There is one piece of advice that Lori and I offer without equivocation to newly diagnosed cancer patients – slow down…take your foot off of the accelerator, and realize that you’ve begun a journey not a sprint. Though certain diagnoses mandate prompt action, it should never be at the expense of level-headed thinking that leads to a clear understanding of your options.
The Role of a Caregiver
Your first order of business is to identify a caregiver, often times a family member, who will accompany you on your journey. There will be moments when you are unable to process important information about your diagnosis and treatment. That is when your caregiver becomes your scribe – taking notes, recording comments, doing whatever is necessary to retain critical data to help you make informed decisions.
The Right Care Team
The second order of business is to ensure that you are enlisting the right health care resources to give you the optimal chance of a positive outcome. Your cancer care team will likely include a multi-disciplinary array of providers. Physicians, like all human beings, vary significantly in their knowledge, competency, experience, and interpersonal style. Since you are entrusting your health to these individuals, you should get to know them, and feel comfortable with them.
As part of this process, you need to also consider the health system with which your doctors are affiliated. Health systems, too, vary dramatically in their capabilities. If you have a complicated diagnosis or a difficult condition to treat, some systems may be better suited to meet your needs, such as National Cancer Institute (NCI) affiliated centers or more sophisticated community cancer centers.
Understanding Standards of Care
Next, it is imperative that you understand your diagnosis. For virtually every diagnosis, there is a standard of care – pathways that define the optimal methods for treating a disease at different stages of development. As a consumer, there are tools that describe many of these care pathways. You can find them online at www.ncccn.org/patients/.
You will quickly discover that there are often multiple options or pathways for treating your disease. Different treatments may be equally effective in controlling or eliminating your cancer, but vary in other important ways. Take the treatment of Stage 1 breast cancer for instance. A lumpectomy followed by radiation has the same statistical likelihood of curing your cancer as a mastectomy, but is far less invasive, requires little to no reconstructive surgery, costs less, and involves a far shorter recover. Yet, for some very legitimate reasons, many women still opt for the mastectomy. There’s not a right or wrong decision…as long as the patient is truly informed as to the options and trade-offs.
Seeking a Second Opinion
Once your care team has provided you with a diagnosis, including the location, stage, and grade of your cancer, as well as treatment recommendations, it’s time to consider a second opinion. A second opinion may be less critical for early stage cancers that are easily treated than for complicated diagnoses. A second opinion should provide peace of mind that a proper diagnosis has been rendered and appropriate treatment options explored.
When seeking a second opinion, we advise people to consider consulting with a new team of physicians at a different health system. Once again, an NCI-designated center may be a great option if available in your area. Prior to arranging the second opinion, be certain that you have all of your medical records, including diagnostic imaging and other tests, readily available for the consulting physicians.
Discernment and Prayer
Once you have the requisite information about your condition and recommended treatment in-hand, it is time to think carefully about everything that you have heard. Use your caregiver, family, and friends as a sounding board as you work through the best options for you. Once you have discerned the answer, you can put your foot gently back on the accelerator, and pray for a safe journey ahead.
All of these topics are covered in far greater detail in After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead.