Newly Diagnosed? Key Steps for Success
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.
Tips for Making the Most of Your Doctor Visit
Dr. Julia Hansen, Plastic Surgeon Oregon Health Sciences givers her advice.
Preparing in advance and setting priorities for your time with your physician will allow you to get what you need from your appointment and develop a valuable relationship with your provider. Here Juliana Hansen, MD, division chief of plastic and reconstructive surgery at Oregon Health & Science University (OHSU) and three residents —share their ideas to help patients make the most of their medical appointments, particularly when meeting with a physician for the first time.
Q. Recognizing that patients’ goals for a visit vary widely, depending on their unique diagnoses and needs, are there some general steps that patients can take to prepare for a visit with a physician?
A. Patients should think about what they want to get out of their visit: confirm a diagnosis, receive a prognosis, discuss treatment options? Communicating their goal for the visit will help focus the conversation and ensure that they get what they need. Thinking about their priorities (quality of life, avoiding pain, longevity) before they come in is also helpful. Being clear on priorities and communicating them will help everyone.
Q. Is there any specific information that patients should consider bringing along to a visit?
A.It is always appreciated when a patient brings along a written version of their medical history if it is complicated, and the same applies for a list of medications. This information can be handed to a doctor or used by the patient to make sure that questions are answered correctly. It is remarkable how many people forget details of their medical history, surgical procedures they’ve undergone, and medications they’ve taken. This information is essential in starting a new medical relationship. Finding out pertinent family history can also be helpful. Problems related to anesthesia, bleeding disorders, clotting disorders, heart disease, and cancer patterns in family members may be very important information.
Q. Do you have any advice for patients regarding research that they might want to undertake in advance of their appointment?
A.If possible, it’s a good idea to spend a bit of time researching your doctor’s expertise and your diagnosis. When searching online, always be sure you are getting information from official, reputable medical websites, university sites, or government sites. Blogs and message boards are not reliable sources of information and can create false impressions that may at best waste time and at worst be detrimental to decision-making and the doctor/ patient relationship. For example if you are dealing with a cancer diagnosis websites such as those of the National Cancer Institute, CancerConnect and other credible cancer focused sites provide reliable information that can help you prepare for a better visit.
Q. Once at the appointment, are there any specific questions a patient should ask or steps she should take to ensure that communication with the physician is open and thorough?
A. Patients may want to start by finding out if there are time constraints they need to consider. Knowing how much time has been allotted for the appointment will help you prioritize questions and get organized. Once you are communicating with the physician, be upfront about what you know about your diagnosis and treatment options, and make sure that you speak up if you don’t understand something. Confirm early on with your doctor that he or she is familiar with your diagnosis and comfortable treating you. Don’t hesitate to ask how often your doctor treats people with your diagnosis and how many patients he or she has treated.
Q. Do you have any thoughts about the value of recording a visit or taking notes of topics covered?
A. If you want to make an audio recording of your appointment, be sure to first ask your doctor if he or she is comfortable with that. If not, taking notes is a good option. Bringing someone along to take notes for you is even better. Studies have shown that most patients retain only about 10 percent of what is told to them during an appointment. Having a printed summary or notes to refer to is a really good idea.
Q. Are there other steps patients should consider as they prepare for an appointment or engage in dialogue with their doctor during the visit to ensure a productive, satisfying overall experience?
A. Patients should let their doctor know about things that are really important to them on which their treatment may have an impact, such as work responsibilities, leisure activities, athletic pursuits, and family responsibilities. It is very helpful for patients to disclose unusual family situations, insurance issues, and caregiver and support details that may affect treatment decisions. Religious beliefs that may have an impact on treatment decisions are also essential to disclose, such as the desire to avoid any blood products. Patients who have been clear about their priorities for treatment and their personal circumstances will be able to work with their doctor to create a treatment plan that is appropriate and satisfying.