Hearing the words “it’s cancer” can turn your world upside-down. You may feel overwhelmed, angry, scared or oddly numb. Know that you’re not alone: Each year, 1.7 million Americans receive a cancer diagnosis. And about 15.5 million Americans ― your schoolmates, neighbors, coworkers, relatives ― are cancer survivors. We reached out to some of them to learn what simple actions you can take to position yourself to fight your best fight. Because sometimes just having a plan can be a relief, especially when there are so many other unknowns.
The advice we gathered fell into two areas: First, rally a support network so you don’t have to carry this burden alone. Then, learn some tricks for managing the flood of thoughts and new information swirling around your brain. We hope the tips below help you do just that.
Assemble your “A-team.”
The A-team refers to a group of elite fighters or top advisers committed to a common goal. Your A-team will be made up of your oncologist, other health care pros, perhaps a therapist, and loved ones you turn to for logistical and emotional support. Here are four roles that can make the biggest difference in your cancer journey.
A trusted ally you bring to doctor appointments.
For Christina M., who was diagnosed with thyroid cancer in 2010, having her husband with her at nearly every appointment was crucial. “When you first get the diagnosis, you go into a Twilight Zone state,” Christina says. “My husband helped keep me strong. And when there were things my doctor said that I forgot, he always had it in his notes.” Besides acting as your backup memory, a friend or family member can ask questions on your behalf and advocate for your care.
The best person for this role isn’t always someone close to you, and that’s OK. It’s more important to choose someone you trust who’s a good listener and has a calming influence on you. Health care knowledge and experience are a big plus. Laurel J. was diagnosed with breast cancer in 2012. Without family nearby, she asked a social worker she’d met after she went on disability, to accompany her to doctor appointments. “I was already meeting with her on a regular basis for help with daily living, and I valued her opinion,” Laurel says.
An oncologist you feel comfortable with.
Your oncologist will be an important partner in your cancer treatment journey. So it’s vital that he or she listens to your concerns, encourages you to ask questions and explains things in a way you understand. If you decide to seek out a new doctor, your health insurance provider may be able to help.
Patient navigators and care managers.
Many medical centers employ staffers called patient navigators to help you cut through the complexities of cancer treatment, at no additional cost. These experienced pros can book appointments and answer questions about your condition and treatment options. Ask your oncologist if your medical center offers patient navigators.
Some health insurance providers offer care managers who perform a similar role, also for free. “Treatment can be convoluted,” says Michelle Majoy, a nurse and Aetna care manager. “You may have multiple visits for CAT scans, biopsies, surgery, radiation and chemotherapy. We look for opportunities to improve your treatment experience and your health.” Michelle checks in with her patients regularly, advising them how to deal with the side effects of treatment or providing reassurance. Call your insurer and ask to speak with a nurse about your cancer diagnosis.
A professional counselor, if you need one.
Cancer treatment can mess with your mood and self-esteem. Don’t try to tough it out: Stress, depression and anxiety can have a negative influence on your physical health and slow your recovery. Your doctor can help you find the emotional support you need. Learn more about the link between physical and emotional health .
Shara Sosa, an oncology therapist, underwent lung surgery for synovial cell sarcoma in 2014. Accustomed to playing the role of caregiver, Shara didn’t realize at first how much she needed a deeper kind of support. Then Aetna assigned her a case manager, Stephanie, to help her navigate her recovery. “Whenver I was worried about something not working out, I would reach out to Stephanie and she was on it,” Shara says. “Stephanie provided me with a level of comfort that no one else on my health care team could provide.”
Manage the flood of information.
You’re entering a whole new world of medical specialists, complex terms and treatment options. Survivors refer to this stage of their journey as CIO, for Cancer Information Overload. Setting up a system to manage your health records can help. So can delegating tasks to loved ones, and setting aside time to process your experience.
Start a file to organize your medical records.
Whether it’s a binder or a computer folder, designate one place to store all your health documents. Make sure to include key information you’ll refer to again and again:
- Your cancer care team. Note names and phone numbers. You may want to enter them into your phone’s contact list too, so you don’t have to look them up each time.
- Medical and pathology reports
- Questions for your doctor. Write these down before your appointments.
- Appointment summaries. After each medical visit, ask your doctor to print out of copy of his or her summary.
If you’re digitally inclined, apps like CancerAid (free) can be helpful for organizing this information.
Be selective about when and with whom you share your diagnosis.
Sharing your condition with a wider circle opens you up to a deluge of well wishes and information. This can be a mixed blessing. Before you have a full diagnosis and treatment plan, unsolicited advice can be distracting at best, alarming at worst. Consider limiting with whom you share this information early on to your inner circle. As your treatment progresses, you can widen the net to maximize your potential support.
Make time along the way to process your experience.
When faced with a cancer diagnosis, some of us take time off work to get our head straight and make preparations. Others continue working and maintaining our routine as a welcome distraction. Whatever your coping style, make time now and throughout your treatment to process your experience, focus your energy on your own needs, and prioritize your cure.
Some cancer survivors describe doing a “life edit,” letting go of any obligations and people that may get in the way of a smooth recovery. In that spirit, consider appointing a friend or family member to serve as your “communications officer.” This person can update others on your progress, freeing you of the responsibility of responding to questions one by one. This is especially important if you have a large family or network of friends whom you want to keep updated.
The early days after a cancer diagnosis are full of uncertainty. Just remember that you have an army of supporters by your side, from your loved ones to your health team to those 15.5 million cancer survivors. “I’ll never again be the person I was prior to February 4, 2016,” says breast cancer survivor Shawn Love . “But I’m alive. Here I am.”
About the author
Sachi Fujimori is a writer and editor based in Brooklyn who focuses on writing about science and health. A good day is one where she eats her vegetables and remembers to live in the moment with her baby girl.