I have spent many years answering questions from friends and friends of friends who have just that week been told they have cancer. The conversations almost always went like this:
Day 1 – You: Today, I was told by a doctor that I have cancer. <<My response: Typically, once you have been given this devastating and frightening news, you end up leaving the office with little or no information.>> You: I couldn’t even think straight enough to know what questions I should have asked. <<Me: Breathe. When you can. begin to use the resources on this website, starting with the videos.>>
Day 2 – You: I call the doctor’s office back and say what should I do now? <<Me: Typically, the doctor says the next step is to make an appointment with an oncologist with the appropriate specialty to treat your type of cancer. The doctor may suggest a specialist for you to see, hopefully one who takes your insurance.>> You: So, I try to make the first available appointment. <<Me: Often you will be told the first appointment is days or weeks away.>> You: What am I supposed to do in the meantime, while I wait for the appointment? I am wondering when to tell each member of my family and close friends. Do I tell them now, or wait? Which one(s) do I tell first? Should I just go to work and pretend nothing is going on, or should I tell my boss and/or co-workers? <<Me: Whom you tell and when is uniquely personal. You will probably want to tell the person(s) who is/are very close to you. You: Maybe I should wait to tell anyone until I know more. <<Me: If you need to talk to someone right now (and most people do), you shouldn’t wait. But warn them that you won’t know the details of your diagnoses for several more weeks.>>
Days 3-21 – You: I have learned that I will have to take several more tests before anyone can give me any answers about how bad the cancer is and what my chances are, whether I am going to live or die, what treatments they want me to get, and where to get them or how long I am going to be in treatment. Should I be doing something while I wait for all this to happen? <<Me: Often, during this time you wish you hadn’t shared this news with anyone, because now everybody is in a huge flap. So, here is what you ought to do: Give them all jobs to help you. Here are some things you, your family, and friends can do while you wait for your tests and test results.
(1) You know at this point at least what type of cancer you have. Ask the people you’ve told to help you find out all the doctors’ offices and cancer clinics and hospitals in your area that treat that type of cancer. Make lists and consolidate them. Why? Because you will be referred to someone to do the initial tests, but that doesn’t mean that you will want that doctor or doctors to take over your care. You have choices to make.
(2) Find out where you stand on insurance, for all possible needs: Do they cover second opinions? Exploratory and reconstructive surgery? Experimental therapies (clinical trials)? Complementary therapies like acupuncture or massage? Physical and occupational therapies? Post-operative and post-treatment home health care? Rehabilitation? Medically-prescribed dental care?
(3) If your insurance has arrangements with only certain local hospitals, cancer centers, labs, and doctors, find out which ones participate in your insurance coverage.
(4) Make appointments with your dentist if you haven’t seen one for some time. Chemo and some radiation treatments may cure your cancer, but they can be murder on your mouth. Start with a clean bill of health.>>
Week 3-6 – You: I have gone in for all the tests they wanted me to have. Now I have an appointment to go in and see the doctor to learn what the tests have shown. <<Me: Write down every question you can think of on a paper to take with you. Take someone else with you to be a second set of ears. Consider asking the doctor if you can record the conversation. Most doctors are willing but like to be asked. That way, when you go back home to your family and friends, they can hear first- hand what was said.