speed that would make it necessary to rush into treatment without obtaining the information necessary to make informed decisions.
Step 2: Identify Your Traveling Companions.
As a patient you will likely find that information doesn’t dribble in; it comes in a torrent. This information must be processed, saved, and acted on. All of this occurs at a time when the stress of the diagnosis means that you’re likely not thinking as clearly as you usually do and are thus less able to sort through the information you receive. That’s one of the prime reasons for identifying a caregiver who will be present for all interactions with the medical team. The caregiver—ideally a family member or close friend— can takes notes, record sessions for later review, ensure compliance with the doctors’ instructions, and share information with others as necessary.
But the role of caregiver goes far beyond that of secretary. Caregivers play an invaluable role in meeting the emotional, spiritual, social, and functional needs of their loved ones. Though rewarding it is not an easy job. Caregivers often ride the same emotional roller coaster as the cancer patient, and they struggle with anxiety, depression, and burnout as a result. It is important to select a caregiver whom you can count on consistently, even when the journey gets tough, and to remind the caregiver of the importance of self-care!
Step 3: Find The Best Care Team for You.
The medical profession has worked hard to perpetuate the myth that all physicians are created equal. If only this were true! Most people would be shocked if they understood the tremendous variation in physicians’ training, experience, knowledge, clinical skills, and compassion—all factors that could affect the quality of care you receive.
Your best chance of finding the right doctor is to do your homework. Begin by viewing your initial appointments with potential physicians as job interviews—they are interviewing for the job of caring for you. Your task is to find a physician who possesses the attributes that you deem most important.
And remember, depending on your diagnosis, this process is one you may go through several times as you build a care team that may include several specialists at various points along the course of your journey. Selecting individuals who meet your needs, and who can communicate effectively with the other professionals on your team, is essential.
Step 4: Choose A Care Facility Carefully.
Just as doctors vary in critical ways that can influence your care, so too do the facilities in which they practice. It is important to understand the differences between the treatment options and expertise available at various facilities. For instance, the care offered at a community cancer center and that provided by an NCI-Designated Cancer Center will likely be significantly different. While excellent care is available at a broad range of facilities, it is important to understand the treatment requirements associated with your unique diagnosis and to seek care at the place that will offer you the best possible outcome.
Step 5: Understand Your Treatment Options.
Cancer is not one, single disease, and there is often more than one option for treating a particular type of cancer. It is essential that you have a complete understanding of the treatment options, the risks and benefits of each, and the costs associated with different forms of treatment. Standard pathways or methods for treating the most common types of cancer are published by the National Comprehensive Cancer Network (nncn.org), and they are available in versions written for lay readers. If your physician appears to be deviating from a standard pathway, know that you have the right to inquire as to why.
Step 6: Seek A Second Opinion.
Virtually everyone can benefit from a second opinion, which is a valuable way to gather more information about your diagnosis and the options available to you. And yet many patients do not seek a second opinion—either out of fear of insulting their physician or the mistaken belief that all physicians will take a similar approach to treating the disease. Sometimes patients simply don’t want to go through the hassle when they are already struggling to cope.
But unless you have a very early-stage, easily managed tumor, chances are you will benefit from a second opinion. It may allow you to explore a broader range of treatment options, as well as gain additional information about the disease; if nothing else, it will simply confirm what you’ve been told and give you greater confidence moving forward with treatment.
Step 7: Actively Prepare for Treatment.
Now that you have settled on your doctors, the facility in which you will receive care, and a specific treatment plan, you are ready to prepare for active treatment.
First and foremost, talk with your care team about what to expect during active treatment. It is far better to anticipate potential side effects than be caught off-guard when they manifest.
Inquire about nutrition, exercise, pain management, and any other topic you believe is relevant to staying the course and successfully completing the journey. Do not expect your physicians to read your mind about issues that concern you.
Finally, understand the financial ramifications of treatment. If you have concerns, discuss them with the care team. A social worker may prove to be an invaluable resource in helping address these issues.
Whether your initial treatment is successful or you move on to a different treatment strategy, hope and optimism will play an essential role on your journey. Hope is the energy that propels us forward despite the presence of obstacles; embracing hope and looking ahead toward optimal health can help immensely as you manage your daily life with cancer.
Regardless of your final destination, the journey through cancer will bring trials and tribulations. It will forever change you, and to the degree that you are able to embrace the struggle, it will strengthen your very soul.
John Leifer has spent more than 30 years immersed in the healthcare industry as a senior healthcare executive, consultant, academician, and writer. An outspoken advocate for patients’ rights, he has published widely on the need for patients to receive appropriate, safe, and effective care—including two recent books: The Myths of Modern Medicine: The Alarming Truth about American Health Care (Rowman & Littlefield, 2014) and After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead (Rowman & Littlefield, 2015). To learn more visit afteryouhearitscancer.com or write to John at mailto:firstname.lastname@example.org.