“When you hear the word ‘cancer,’ it’s as if someone took the game of Life and tossed it in the air. All the pieces go flying. The pieces land on a new board. Everything has shifted. You don’t know where to start.” —Regina Brett[i]
A diagnosis of cancer can be overwhelming, but knowing a few basic things can help make the journey ahead far more manageable. Here are five key things you should know if you or a loved one has recently been diagnosed with cancer:
1. It is normal to feel completely overwhelmed when you hear the word cancer. Despite the anxiety, and accompanying sense of urgency to begin treatment, you must slow down and be methodical about the next steps.
2. Identify a caregiver who can be at your side throughout the journey ahead. Your caregiver will fill a number of important roles, including:
· Serve as a scribe during your doctor appointments so that you have an accurate record of what transpires. This person can also be helpful in keeping other family members or loved ones informed.
· Request copies of your records from all physicians seen related to your cancer. Be certain that the records include all imaging studies and pathology reports.
· Help you navigate the complex health care system, while coordinating your care, as needed, across multiple physicians and treatment sites.
· Provide essential emotional support.
· Help you address basic functional needs at a time when many of your resources are consumed simply fighting your disease.
3. Before you can proceed, it is essential that you understand your diagnosis, the goals of treatment, and treatment options based upon objective information presented by knowledgeable physicians.
· Oftentimes this requires visiting multiple specialists – including surgeons, as well as medical and radiation oncologists. Since there often numerous methods for treating a disease, these specialists may render differing opinions regarding what is best for you.
· It is important to keep in mind that specialists have an understandable predilection for the types of interventions they deliver – a surgeon may be biased towards surgical procedures just as a radiation oncologist is biased towards radiation therapy.
· Such differing opinions can be confusing for the patient…particularly since you are now navigating in unfamiliar territory. Before making a decision about treatment, there are three things that you must know:
o As a general rule, the treatment should be based upon a “standard of care” – meaning that there is a consensus in the medical community regarding the best method(s) for managing your disease. The National Comprehensive Cancer Network, or NCCN, publishes such standards of care, or evidence-based pathways, for many types of cancer. Consumer-friendly versions of such pathways are available for free on their web-site (www.nccn.org). You would be well-advised to review the NCCN recommendations for your disease (and stage of disease). If your doctor is recommending a treatment that appears to deviate from the standards of care, ask him or her why.
o There are pros and cons for every treatment – both in terms of the relative effectiveness of the treatment, as well as the short-term and long-term potential side-effects. Only by understanding these nuances of treatment can you make a truly informed decision about what is right for you.
o There may be substantial differences in the costs associated with different interventions. While we all want and deserve the best treatment available, two treatments may be virtually identical in terms of the outcomes produced, but vary dramatically in costs. Before your out-of-pocket expenses grow astronomically, you may wish to discuss the projected cost of care with your doctors. Your physician should also inform you if he or she has a financial conflict of interest whereby they will profit more from the delivery of certain types of treatment. A urologist, for example who treats prostate cancer with a linear accelerator owned by the group has an ethical obligation to disclose this conflict to the patient.
4. Now that you are armed with far more information about the best course of treatment for your condition, you need to decide who will deliver your care and where you will receive it. Before you put blind trust in your doctors, you need to know that not all physicians (or facilities) are created equal – in fact, there’s tremendous variance in the relative quality of care delivered by different doctors at different hospitals/clinics. Unfortunately, sorting out the good apples is not the easiest task. Here are three suggestions for improving the odds of having a highly competent medical team:
· Learn as much as you can about your physicians’ training, and experience treating your particular disease. There’s nothing wrong with interviewing your physicians! You should be sizing up your doctor, not only in terms of clinical training/experience/competency, but also how you feel at a gut-level about having them lead you through this difficult journey.
o Keep in mind that practice does not make perfect, but when combined with the right training and certain inherent skills, it can make a huge difference. For instance, an oncologic surgeon who, after completing a fellowship in breast cancer surgery, has been practicing for ten years at a premier facility may produce different results than a general surgeon whose most frequent procedure is repairing a hernia. Unfortunately, there is no readily available data that allows us to compare the relative competency of our physicians.
· Consider the depth and breadth of the cancer treatment resources available at your facility of choice. Do your best to separate out the marketing hyperbole from the cold, hard facts regarding the facility’s capabilities. It’s relatively easy to go to the hospitals’ websites within your community and compare capabilities. If there is an NCI-designated Comprehensive Cancer Center in your community (which differs from an NCI-designated Community Cancer Center), and have not selected it as your provider of choice, you may wish to get a second opinion at this facility. If you have an early stage, easily treated disease, this may be less of a concern than with more advanced or difficult to treat tumors.
· Be careful about listening to the advice of your backdoor neighbor or cousin Martha about who the best doctor in town is for your cancer. Their intentions will undoubtedly be spot on, but their knowledge may be highly flawed. Author Marty Makary, M.D., a Johns Hopkins physician, talks about Dr. Hodad – a popular physician with a wonderful bedside manner whose patients think he walks on water (HODAD turns out to be an acronym for hands of death and destruction).
5. Never under-estimate the power of hope in helping get you through the journey. Though no one welcomes cancer into their life, a great many people experience tremendous growth as a result. Hope can be the force that helps you emerge on the other side…stronger, more resilient, and with a unique appreciation for the wonderful life you’ve been given.
There are many more steps to transforming an arduous journey into a manageable one. What I’ve outlined here are five of the most basic. If you would like to read more, I would strongly encourage you to read: After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead.
The book is available at Amazon.com (http://www.amazon.com/After-You-Hear-Its-Cancer/dp/1442246251/ref=sr_1_3?ie=UTF8&qid=1423064996&sr=8-3&keywords=john+leifer#) or through the publisher – Rowman & Littlefiel (https://rowman.com/ISBN/9781442246263).
I would welcome your questions or comments. Please post them by clicking on the headline of article.
[i] Regina Brett, BrainyQuote, http://www.brainyquote.com/quotes/quotes/r/reginabret586752.html.