There are times when I wish my doctors knew what it felt like to have breast cancer, not that I would wish cancer on anyone. Then there are insurance companies—they don’t seem to recognize the emotional impact of hearing, “You have cancer.” I wish our system allowed oncology doctors to spend more time with patients. Looking back, the nurses and physician assistants (PAs) spent more time with me than the doctors—because insurance allowed it. This is my health care wish list below. What is yours?
Doctors should have more time with patients. I was one of those patients who had a ton of questions for my doctors. My PA and nurses answered my questions or said they had to check with the doctors and get back to me. That process and time delay was stressful to me during active treatment.
Get the cancer team to talk to each other and function as a team. Two of my team doctors gave different answers to the same questions. Is it wrong to wish they talked to each other about my case? This integration is getting better, but still isn’t where it should be yet, which seems odd with advances like, well, texting and email.
Provide emotional coping tools to the patient. Cancer is a frightening life changer. When I showed emotional distress, doctor support seemed limited. Telling me to “go see a therapist,” or to “join a support group” didn’t feel completely adequate for some moments though both those tools make sense. A moment of compassionate acknowledgement would have helped too.
I did eventually switch to a doctor who had experienced breast cancer herself. What a difference! I have said this before but I remember my eyes filling with tears during one visit, and she said, “of course you are crying, you are afraid for your life.” Finally, it was OK. She got it. I didn’t need to start therapy all over again. I just needed a moment of someone understanding my fear.
Manage patient expectations better on the front end. It isn’t fair to expect doctors to be talk therapists. That is a completely different field than medicine. Doctors are people, too. They can be rushed or preoccupied just like everyone else. Doctors, like anyone else, become accustomed to what they see all the time, even something as terrible as cancer. Don’t blame doctors for “not getting it” because it is a different skill set than surgery or oncology.
I still struggle with fear of recurrence. I don’t like “wait and watch.” Through my cancer experiences, I have figured out the coping tools that work for me. It is an ongoing life process now to manage my emotions around cancer better.
Integrate better public education about cancer survivorship. Wouldn’t it be nice to see the public, including doctors, be more understanding and become more compassionate about the emotional side of cancer and the long-term side effects cancer survivors endure, like neuropathy, lymphedema, sleep issues and emotional distress? I know, I’ve said that before. Sometimes, I feel that as a survivor, these are topics that people around me don’t want me to discuss. I get that everyone around cancer survivors wants them to just get back to normal. We know post-traumatic stress syndrome (PTSD) happens in soldiers when they came back, and we are now learning that PTSD happens to cancer survivors and others, too. I think we will get there. I just wish it were sooner rather than later.