You have just been told the unthinkable – the worst news you can ever imagine hearing – you have cancer. The first step in dealing with your diagnosis is to accept and acknowledge your feelings about it. You may be receiving pressure from well-meaning family and friends to “think positively” and suppress the emotions that you might be experiencing. Know that their intentions are good, but that you are entitled to feel all the emotions you are experiencing – fear, anger, anxiety. If you are feeling scared and anxious, the last thing you may want someone to say is “think positively” when you are not ready to do so. Remember, you are entitled to feel whatever emotions you are feeling and your emotions may change from day to day. Cancer will take you on an emotional roller coaster ride – so buckle up, it’s gonna be a bumpy ride! Surround yourself with people that have the strength to listen to your fears and concerns. Give voice to your feelings. Be true to them. You don’t have to pretend to be someone you aren’t.
When Cancer Bites – part of BITING BACK is empowering yourself with knowledge and information you need to make decisions about your care. When you are first diagnosed, it is critical that you understand your diagnosis and what treatment is being proposed. Come prepared to your appointment with the following questions:
Even if you have health insurance, undergoing cancer treatment can pose financial difficulties. IT is important to anticipate the potential scenarios you might encounter such as having to take time off of work and whether disability payments will cover all of your expenses. Talk to your healthcare provider and the hospital billing department to ensure you have answers to the following questions:
If you are insured:
If you have difficulty paying for drugs, treatment or other costs you incur as a result of your cancer, Leukemia and Lymphoma Society and the Lymphoma Research Foundation offer resources to help you navigate the financial questions you may have.
The most important person on your medical team is YOU! Because you will be choosing the team that you will be partnering with along your journey. You want to choose team members and a treatment center that you trust and have confidence will provide you with the best possible care. No doubt, it can feel overwhelming at the beginning. You may be faced with choosing from a very long list of doctors and treatment centers that you are unfamiliar with or have only a few options available depending on where you live and the resources based in that location. Financial obstacles and health insurance issues may also be a factor in your choices. Think about how a head coach puts together a winning baseball or football team in professional sports. It’s a process – they look at a player’s track record and credentials. They research recommendations and speak with other experts and peers. As the most important person on your medical team – consider yourself like the head coach. You want to choose a team that you can communicate openly with and who is willing to take time to answer your questions and address your concerns. Some people choose a treatment center first, while others begin by choosing a doctor or doctors to manage the treatment. Some people have the flexibility to travel to another city or state for their treatment, while others don't. Whatever your situation, you can make an informed choice when you know the questions to ask, issues to consider and resources available. Breaking the process down into steps and taking a methodical approach can make choosing your medical team feel less overwhelming.
As a first step, start by asking the doctor who diagnosed you for a referral to someone who specializes in treating people with your specific type of blood cancer.
Make sure the doctors you choose accept your health insurance or can arrange for you to establish a payment plan to manage costs. Some health insurance plans require a referral from the primary care physician for a consultation with a specialist or require that you choose from the plan's list of specialists and affiliated treatment centers, usually known as "in-network" specialists or treatment centers. Check with your health plan policy and speak with your health plan representative to understand the coverage provided by your plan Other factors to consider when choosing a doctor are listed below.
Coping: You Have Cancer, Now What?
The Leukemia and Lymphoma Society offer a free downloadable fact sheet "Choosing A Blood Cancer Specialist or Treatment Center" with detailed information and links to tools that can assist you in making choices about your medical team.
Getting a second opinion: Often people may be hesitant about getting a second opinion because they feel it might alienate your doctor. Don’t be afraid to get a second opinion. Second opinion consultations are standard procedure, and your doctor will be very familiar with making a referral for a second opinion. Ideally you want to complete your second opinion consultation prior to starting a treatment regimen. Ask the doctor that made the initial diagnosis, or a member of their administrative staff, for a complete transcript of your records, or have them sent ahead, before going to your consultation. The cost of obtaining one second opinion is typically covered by most insurance plans, however it is best to consult your individual provider to confirm.
Learn more about your cancer: From the moment that you are diagnosed – you are a SURVIVOR…A WARRIOR…AN ADVOCATE. You can feel more empowered by learning as much as you can about your cancer. Understanding your blood cancer diagnosis will help you be proactive and educated participant in your care and empower you to make the decisions that are best for your individual situation. There are many resources available including this website to learn about the different tests doctors use to diagnose and treat your type of blood cancer. Other sources include the Lymphoma Research Foundation, Leukemia and Lymphoma, Cancer.net, Lance Armstrong Foundation, Society. Always discuss what you learn with your medical team and ask questions when there are things you don’t understand. Keeping a notebook handy to write down questions or things you want to remember can be helpful.
Managing Anxiety: Anxiety is an emotion that everyone experiences at one time or note. When you are coping with a cancer diagnosis, anxiety levels can increase. It’s only natural and expected, but you might find that it interferes with your ability to find a sense of calm, clear your mind and to feel a sense of strength in navigating treatment. Many different things can trigger anxiety - undergoing a screening test, waiting for results, undergoing treatment, or anticipating a recurrence of your cancer following treatment. Anxiety may even increase feelings of pain and discomfort, interfere with sleep, cause nausea/vomiting and interfere your quality of life as well as your home life. Chronic anxiety can lead to fatigue and depression over time. If you are someone who experienced episodes of intense anxiety before your cancer diagnosis, you may find your feelings of anxiety become overwhelming at times along your cancer journey and that they are may interfere with your cancer treatment. Some cancer medications may worsen anxiety so it is important to talk to your doctor about the anxiety you are feeling and to discuss techniques that can offer relief from the stress of cancer, even for brief periods of time. Here are some strategies for helping to reduce anxiety during your cancer journey:
Learn as much as you can about your cancer: Sometimes fear of the unknown is what prompts anxiety. Empower yourself by learning as much as you can about your cancer diagnosis and treatment so you know what to expect.
Individual and Group Counseling: The emotional and physical stress of undergoing cancer can be positively overwhelming. Having an outlet such as one on one or group counseling where you can talk through your fears, concerns and your experiences can have a profoundly positive effect on your overall well-being.
Creative Therapies: Music has long been considered a healing influence. Many cancer centers are now incorporating music therapy, which can include listening to music or playing instruments, as a complement to other therapies for their residents. Some studies have shown that it can help increase well-being of cancer patients, control anxiety, lift spirits, boost the immune system, reducing levels of stress hormones, and even relieve pain – all resulting in a physiological boost. If you are someone that enjoys and responds to music, seek out practitioners of music in your local area or find ways to incorporate music in your day to day well regimen as way to bring calm and relaxation to your day. Art therapy is another outlet that you may find cathartic. It can help reconnect people with their own creativity and even to discover a new sense of empowerment in the midst of the chaos of the cancer experience. Creating with whatever media you choose – paint, charcoal, markers, clay – whatever you might have on hand at home – can transport you from the worries you may be feeling at the moment to a place where your mind can be put at ease.
Ask for and accept help from loved ones:You may consider yourself very independent and pride yourself on being a pillar of strength for friends and family. When you are undergoing cancer treatment and recovery, the normal, everyday to-do’s may feel far more challenging. Simply getting to and from doctor’s appointments, preparing food, caring for your children, shopping – all may feel physically and emotionally daunting during this time. If you are experiencing this, then it is time to ask for the help of others. Anticipate what your needs might be for the coming weeks and ask friends and family to for help in advance. Your loved ones will be happy to provide you with support and assistance in a meaningful way – so don’t be afraid to reach out and share what your needs are. If your network is small, there are organizations that can also connect you with others to help. The Leukemia and Lymphoma Society and the Lymphoma Research Foundation are great places to start. Another organization is www.lotsahelpinghands.com is one example of a scheduling website you can use to coordinate your needs and those who wish to help.
Medication to easy anxiety: Medications may be used alone or in combination with your anxiety management and coping techniques. If you are having trouble managing your anxiety, don’t be afraid to talk to your doctor about whether medication is an option that makes sense for you. Your doctor can help you choose the right medication and dosage to help alleviate your symptoms, and work with you to monitor whether you can eventually decrease the dosage as your symptoms diminish.
Nutrition: Undergoing treatment can reap havoc on your body. There has never been a more important time in your life to eat well. As a survivor, it is critical to keep your body properly nourished and fueled in order to stay strong throughout your treatment journey and afterwards. Adopt a nutritional strategy to help put your body in the best position to BITE BACK: