Ok, I have cancer. Now what?
A cancer diagnosis can be overwhelming. Perspective and priorities change overnight. Making complex decisions and retaining important information can be difficult during this stressful time. And, it’s challenging to even know where to begin on this new journey.
“Take it slow,” says Julie Stephenson, the Breast Care Navigator at Providence St. Patrick Hospital in Missoula, Montana. “And take control of your diagnosis.” Start an open dialogue with your care team. Communication is key to making good choices. To get you started, here are questions to consider asking your cancer care team.
Get informed and manage your diagnosis – at a speed that makes you comfortable. “Remember, you are in charge,” says Julie. “Focus on the facts and the useful information to help you understand your diagnosis.” Maybe begin by asking your care team these questions:
- What type of cancer do I have?
- Where did it start? Has it spread?
- Can my cancer be treated?
- Can my cancer be cured?
- Do I need other tests or procedures?
“Think about getting a second opinion if you feel uncomfortable,” says Julie. A second opinion is a reasonable request. Doctors understand this choice and the value of a second opinion. They may even suggest doctors you can meet with.
Cancer treatment is complex and as individual as each patient. It depends on a variety of factors ranging from the type of cancer you have to your personal treatment goals. Ask your care team questions and let them know what you want from your treatment. Understanding your treatment options, effectiveness, side effects and how it will affect your quality of life will help you develop a plan to suit your needs. Consider asking:
- What are my treatment options?
- What will my treatment accomplish? Will it treat my symptoms or cure my cancer?
- What are the possible side effects of my treatment?
- How often and for how long will I need to receive treatments?
- Is it okay to miss a few treatments if I have special plans?
- Are clinical trials an option for me? Can you explain the benefits and/or drawbacks of a clinical trial?
- What medications will I have to take in conjunction with my treatment? What are they for?
- What can I do to get ready for treatment?
- How will I know if my treatment is working?
- When should I call the doctor? What symptoms or complications should I report immediately?
How Much will it Cost?
Cost of care is also a real concern for many patients. “Ask how much your treatment will cost and if your insurance will cover it,” advises Julie. “And request a meeting with the cancer center’s financial counselor and social worker to determine what programs for financial assistance are available.”
In addition to financial services, find out what other social services are offered. “Social services may include lodging for out-of-town patients and their families, as well as transportation to treatments,” says Julie. “Cancer affects both the patient as well as their caregivers and family. Meeting with the social worker or participating in support groups can be a lifeline, especially early on in the diagnosis.”
Who’s in Charge?
Also consider asking who is in charge of my treatment plan? Cancer treatment is often a team approach and involves a number of providers. It can be confusing pinpointing exactly who is managing the overall process. So simply ask and find out.
“Typically, your medical oncologist is the provider who monitors your treatment plan for the next few years,” says Julie. “While your surgeon and radiation oncologist provide treatment and follow-up early on in your diagnosis.” At different times there may be different specialists managing your care.
- When can I return to work?
- Can I exercise? Which exercises are best for me?
- What should I do if I’m having trouble with anxiety, sleeping or concentrating?
- Are there any food or drink restrictions associated with my treatment and/or diagnosis?
- Will I lose my hair from my treatment?
- Can I expect to gain or lose weight during my treatment? How much?
Keep a notebook of questions: And keep this notebook or e-tablet handy. You’ll likely think of questions throughout the day. Be sure to jot them down as they come up. Bring your notebook to your appointments. And, if it’s helpful, write down notes from your conversation with your doctor and other members of your care team.
Record your medical history: Organize your medical history prior to visiting your physician. “Keep a record of past surgeries and medical problems,” suggests Julie. “Remember to include any prescription and non-prescription drugs you take, potential allergies, family history of cancer, exposure to chemicals, tobacco, alcohol or radiation, changes in your body or symptoms you have noticed over the past year.” Bring your notes to your appointments – the more your providers understand about your personal health history, the better they can plan a treatment to suit you.
Get a copy of your pathology report: Your pathology report and lab report drive more than 70 percent of the decisions about your cancer treatment. Every line item in those reports is critical for your personalized treatment plan. It will help you to know the details of the diagnosis when you talk to other health care providers, family and friends and when you search the internet for information.
Bring someone with you: Have a trusted friend, family member or advocate to join you at your appointments – especially during your first few visits when your diagnosis is still unfamiliar. “Bring someone you trust and someone you feel comfortable sharing personal information with,” advises Julie. “And let your friend or family member know your expectations.” Whether they are there as a silent supporter, or to take the lead with questions, an additional set of eyes and ears can help you make sense of the details.
There’s no such thing as a silly question: Don’t feel bad if you don’t retain every detail when talking with your care providers. “Feel free to repeat your question if it wasn’t initially answered or if you didn’t understand the response,” says Julie. Make sure your doctor knows if you’re having a hard time understanding an explanation or are confused by unfamiliar medical terms.
Communication is Key
Remember, there are many unknowns when it comes to diagnosis and treatment. And, your doctor may not be able to give you definitive answers every time. But, keep the lines of communication open so you’ll have the information you need to make the best choices for you.