Working with an Oncologist - Advice from an Inflammatory Breast Cancer Survivor
"I feel my oncologist just drops me like a hot potato when the symptom isn't cancer related," wrote a woman on a support website I belong to. I've had three oncologists with three distinct personalities. After working with them and talking to lots of cancer patients I've learned to be realistic in my expectations.
Oncologists choose their specialty to fight cancer. If you are seeing an oncologist at a comprehensive cancer center, then your doc also wants to research the causes and treatments for cancer. Like any other group, oncologists vary in their ability to communicate and relate to people, but they share their focus on helping patients beat cancer.
Your oncologist and the office staff have to keep enough emotional distance to maintain a long career working with patients who will frequently die no matter how compassionate they are. Their only hope of helping you is to know the medicine. So if you have a doctor who is good at showing kindness and compassion, give thanks; but a good bedside manner is not the most important quality to look for.
You can expect that your oncologist will be knowledgeable about chemotherapy and treatments like Herceptin or hormone therapies. No matter how busy the office is, your oncologist should take the time to answer your questions. Write them down ahead of time, so that you don't forget any. I learned to stop my doctors as they were about to leave and say, "Wait! Let me look over my list of questions."
Your doc should be able to explain how your treatment will work, possible side effects, and why he or she is recommending that treatment. One of my doctors was especially good at giving me the source of the studies that she was using to make decisions, and telling me how to find the studies so that I could read them myself.
If you like explanations, and your doc acts like you are questioning his judgment when you ask for them, then you should consider looking for another doctor.
I was amazed at how narrow a doctor's knowledge is. My surgeon had only the haziest understanding of what the oncologist would do, and the oncologist didn't get the details of the radiation treatments right. So I learned not to expect one specialist to understand what the next specialist was going to do.
Oncologists' focus on saving your life sometimes leaves them apparently uninterested in treating the side effects. If it isn't going to kill you, they may seem uninterested When Taxol left me with tingling toes and fingers, my onc just said, "Oh yes, you've got Taxol toes." She did answer some of my questions about it, but it wasn't until I was seeing a neurologist for another problem that I found a doctor who was interested in trying an assortment of treatments to try to fix my problem.
Ask for a referral to another specialist for problems with side effects from treatment and any health problems that aren't cancer-related. Try to get the docs to talk to each other because sometimes treatments can interfere with each other. Your new specialist isn't going to be up on the research about your cancer treatments.
You can expect that your doctor will fight for your life. If your doc tells you nothing can be done, find another doctor. I've known many women who are alive five and ten years later because they found a doctor who was willing to try a new aggressive treatment after their first oncologist offered them no hope and no treatment
I've had much better relationships with doctors since I learned to tell them at the first meeting, "I am the kind of patient who has a lot of questions and who likes explanations." Let your doctor know what you want. Some people live in remote areas where there is not choice of doctors, but most of us can change if the first doctor is a really bad fit for us. Remember the doctor works for you.