"Advocating for Yourself"
(Part 1)
Undoubtedly, you chose what type of vehicle you drive and what career you pursued. You choose where you live, how you live, and most other aspects of your life. So why, when it comes to your medical care, do you relinquish all authority to another person? Yes, your doctors may have many more years of schooling than you do, but that does not necessarily make them best suited to determine major life decisions for you. This is true since no doctor can know everything about all types and sub-types of cancers; and they don’t know you! Perhaps you will want the suggested protocol to be delayed temporarily in order to accommodate your personal needs. (For instance, in one month you retire or have a family graduation or wedding, etc.) Cancer treatment is not a one-size-fits-all, so you will want to participate in the decisions which so intimately affect you!
How can you most effectively self-advocate for your own medical care? You can start by doing your homework! You will want to extensively research your type of cancer. At the very least, this will enable you to ask relevant questions. Then, it will empower you as a patient to understand the range of choices available to your oncologist and/or surgeon. Of course, you can’t acquire a medical degree in a couple weeks, but there are ways you can do very specific research applicable to your situation. Learning about procedures in advance has several positive outcomes. 1) You will feel more comfortable in medical settings as you become familiar with medical terms and optional protocols. 2) You will be able to address issues you may have known little or nothing about previously so you can take charge of your future. For example, after reading about problems with reconstruction, you can ask pertinent questions about expanders. Also, you will know to ask your surgeon about the failure rate of implants and any possible drawbacks. Then, you will be able to weigh the risks and benefits, making a truly informed choice. 3) By knowing what to expect you can reduce your anxiety. For instance, I was told that after a mastectomy drains were left in for two weeks. If I had done my own research, I would have learned there is a wide range of “normal” for drains. Instead, I was frustrated when I had to change plans multiple times since mine drained for five weeks! Being well-informed helps us to have a less stressful experience.
Begin research with credible sites such as universities or cancer organizations. The more scholarly web addresses usually end in .org or .edu. A database called PubMed publishes abstracts of articles from medical journals. It is easy to search; type in a word and get dozens of helpful results. I typed in mastectomy and got an extensive list of excellent articles. For example, I learned about a procedure called “nipple sparing.” Turns out that’s one term I didn’t need to know since my surgeon explained multiple options and did not simply dictate plans for me. When he asked if I had any questions, in response, I pulled out a typed list about the length of a kid’s Christmas list. I knew I had chosen the right surgeon when he wasn’t fazed. In fact, he said he welcomed questions. I will always be thankful for the time he took with me to answer everything to my satisfaction. However, some doctors may not be as eager to spend time fielding questions, or you may not understand an explanation if you are hearing it for the first time. So it is wise to gather information on your own.
To better advocate for yourself, join more than one support group. I have learned so much by hearing others’ stories. I learned about the many facets of a cancer journey, beyond medical considerations. I realized I hadn’t considered the emotional impact on my family. I learned how others handled relationships and how one’s life can be altered in many ways in addition to physically, such as financially. Personally, I recommend joining at least two online support groups in addition to one local. A local one may feel more personable and welcoming, but online ones offer the benefit of numbers. There are thousands of people to glean information from and find parallel experiences with. Daily, ladies will express confusion about some treatment, and although we do not give medical advice, we can steer people in the right direction. To illustrate my point, recently a lady asked why many of us were mentioning a blood test prior to chemotherapy. She said her oncologist didn’t test her blood before treatments. Within the hour, 43 ladies had chimed in that their oncologists wouldn’t do a treatment without knowing the white blood count and other factors to determine if their body could handle the infusion. I shared that one time my white blood count was so low my chemotherapy was cancelled and I was sent for a blood transfusion. So simply by sharing our own experiences, we educate others. One of the more frequent comments is, “Get a second opinion.” Most of us veteran cancer patients now know what “best practices” look like. Further, your doctor has not experienced cancer and the ladies in a support group have. They know first-hand what you are going through. That creates a beautiful sisterhood for sharing.
As cancer patients we certainly ought to respect the initials after our oncologist’s name. Also, we may assume the doctors know more medical facts than we do. What we cannot and should not assume is that every doctor is an expert on our specific type of cancer, has read the latest research on it, and is familiar with the newest clinical trials available to us. Even if your doctors stay current, they may not be conversant with other areas, not in their field of expertise, which could impact your health during your cancer treatments and long after. For example, how much do your doctors know about nutrition? Have they addressed the subject of a healthy diet with you? Doctors typically have very little or no training in nutrition in medical school. Yet, our diet plays a major role in maintaining good health. As Hippocrates said: “Let food by thy medicine and medicine be thy food.” Understanding nutritional needs, especially during cancer treatments, is just one example of why you need to do research and take an active role in your own care.
Another reason to become an empowered patient, participating in your own treatment decisions, is that the doctors advising you do not really know you—your priorities and your values; nor do they know how your body will react to treatments. Through chemo or radiation treatments, your doctors may be willing to reduce your quality of life to a degree you do not find acceptable. Therefore, you are uniquely qualified to offer critical input about the type of treatment and the quality of life you desire.
Reflection:
How did you find caring people to share with? Did you join a support group?
Did you or do you feel overwhelmed trying to research a cancer diagnosis?
Is it difficult for you to trust physicians with major decisions? Why?