Written by Oncology Nurse Navigator Kristi Stetson
Learning that you have cancer is overwhelming. The days and weeks that follow are filled with uncertainty and mind-boggling amounts of information for you and your loved ones. Empower yourself and your support circle by seeking out helpful resources and opportunities that nourish your mind, body and spirit.
Here are some suggestions to help get you started:
- Learn the specifics of your diagnosis. Find out the type of cancer, where it originated from, whether it’s slow growing or aggressive, and whether it has spread to lymph nodes or other organs. What stage is it? Is it hereditary?
- When researching your cancer diagnosis and treatment, make sure you are using reliable sources that are based on evidence, such as: National Cancer Institute, National Comprehensive Cancer Network, and the American Cancer Society. Empower yourself with reliable information so that you can make informed decisions about your cancer treatment(s) and healthcare moving forward.
- Appoint a loved one as the primary communicator who will update your network of family and friends. It can cause more stress on you if well-meaning loved ones are contacting you repeatedly to get updates on how you’re doing. Relaying what you want your network of family and friends to know through a point person will reduce stress and keep you from having to repeat the same information over and over. Having your point person send updates through group emails or group texts is recommended.
- As you assemble your cancer care team, look to your primary care/family doctor for recommendations or referrals to cancer specialists. Talk to family members or friends who have had cancer and ask for recommendations. Sarasota Memorial Hospital’s HealthLine referral specialists also can help you find the right doctors; call 941-917-7777. It is important that members of your care team have expertise in treating your type cancer and that you feel comfortable with them.
- Don’t be afraid to ask questions of your healthcare team.
- Consider contacting an oncology navigator, if you have not been connected with one.
- Take a loved one to all of your consultation appointments and diagnostic procedures, as well as your initial cancer treatment appointments. Ask your support person to take notes for you, or ask the healthcare provider if it’s OK to voice record your consultation. Your support person can also attend follow-up appointments with you, if needed. There will be days where you need a little more support than others; don’t be afraid to ask for support.
- Keep copies of your medical records and use your healthcare provider’s digital patient portal.
- If you are considering getting a second opinion, be sure to tell your existing doctors that this is your plan. It is best to obtain second opinions prior to starting any treatment.
- Ask your oncology specialists about any available clinical trials.
- Be sure you understand what treatment is recommended and why. How long will the treatment(s) last? What are the most common side effects (short term and long term)? What are all of the potential side effects of treatment? If you are of child-bearing age, can your cancer treatment affect your fertility?
- Find out who to call if you experience side effects and which situations would warrant a visit to the doctor’s office, urgent care center or emergency room.
- Speak to the financial representatives at your doctor’s office and/or hospital. Ask how much your treatment(s) may cost, so you can be prepared.
- If you have health insurance, contact your insurance representative to alert them of your diagnosis and ask for details about related co-pays/deductibles and when prior authorization is needed. If you do not have health insurance, we suggest reaching out to an oncology navigator to learn about what resources might be available for you.
- Know your community resources, including cancer support and wellness programs like group meetings, buddy programs, counseling and complimentary therapies.
- Once in a while, you will need a helping hand. Don’t be afraid to ask for help from your personal support network. Loved ones typically want to help out. Maybe you need something from the grocery store, a meal prepared, the house vacuumed or just someone to talk to. Never hesitate to ask.
You do not have to battle cancer alone. Even if you have a group of loved ones to support you, navigating cancer— while managing all the emotions that accompany it—can be draining for all involved. Our community has resources and people ready to support you on this journey. Reach out, and let us help.
SMH Gastrointestinal Oncology Nurse Navigator Kristi Stetson, RN, BSN, OCN, ONN-CG, has been an oncology nurse for 14 years and an oncology nurse navigator for six. Her mission is to provide cancer survivors and their loved ones with the best guidance, care and support possible.