The word “cancer,” a label of abnormal or damaged cell growth that becomes more abundant over time. Cancer may be solid tumors or of the blood. The news can cause ripples of disruption and a flood of emotions. Feelings of shock, denial, fear, anger, and uncertainty are a normal response. After the initial shock, as you start to process the news, you may want to jump on the internet to find your miracle. While searching the web for information, please be cautious with the sites you browse as there can be wrong information. Keep in mind, the information is generalized and is not tailored to your specific condition. It can easily cause you to be immobilized by fear and panic. Steps you can take to prepare yourself in advance to your upcoming appointment is to start gathering information and listing questions. It may be hard to think of what questions to ask, so I listed some helpful sites below that include pre-set questions for you. I designed a handy mnemonic to help prepare you in advance for your first appointment with your cancer team.
Gather, Ask, Plan
Gather is your first step towards success. You need to gather all the information about yourself, your family, and your new specialist. It is vital to be open and honest with the information you provide your doctor because that will keep you safe and improve your outcome.
Tips on what to gather:
- Call your insurance and find out details about copay, out of pocket max, deductible, and if new specialist is covered, in-network, or accepts self-pay if you don’t have insurance.
- Have all your medical records transferred to your cancer team ahead of time.
- Medical history, surgical history, family history including dates, ages, conditions.
- List all your medications, herbs, supplements with all the dosage information.
- Keep a journal of symptoms with dates and rate each one with a scale of 0–10. With 0 being no complaint and 10 being severe. Record your list of concerns and prioritize them as well.
- Substance use or abuse is important to list, they do not report this and keeps you safe.
- Inform office if you have any limitations or handicaps, such as vision, physical or mental.
- Inform office if you require an interpreter so they can accommodate extra time and resources.
- Arrive early to appointment; call ahead and get information on their address, directions, parking instructions, and if the doctor allows you to record their visit. It is best to see how many visitors you can take to the visit as well. It is important to take at least one companion with you to consults so they can take notes for you and ensure all your questions are asked and answered.
Ask is next step towards success. In my 20 years of nursing experience, I can validate that patients who are prepared in advance and ask more questions have higher satisfaction in their visit and have better outcomes. I highly recommend asking your cancer specialist for a nurse navigator to be assigned to you to help prepare you and guide you through each step of your journey. Nurse navigators assist with barriers to care, education, and provide resources. As you come up with questions, write them down immediately as you can anticipate many calls and appointments being made, and it is very easy to forget your questions if you wait to write them down. Look under tools and resource section for a list of questions pre-selected for you.
Plan is the final step towards success. This step is a time for reviewing what has been discussed, getting anything cleared up that may be hard to understand, goal planning, setting up diagnostic tests, and pursuing plan of treatment. Communication with your cancer team is crucial so building a strong relationship is the cornerstone. Get to know the support staff and who to call for any concerns, what that phone number is, and what to report.
Tools and resources:
Cancer.net online set of questions
American cancer society online questions (PDF)
Has info on insurance, disability, FMLA, work, legal, patient rights, etc.
Cancer and careers
Cancer and careers – Assist for current employment, perspective employment, self-employed
With these tools and resources, you can step in faith towards a better foundation for success in your cancer journey. I wish you hope, wellness and happiness.
Kristi Pyle Rn, MSN, OCN
Sarah Cannon Breast Cancer Nurse Navigator with St David’s Healthcare