Taking charge after your diagnosis
You’ve just heard the three words that will change your life forever—“You have cancer.” From this point on, you’ll be overwhelmed with strong emotions and important decisions. Here are some important first steps to help you get started in your treatment journey.
Understand your emotions
After a cancer diagnosis, your initial feelings will probably be disbelief or shock. After the news sinks in, it’s normal to also experience anxiety, anger, grief, fear, despair, helplessness, guilt and a sense of loss. “When meeting newly diagnosed cancer patients, I urge them to embrace their emotions,” says Vicki Blevins-Booth, executive director of Kentucky CancerLink, Inc. “I want them to understand they are not alone, and that they have family, friends, and an experienced healthcare team that are there to support them.”
Build your support system
Cancer can make you feel isolated, so it’s important to reach out to those around you from the start. It may be helpful to begin with family first, and then friends. Choose a place and time where you can focus on them and won’t be hurried or interrupted. Be prepared for a variety of reactions and decide ahead of time how you want to respond. Marta Hayne, radiation oncologist at Baptist Health, Lexington, recommends that friends and family take their cue from the patient, saying “You, like us, are there to support them. At some point what you think they should do and what the patient wants might differ. We need to support the patient.”
Friends will ask if there is something that they can do. Yes! Let them know they can help by dropping off food or meals, cleaning and doing yard work or laundry, running errands, offering to take care of kids and pets or by giving you a ride to a doctor’s office or errand. Sometimes the greatest help a loved one can provide is simply listening.
“The role of family and friends is to provide a support team for the patient,” Blevins-Booth observes. “The patient also needs a point person who will relay updates to other family and friends. The team member may accompany the patient to appointments and ask questions and take notes for them. It takes a village to manage a cancer diagnosis and navigate the healthcare system.”
If you choose to tell the workplace about your cancer, start by talking to your boss directly. Speak to HR about company policies and your employment rights. HR can also advise you on arrangements for covering your work during and after treatment.
Putting your diagnosis out on social media is very personal, and there’s no right or wrong way. For some, it’s an easy and effective way to keep their social network informed on their situation and they’re comfortable sharing details and photos of their treatments. Others may want to relate only the most basic information or use a separate network like CaringBridge to chronicle their health journey. Or, you may prefer not to say anything at all, at least initially. Ultimately, what you share, when and to whom, should be your decision alone.
Find the best doctor for your particular cancer
There are many different approaches to testing for and treating cancer and each oncologist will have different experience. Getting a second opinion may help you feel more secure in your decision-making, and some insurance companies even require it in order to provide coverage. When selecting the members of your cancer care team, do your research carefully and be willing to travel if necessary. Ideally, you should not only feel like you’re getting the most knowledgeable specialists but those you’re comfortable with too.
Create a physical or digital file to keep and organize all the details-contact numbers and addresses, appointment schedules, test results, notes and to-do lists. Keep it with you always and continually update it. When visiting your doctor, prepare questions in advance and record conversations. Chemotherapy can temporarily impact memory and concentration, so it is helpful to have everything in one place to refer to.
Know the terms of your health insurance policy
Understand your policy and bring up any questions with your insurance provider. Determine your policy’s co-pay, deductible, coinsurance and out-of-pocket amounts and lifetime limits. Learn which providers and services are in and out of your network. Ask what must be pre-certified before your insurance provider will cover it. Find out whether your plan is calendar year (January-December) or fiscal-year based-this will help you manage costs. Keep records complete and organized and carefully review all insurance bills and statements as they come in. Short-term and long-term disability insurance can help you compensate for lost wages during the times when you can’t work but must be purchased separately from health insurance.
Develop a financial plan for covering the cost of treating your cancer
Even with the best insurance, treating cancer is expensive. You’ll need to plan for medical costs like provider visits (including follow-ups after active treatment), testing, treatments, drugs, surgery, hospital stays and in-home care. In addition, budget for insurance premiums and costs, legal fees, travel expenses and lost wages. Other costs could include wigs, medical equipment and nutritional supplements.
Develop a medical support network
Many facilities conveniently offer a multitude of services all under one healthcare system. “I’m very fortunate to work at a hospital that provides many resources for oncology patients,” Hayne says. “We have oncology dietitians to maximize nutrition. We have genetic counselors. We have nurse navigators to steer patients through diagnosis and treatment. We have social workers to help alleviate the stress of a medical illness whether it is with housing, medications or transportation. We have multidisciplinary conferences including all of the above plus physicians from pathology, surgery, hematology oncology, radiology, pulmonology, pharmacy and radiation oncology so that patients can be discussed by physicians and staff for our best recommendations. We also have a palliative care team to maximize symptom control and hospice support.”
Cancer support groups, both in person and online, can be a safe and comforting place to connect with others who are going through the same thing you are and provide empathy and guidance. For more personalized care, some therapists specialize in counseling people with cancer and their families. You can also reach out for spiritual guidance from a minister or clergy member at your church.
Decide upon a treatment plan
Every cancer and patient is unique and you and your treatment team should choose what’s best for you. “You are in control,” Hayne emphasizes. “The medical team is on your side to let you know your choices and options. There are many resources available, let us help you through this. We are in this together.” Determining what you could realistically get from treatment: cure, stabilization or symptom relief will help direct next steps. Research both traditional and alternative therapies and clinical trials. Factor in any other health conditions that you might have.
Take care of you
Cancer treatments like chemotherapy can weaken the immune system. Always keep cooking utensils and countertops clean, prepare and store food at the proper temperatures, and avoid salad or sushi bars with raw items which could contain harmful bacteria.
Exercise is safe during cancer treatment and may help improve fatigue. Stay as active as you can while gradually increasing exercise levels after treatment. If your treatment has compromised your immune system, you should avoid public workout areas like gyms until your white blood cells have returned to safe levels. Those getting radiation should avoid pools because chlorine can irritate the skin at the treatment area.
Focus on staying comfortable. There are many wonderful products made just for increasing ease during treatment, from chest port access shirts to colorful PICC line covers. Look for specialized skin care treatments formulated for those undergoing chemotherapy and extra-soft bedding for scalps newly sensitive due to hair loss.
Show cancer you’re in charge
The National Cancer Institute reports that in 2016, there were an estimated 15.5 million cancer survivors, and by 2026, that number is expected to go up to 20.3 million. So as you’re preparing your own cancer “to-do” list, remember you’re the one with the power. “The patients I have met with cancer are brave and strong and have a grace that is a privilege to witness,” Hayne reflects. “Every day working with cancer patients reminds me to keep my priorities straight.”
Survival rates are better than ever due to earlier detection and improved treatments, and the choices you make impact your outcome. “In my experience, the one common thread that binds cancer patients is the discovery of their inner strength that they themselves did not know existed,” Blevins-Booth explains. “Their faith in a higher power and expressions of hope seem to be an important part of their acceptance and healing.”