"Advocating" (2)
I no longer need to go to the library to check out a horror story. I can read them almost daily on any of my online cancer groups. The blatant disregard for patient’s feelings by medical staff, the errors by hospitals, and the lack of information-sharing by some physicians is disturbing. As a participant in several online cancer groups, I am saddened to read heartbreaking accounts of women’s experiences with medical care, or more precisely, the lack thereof. Referring to a procedure or side-effect, multiple women ask the group, “Is this normal?” It is disheartening to realize their physicians had not discussed expectations with them.
Let me hasten to add, like in any profession, there are thousands of capable and caring people. My goal is certainly not to bash anyone in the medical field. My point in sharing stories is to bring you the awareness of needing to advocate for yourself. Even in the best of circumstances, the more you know, the better able you are to manage your feelings and future. When you have cancer, knowledge truly is power!
The people posting in my cancer support groups may not be representative of the larger patient population since the ones more likely to post are those experiencing difficulties. Even so, why is there any percentage of cancer patients who have to battle not only their disease, but their medical professionals also? In response to many questions, others, as well as myself, would often advise, “Get a second opinion!” Though we didn’t offer actual medical advice, we certainly recognized inadequate care. To be fair, sometimes care is adequate for the vast majority of cases. However, when a rare case occurs, some physicians don’t have the expertise to diagnose.
I read in a cancer support group on Facebook about one extreme example of advocating for oneself. Jane* ended up even having to diagnose herself! Jane had trouble breathing, so her doctor ordered a chest X-ray which came back as a possible spread of breast cancer to the lungs. Her oncologist ordered a full body PET scan to determine where the cancer had spread. Every part of her body “lit up,” indicating cancer was everywhere. The radiologist report said stage 4, cancer. Her oncologist called her to say she had six months to live and to get her affairs in order. In the meantime, her surgeon also called to say she had stage 4 cancer. Jane had a feeling she couldn’t shake that this was just not right. She took her scans to a renowned oncologist. This doctor was more insightful but was unable to offer a diagnosis either. He was honest, though. As he viewed the scans he said, “I don’t know what I’m looking at, but I know I’m not looking at cancer.” So she used Google, asking what would make a PET scan glow. Another person had asked the same question and got the answer that it likely was an autoimmune disease, Sarcoidosis. Jane asked her oncologist to do a biopsy of a lymph node. Sure enough, it was diagnosed as Sarcoidosis. Jane later discovered none of her doctors were capable of reading scans except for her new oncologist. The doctors had only read the radiologist’s report with the assumed diagnosis. She recounts this story years later as she is doing well.
For an example of why it is wise to get a second opinion, I recount Joan’s story. After a PET scan showed lung cancer (she already had breast cancer), her oncologist decided her cancer had metastasized and wanted to start chemo right away. She sought a second opinion. The second oncologist asked why she hadn’t had a biopsy! He ordered one and they found her lung had a different type of cancer. Therefore, her chemo treatment would be entirely different from her breast cancer. Thankfully, she didn’t begin a course of ineffective chemo.
People in any profession make mistakes. As a teacher, when I made a mistake, I erased it from the board. Because mistakes in your health care can’t simply be erased, it is important to advocate for yourself by checking everything: paperwork, dosages, treatment directions, results of tests, and more. Violet shares her experience which demonstrates the importance of double-checking. Violet’s oncologist decided her chemo dosage needed to be adjusted. When she went for her infusion, she checked the dosage. They had not changed it. When questioned, the nurse said Violet must be mistaken. The nurse had no orders to change anything. It took an hour to sort out the miscommunication, but they finally got the correct paperwork. The saddest part of this incident is that a cancer patient is accused of being wrong and in a weakened condition has to defend herself. Thankfully, she stayed firm in advocating for herself.
My personal story does not have such a positive outcome since I once failed to advocate for myself and accepted that a woman working in a doctor’s office must know more than me. I had a toe infection and the doctor at an urgent care facility ordered a blood test. The nurse approached my mastectomy side. I asked her not to use that side. She began to question me. “How long since your surgery?” I told her it was one year ago. “Oh, you are fine to have procedures now,” she casually assured me. Her brisk efficiency in sky-blue scrubs evoked an image of a surgeon, lending an air of authority to her. I assumed she knew the recommended timeline. Later, I researched when it was acceptable to use the arm on my affected side for blood draws. I discovered suggestions ranging from five years to never. What happened? Unfortunately, I got lymphedema. There is no cure. So it serves as a continual reminder to educate myself and to always advocate for myself!
It’s reasonable to respect people in lab coats, but we need to follow what we know is right for ourselves. Patty’s experience illustrates this point. She asked her primary care doctor for an annual mammogram. She said Patty didn’t need one any longer since she was 70 years old. Patty reminded her that breast cancer runs in her family. Still, the doctor insisted she did not need a mammogram. Patty finally quit arguing and was able to get a mammogram without a referral. The results showed suspicious for cancer. After a biopsy, Patty’s doctor called her and said: “Oh, it’s nothing; just stage zero in situ.” Then Patty received her own copy of the report which indicated cancer, stage 1b. Patty got another physician and never went back.
From these brief examples we learn several different ways of advocating for ourselves:
o Do your own research and stay informed about specifics which affect you.
o Get a second opinion. If the second is the same as the first, you have confirmation. If the opinion is different, get a third opinion!
o Double-check everything for yourself. If you have chemo-fog or feel uncomfortable questioning others in a professional setting, bring a friend or relative to advocate for you.
o Get directions and lists of possible side effects in writing to review when needed.
o Question everything! Get a hard copy of all your records and reports so you can read them, yourself.
o Trust your instincts. Do what you think is right for you.
*All names have been changed.
Reflection:
1. Do you find it difficult to advocate for yourself when a knowledgeable physician is suggesting what you feel is not right for you? Do you see self-advocacy as disrespectful to others? (It is not.)
2. Do you have the time and the presence of mind to research, read, and understand cancer treatments? If not, I suggest you ask people to help you navigate this complex world.
(To be continued in Part 3)