Who controls your health care? Who determines your course of treatment? While conventional wisdom might hold that your physician is in charge, I believe that you as the patient have the ultimate decision-making responsibility. My feelings were confirmed when I looked into James Rhio O’Connor’s fight with mesothelioma.
Mesothelioma is a cancer caused by asbestos exposure and affects either the pleural sac surrounding the lungs or the peritoneal sac that covers the abdominal organs (www.survivingmesothelioma.com). In 2001 at age 61 James Rhio O’Connor was diagnosed with pleural mesothelioma and given one year to live. Both surgery and chemotherapy were considered but discarded because the potential advantages didn’t significantly outweigh the disadvantages. However, instead of giving up, James took control, helped create a personalized treatment plan, and lived 7-1/2 years before succumbing to the disease. There are several lessons we can learn from his approach.
In 2007 I was diagnosed with breast cancer and found myself confronted with a variety of treatment options and the need to determine which path I would pursue. The following are some of the things I learned during that time.
Attitude. Estimates of how long you have to live are simply that – estimates. Similarly, survival rates are averages; some people live shorter periods, some significantly longer. This is one of the circumstances in life when being stubborn is an admirable character trait. A friend told me to always remember that I was a survivor from the minute I was diagnosed, and I’m determined to outlive all the estimates.
Research. The human body doesn’t come with an owner’s manual, and the volume of information available is increasing so rapidly that it’s impossible for any one person to know everything. This meant that I needed to consult a variety of resources. Physicians, nurses, medical websites, and libraries are a good start. Nutritionists and physical therapists also have valuable information to share. Don’t forget cancer support groups, patients and families who can tell you about their experiences and what has and hasn’t worked for them.
It’s essential to keep in mind that you are fighting for your life. There are no rules, and there is no such thing as too much information. You need to gather as much data as possible. If someone tells you that watching comedy TV shows and movies is beneficial, you owe it to yourself to find out why. If they recommend meditation, play detective and find out what it has to offer. If they suggest acupuncture for pain control, investigate their claims.
Your research tools are also important. I prepared a list of the questions I wanted to ask before each of my meetings with experts. I also took someone along who could help with follow-up questions to clarify the answers I received. I took notes during the appointments but also considered using a tape recorder so that I could review the answers later to make sure I remembered the information correctly.
If there’s something that’s unclear, don’t stop asking questions until you understand. Your consent to treatment can’t really be informed if you don’t understand the risks and benefits. The worst possible reason for having a test or treatment performed is “because the doctor said so”.
Organize. All the information in the world won’t do you any good if it’s not useable. I’m most comfortable with paper and pencil, so everything went into a three-ring notebook with separate sections for each treatment modality. If you have more of an electronic bent, maybe spreadsheets and text documents would suit your style. The most important thing is that you do find a method that makes it easy for you to use the information.
Analyze. Next, all the information has to be evaluated. What is the intended outcome for each treatment modality? What are the advantages over other treatments? Can it be combined with other treatments, if not at the same time then in sequence? What are the disadvantages or contraindications? Which side effects do you feel are things you can accept, and which ones are unacceptable?
Plan. It’s important to keep an open mind when selecting the components for your course of treatment. Remember that at some point today’s “standard of care” was just a theory. Another key point is that just as you are an individual, your treatment could be unique. Every person’s situation is different, so it stands to reason that the tools needed to improve that situation may be different also.
Don’t forget that many of the individuals who gave you information and may be partners in your treatment are specialists. Unfortunately, sometimes this specialization can result in a kind of tunnel vision. In extreme cases it may be necessary to remind them that you are not just a tumor, a disease, or even a patient. You are a whole person, and your treatment plan must take that into account.
Assess Results. You should periodically evaluate the results of your treatment. Remember that your opinion is the one that counts. Are you able to participate in all the activities that are important to you? If you have pain, is it a minor inconvenience, or does it control your life? Are the side effects of your treatment tolerable? Has the estimate of how long you’ll survive changed? You’re the only person who can determine if the treatment satisfies the criteria that are important to you. If it doesn’t, then begin the cycle again to determine what changes you can make to improve your situation. In my case, I was satisfied with the purely physical aspects of my treatment but found that we needed to add an antidepressant to help me deal with the emotional aspects.
In conclusion, how you deal with your cancer is up to you. You can be passive and give all control to your doctor, or you can be an active participant. Keep a positive attitude, find all the information you can, organize and understand it, work with your doctors and other health care providers to tailor a treatment plan to fit your goals, and review it periodically to make sure it is doing everything possible to meet those goals. If you can do these things, you’ll be successful in your personal fight against cancer, because you’ll be living your life on your terms.