The next steps after a cancer diagnosis
You just got the bad news: You have cancer. It probably feels like someone knocked the wind out of you (so this is what it feels like to be tackled on a football field!), and the ringing in your ears is so loud your doctor sounds like one of the adults from the “Peanuts” cartoons—blah, blah, blah.
Nearly a third of women and half of men in this country will receive a cancer diagnosis at some point in their lives. And this time—after diagnosis, but before treatment—can be understandably confusing and overwhelming. We sat down with the American Cancer Society‘s Barbara Powe, Ph.D., for her advice on what to do after you receive distressing cancer news.
Black Health Matters: What advice would you give someone who has just received a cancer diagnosis?
Barbara Powe: You have to expect that the next few days, weeks, months you’re going to get a lot of information. You will have to make some decisions. Remember that you’re not alone. Include your family. Have an open line of communication with your provider. Be comfortable seeking second opinions. Really make sure you understand the information. If you need to take a few hours away to digest the information, go home. Think it through. Write down your questions and get back to us.
[When you come back to the doctor] say, “This is so much information. What do I do? Where do I start? Help me walk through this. This is overwhelming.” But you don’t have to do it by yourself. You should rely on family or people around you. And know that there are programs out there designed to help—patient navigators, community health workers, calling an organization like the American Cancer Society or the National Cancer Institute. They can connect you with these programs.
A good place to start would be your provider. Ask, “Hey, what’s out there?” Find out where to go to learn about resources.
You mentioned second opinions. Is it always a good idea to get a second opinion?
BP: Always. Sometimes it’s going to give you peace of mind to get a second opinion from a specialist who sees this every day. They might be aware of other options. They may have other tests to look at that your primary physician didn’t bring to the table. I’m not bashing small hospitals or providers. In some of rural areas they might not have some of the same testing. A second opinion gives you more access to other strategies.
You need to feel comfortable that you have the information you need to move forward. Get that second or third opinion. And then talk to someone who helps you digest—the patient navigator, a family member. You may need to consult with someone to help you move to the next step. But you don’t want this to go on for six, seven, eight, nine months because the cancer could be advancing.
They should know their stage after diagnosis. [Ask] “When do I need to start treatment?”
When should you consult a specialist in cancer diagnosis and treatment?
BP: Right away. After your diagnosis is provided—in that conversation ask about a second opinion and about consultation. Don’t wait.
What qualities should you look for in a doctor?
BP: Obviously you want them knowledgeable about their area. Is it general oncology? Do they specialize in a certain cancer? How long have they been doing this? Are they in an area [of the country] where you can seek other treatment if needed? Do you feel comfortable? You don’t want to feel like you’re a number.
And then you’ll need to think about insurance carriers. If you’re in a particular plan, what’s covered? What doctors are in that plan? That might limit your options, but I certainly wouldn’t let that be my first thought. You want to find somebody who’s going to get the job done.
What should you consider when discussing treatment options?
BP: There are lists on websites with questions you might night think to ask. Some websites have toolkits that say “This Is What I Should Ask.” I would look for something like that. Print it out. Then go to your doctor and ask, “What’s my stage? How have others who have had this cancer done? What treatments do I need? What are my treatment options?” Ask if there’s a critical time when you should start treatment. That’s going to get you started.
Talk about options with your specialist. Ask, “What are the pros and cons of this treatment versus another treatment? How have other patients responded in terms of treatment? Have you had people similar to me? What are the side effects? What’s the length of treatment? What can I expect?” Find out the success rate of this treatment. You’ll also need to check other resources, such as payment and places for family to stay if have to leave your area for treatment.
If surgery is recommended, that’s another set of questions. Type? Pros, cons, time frame, follow up. What should you expect? For breast cancer, for example, you may need to consider mastectomy, prosthesis, radiation or chemo after surgery.
Do all cancer treatments have awful side effects?
BP: They do have side effects. Everybody doesn’t experience them the same way, but the side effects are real. If you happen not to experience them, that’s great. But there are treatments for side effects. There are things you can help do to manage them. If you’re nauseated from chemo, if you hair comes out, knowing ahead of time that this might happen, and then having a plan in place, is very helpful. Don’t suffer in silence. We need more open communication about this. Let your provider know if something is not working. There are other meds you can try for nausea, vomiting.
What—and when—should you tell your employer?
BP: That’s an individual thing. If this is going to make you unable to perform your job, or you’re going to have to be off of work, you need to let your employer know. If you have sick leave or medical leave, check with the policy in the human resources department and find out how the company says you should handle that.
What’s the most important thing to know after a cancer diagnosis?
BP: If we can help our people to know that they don’t have to suffer in silence. There are resources out there. Sometimes you have to dig for them, but they are out there. Help people feel comfortable having these types of conversations with their doctors. Let’s get that second opinion, let’s discuss the options and let’s make an informed decision.