I wish my doctors knew what it felt like to have breast cancer, though I would never wish cancer on anybody, ever. I think I am really making more of a complaint in some ways about insurance companies — I wish insurance companies recognized the emotional impact of hearing, “you have cancer” and allowed oncology doctors to spend more time during the patient visits. When I think about my initial diagnosis and treatments, the nurses and the physician assistants were allowed more time with patients than the doctors.
Newly diagnosed, I had a lot of questions for my doctors. The PA and the nurses wound up answering many of my questions, or having to write them down, check with the doctors, and then get back to me. Sometimes it turned into a lengthy, stressful and time-consuming process.
I wish my doctors knew was how upsetting it was to hear two of my doctors give different answers to some of the same questions. I wish they talked to one other more than they probably had time to do. Integrated medical care is becoming more common every day, but it isn’t where it needs to be yet, especially when the newly diagnosed cancer patient is basically tasked with assembling his/her own medical team.
When I expressed emotional distress like worry and stress and lack of sleep, it felt like the doctor support was pretty limited. Prescribing a sleeping pill that I later had a rebound reaction from when I discontinued it, or telling me to “go see a therapist,” or to “join a support group” didn’t really seem like the responses I needed. I really just wanted a moment of compassion or a human response from someone.
Eventually, I switched to a doctor who had previously experienced breast cancer herself. Whew! What a difference. I remember my eyes filling with tears during one visit and she said, “Of course you are crying, you are afraid for your life.”
Sigh of relief. It was OK. She got it. I didn’t need a therapy session, I just needed a moment of understanding.
Today, I still sometimes have a list of questions for one of my doctors. I still struggle with fear of recurrence. I still am not a fan of “wait and watch.” I have learned about myself and figured out the coping tools that work for me. I have learned and still am learning how to manage my emotions around cancer.
Doctors are people too. They can be rushed or preoccupied just like everyone else. Doctors can, like anyone else, also become accustomed to something they see all the time, even something as awful as cancer. I don’t really blame doctors for “not getting it” because they haven’t had cancer themselves.
It would be nice to see the public, including doctors, “get it” a little more — to become more aware of the emotional side of cancer and the long term side effects that cancer survivors endure — like neuropathy, lymphedema, sleep issues and emotional distress. Sometimes, I feel that as a survivor, these are topics that people don’t want me to discuss. They want me to be back to normal — to be my old self. We, as a society, had the opportunity to learn and become aware of post-traumatic stress syndrome (PTSD) in soldiers when they came back from war and we are now in the process of learning about PTSD and other issues for cancer survivors as well. I think we will get there. I just wish it were a little sooner.