Each of you will have a slightly different experience as to when you need to gather information, for example, if you are having a mastectomy and have to consider immediate versus delayed reconstructive surgery. However, for simplicity’s sake, I will discuss the entire research and information-gathering process here in this section. It might turn out to be a few pages that you come back to time and time again.
The critical point to remember is that while you are the ultimate decision maker as to what does or does not happen to your body, in the end, you must have faith in and be comfortable with your doctors. You can do research until the cows come home, but your doctors have dedicated their lives to this topic, so you will never match their expertise, experience, and insight. All you can hope to do is gain a basic understanding to feel comfortable with their recommendations. If you aren’t comfortable, ask for explanations until you are. If you don’t receive satisfactory explanations in jargon-free, nontechnical English, maybe you should consider another doctor, one with whom you can develop a stronger rapport.
Time Doesn’t Stand Still, but It Will Pause for a Few Weeks.
This research phase may seem more ominous than attempting to read an entire semester’s syllabus two days before the final exam. You’re paralyzed as to where to even begin, and you’re sure that the cancer will grow exponentially inside you by the hour unless you have surgery tomorrow. Relax a bit. Most of the medical research suggests no variation in survival rates or treatment efficacy as long as you begin treatment within four to six weeks. So, take a couple of weeks to get all the information you need to feel comfortable with a decision, and then let it settle in for a week or so, as you’ll be living with this decision the rest of your life. By all means, don’t dally, but consider it nature’s reprieve, or time well spent, so you’re intellectually and emotionally ready when treatment begins.
Rationalize the Mortality Statistics : Consider It Healthy Denial.
No matter what stage your diagnosis, Stage I or Stage II, you will become terrified when you start to look at the mortality statistics associated with each. Overall, the statistical probability is that you will make it to the five-year survival mark, but you sure don’t want to be one of those statistics that doesn’t. Furthermore, you are not a statistic but a person. Statistics are necessary landmarks that doctors use to make treatment decisions among thousands of patients, and they may not be reflective of how your particular case unfolds.
Find your own coping mechanisms to convince yourself that you will fall into the survivor group. What I did was take comfort in my otherwise healthy lifestyle. I convinced myself that the minority of women in Stage I or Stage II who don’t make it to the five-year survival mark must be smokers, drinkers, overweight, already 98 years old, or had some other chronic condition that contributed to their poor prognosis. I also reminded myself that any study I read must be at least five years old to have had sufficient data to publish, and the medical world knows more every year about treating breast cancer—and a lot more than they did five years ago. In fact, according to annual statistics compiled by the National Cancer Institute and the Centers for Disease Control, 1996 was the first year in more than thirty years that the death rate from breast cancer actually declined, attributed to more widespread screening to identify cancer early on, and more effective systemic treatment at the early stages. So, the statistics five years from now—when they’re important to us—will look even better. Consider whatever rationalization you come up with your own form of healthy denial.
Read, Educate Yourself, and Ask So Many Questions That You Drive Your Doctor Nuts.
The single most influential determinant of getting the best care and treatment is you. Educate yourself. Read everything you can handle, at whatever stage you can handle it. (See pages 39–44 for some helpful reference books and association materials.) You’ll know when you are emotionally ready to read the harsher, more clinical material. Some may be too scary too early on. Put yourself on a somewhat level playing field. Write a list of questions to ask your doctors. You’re paying a lot of money for their expertise, so educate yourself enough to hold an intelligent discussion. Tap all the knowledge you can and utilize it well. Then, together the two of you can decide what’s best for your otherwise healthy body, your disease state, and your emotional state.
Find a Collaborator If You Need Some Heavy Lifting.
If you find that you just can’t focus on or absorb any reading material right now, or you just don’t want to do it, enlist the help of someone from your inner circle to sort through research for you and bring you only the information relevant to your decisions. Some women find this an excellent way to involve their spouses in the process. If the man in your life fits the stereotype of being more comfortable solving problems than dealing with emotions, research is perfect for him. It will make him feel that he is helping to solve the problem in a rational, practical way. Alternatively, some women turn to family members or friends who are medical professionals, and most likely have access to resources and can grasp medically technical language. Or if you know someone who is a survivor, she may be able to jump in and even provide research shortcuts as she already knows where to look.
There’s Much More to a “Second Opinion” Than Just an Opinion.
If you don’t get the information you seek or satisfactory responses in consulting with an oncologist as to how to treat your disease, get a second opinion (and sometimes even a third, as a tiebreaker if there is a discrepancy between your first two). A thorough, comprehensive second opinion will most likely include the following:
• A review of your complete medical history, even beyond breast cancer (to determine if there are any considerations that might affect treatment decisions).
• A full physical exam.
• A review of the “slides” of your tumor, or microscope slides containing slices of the cancerous tissue removed, which are evaluated by a pathologist.
• A review of any X rays or imaging studies, such as mammograms or sonograms, by a breast radiologist.
• A detailed proposal for a treatment plan.
. . . But a Thorough Opinion Results from Providing a Thorough Medical Portfolio.
To aid your doctor in giving you the most comprehensive, detailed opinion possible, you must be well prepared. Make sure you bring all relevant medical reports, including:
• All pathology reports and slides (pre- and postsurgery).
• All radiographic materials, such as mammograms, X rays, CAT scans, etc.
• All lab reports from routine tests, including blood tests.
• Any reports from other medical conditions that you think might affect your treatment (if in doubt, bring it).
If possible, get as much information as you can to the doctor ahead of time in order for him or her to review before your appointment. Offer to fax copies of written reports a couple of days ahead. But never send original films or slides. Keep those in your sight at all times. Pick them up from the originating institution and carry them with you to any other consultation.
Be Aggressive.... Isn’t That What Sports Coaches Always Tell You?
If you’ve ever competed in any sports in your life, your coach has always told you to “get out there, be aggressive, just do it.” (Yes, Nike has made many millions off those last three words.)
And now you have your health care team most likely telling you to “Be Aggressive.” Why? Why would they want you to undergo unnecessary trauma if there’s a chance you were cured with surgery? Fast-forward five years. Don’t you want to be able to look back at your treatment protocol and say to yourself, “We did everything possible at that time to make sure that my cancer