"Advocating" (5)
The word patient originally meant “one who suffers.” The noun derives from the Latin verb (patiens) meaning, “I am suffering.” Fortunately, the definitions of words can evolve over time. The term patient now includes the meaning of one who actively participates in their own care. This is a paradigm shift since historically the doctor-patient relationship was viewed as silencing the voice of patients. Today, though, the goal of caring professionals is to put patients at the center of healthcare. To do so improves the patient’s satisfaction, and it also improves outcomes! As a patient, there are ways you can contribute to your healthcare, resulting in a better experience. Self-advocacy begins when you decide to learn all that you can about your disease. It continues as you give value to your opinions and feelings. Self-advocacy is put in to action when you pause for careful consideration before taking part in decisions affecting you.
First, you need to become a student again. No tests are required, no papers will be graded, and there are no tasteless school lunches, but research is essential! This is a difficult task because there are so many false claims on the internet. Avoid sensational claims of cures and apply critical thinking to every new discovery. On the other hand, it could be a loss to discount all alternative protocols. It seems to me that some things work for some people, some of the time. Perhaps it is the placebo effects in a few cases, but numerous cases of remissions without traditional treatment cannot be explained so easily. Be wary of getting frustrated. When I first started researching, I initially became more confused until I could spend time separating out the valid information. I never realized I knew so many people who had heard of a cure for cancer! Since these friends aren’t winning the Nobel Prize, I eliminated the anecdotal evidence. Then, if the information really was factual and current, I had to check if it was applicable to my case. For example, I heard about a couple new therapies, only to learn it was not being used for my type of triple negative cancer. So researching does take time, commitment, and discernment.
Arming yourself with information is empowering. For example, knowing standard protocol is important in cases where your doctor is deviating from it. If you already know best practices, you are able to judge the merit of what you are being told to do. A woman named Linda in a support group of mine is an excellent example of how to avoid an unfortunate experience by speaking up! After Linda’s lumpectomy, her surgeon said her oncologist should be contacting her about having an Oncotype DX test. (This genomic test analyzes whether you are likely to benefit from chemotherapy.*) Instead, her oncologist ordered her to start chemotherapy! Knowing she should have an Oncotype DX test first, Linda declined and got a new oncologist who ordered the test. Since her score was a 3, chemo was not indicated. If Linda had not been willing to advocate for herself, she would have endured months of debilitating chemotherapy with absolutely no benefit.
Sometimes using the phrase, “go with your gut feeling” is misconstrued to mean you know better than medical professionals just because you are the patient. Feelings can be wrong. However, if you know in your heart something is not right, you need to stand up for yourself. Give respect to the medical opinions of physicians, but also trust your intuition about your own body. For example, I’ve read more than a dozen cases where women were told that they were fine. Their mammogram showed no suspicious spots. Yet, the women felt something “wasn’t right.” Some trusted the scan to never be in error. Then when they went back a year later, they discovered they had progressed to an advanced stage of breast cancer. Others knew to keep pushing for a better scan such as an MRI and found out they did, indeed, have breast cancer.
To advocate for oneself by simply taking the time to reflect and think through everything, sounds so simple. Yet, many fail to pause before making a choice. They become panicked and rush into major decisions which will have long-term effects. If we could just pause—perhaps wait for as little as a couple days—we could gain peace of mind and move forward with confidence about a decision. My husband and I actually made two columns on a paper and listed pros and cons for some choices. When the right thing for us to do became clear, we felt more relaxed and able to cope. Few medical decisions are so urgent that patients will not benefit from waiting a brief time to gain the self-confidence that will put their mind at ease throughout their experience.
Self-advocacy is work, no doubt about that. However, it is worth the effort to be able to understand what is happening to you, reduce feelings of helplessness, and converse knowledgeably about cancer. Three steps enable you to become your own advocate: 1. Learn all you can. 2. Accept your feelings as valid. 3. Take time to carefully think through decisions before you act.
As a patient you do have a voice. Let it be heard.
Reflection:
1. Do you feel overwhelmed by too much information on the internet with many widely differing opinions? Where can you turn for help understanding your diagnosis?
2. Are you living in panic-mode or proactively trying to learn enough to help inform your decisions?
*Not all cancer types benefit from this test. If you have early-stage invasive breast cancer, the cancer is estrogen-receptor-positive or if you have DCIS, and there is no cancer in your lymph nodes, this test is predictive of the likelihood of cancer returning. Thus, you know if the cancer has a low risk of recurrence (a score of 18 or under) then the benefit of chemotherapy is small and will not outweigh the risks of side effects.