Let's face it - battling cancer puts your life into a total tail spin. It can mean you're unable to spend time with friends or you need to take time away from work, school or social events. All of this can take its toll emotionally and spark feelings of isolation. It's understandable. There are issues that young people face that are unique and it's important that you seek help from your support network of family, friends and your doctors to determine the best way to BITE BACK and manage these issues for your individual needs.
It is essential to seek care at a treatment center where there is an appreciation for the special needs of adolescents and young adults specifically. You want to choose a treatment center where the medical staff is very familiar with new research and information coming out about your age group and where the staff is able to address the issues that are specific to younger patients either via resources within the treatment center or the community where the center is based.
There are resources available to help you learn more about the treatment centers that have adolescent and young adult treatment programs. Visit the resources section to learn more.
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, what treatment is being proposed and what the long-term implications are. Following are questions that are critical to discuss with your doctor. These topics may be difficult things to talk about, but having the answers will help you make important discussion about your treatment and care and what to expect in the future.
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. It is important to find a doctor you feel very comfortable with. Know that it is perfectly okay to speak with one or two or three or more doctors until you find the one you trust and have confidence will provide you with the best possible care. No doubt, it can feel overwhelming at the beginning. Don't be afraid to ask questions.
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 specialized in treating adolescents and young adults 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 a treatment center and doctor who specializes in treating adolescent and young adults 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.
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.
This is a time in life when you are still learning about who you are, what you need and how to navigate difficulties. As challenging as fighting cancer can be, know that you are not alone. There is a whole community of other adolescent and young adult patients that are sharing the same experience and it is important to find ways to connect with others and seek support during this time. There are so many ways to connect - online, groups within your treatment center or community, etc. Ask your doctor about programs that might be available within your treatment center, the local community or online. CANCER BITES partner organizations - Leukemia & Lymphoma Society, Lymphoma Research Foundation and the Multiple Myeloma Research Foundation offer a range of support programs that can help. Visit the resources section to learn more.
You may have aged out of your parent's insurance coverage or facing being unable to afford private insurance coverage. You may be able obtain insurance through school or work, but these policies may not provide adequate coverage to pay for the high costs of managing care for a serious illness like blood cancer that requires ongoing health management and care. The number one way to BITE BACK is to ask for help. If you are newly diagnosed, it is critical to address questions about your medical insurance right away and understand what your coverage includes. You do not need to navigate this maze alone. There are many organizations and programs that exist to help people just like you manage questions and concerns related to health insurance. It is important to be organized, proactive and diligent in managing your coverage. This can be difficult to do under the best of circumstances and even more so when you are feeling ill, so ask for help!
Remember, if you have a lapse in medical coverage it can be hard to get coverage again. If you don't have insurance at all - look for other benefits you might be eligible for such government support.
CANCER BITES partner organizations - Leukemia & Lymphoma Society, Lymphoma Research Foundation and the Multiple Myeloma Research Foundation offer a range of support programs that can help. Click here to be directed to the resources section where you can learn more about how support programs available to help you navigate questions and financial matters related to medical insurance.
Your doctor can also be a great resource. Ask your doctor to refer you to resources, such as an advocate or social work on the hospital staff that can help address your questions and the process.
Anticipate your financial needs: Even if you have health insurance, undergoing cancer treatment can pose financial difficulties. 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.
Following are some other tips to keep in mind:
Everyone wants to feel good about how they look. It's only natural. As a young person, undergoing physical changes, such as hair loss, skin burns, weight loss or weight gain, scarring from biopsies or surgery, during treatment can be even extremely difficult and upsetting. It can make you feel isolated from your friends and peers. Sometimes it can help to focus on what is happening on the INSIDE of your body versus the OUTSIDE. Remind yourself that these physical changes are a sign that your treatment is working to fight the cancer in your body. These changes are a sign that you are a WARRIOR...a FIGHTER...a SURVIVOR. You don't need to suffer in silence. It is important to talk about how you're feeling. Connect with others going through the same experience either via online support networks or support groups offered within your treatment center or community. Talk to your doctor.
When you are diagnosed with cancer as an adolescent or young adult, preserving your fertility is a topic you need to talk to your doctor about if you think you may want to start a family in the future. Not all doctors will walk you the process of preserving your fertility. If you are newly diagnosed and have not chosen your treatment path yet, it is important to ask your doctor how the treatment being recommended may affect your fertility and if there are options available to help preserve your fertility such as freezing your eggs or sperm. If you are currently undergoing treatment and have not addressed the topic of fertility yet, there's no time like the present - talk to your doctor.
Navigating new romantic relationships isn't always easy under normal circumstances. Add cancer to the mix, and things get even more complicated. It might be difficult to know whether you should bring up your illness when you meet someone new. Remember there are no rules. Some people are comfortable talking about what they have been through or are going through right from the start. Others are not comfortable revealing the details about their illness until they get to know someone better. Think about what you are comfortable sharing or not sharing before you go on a date, so you don't feel put on the spot if the moment arises to talk about your cancer experience. Do what feels best and most natural for you.
If you are already in a relationship, you may not feel sexual when you are going through treatment for any number of reasons. You may feel unattractive because of the physical changes to your body. You may feel a loss of desire because of the hormonal changes caused by the treatment. You are not alone. There are others battling cancer that are experiencing the very same emotions. Seek support.
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:
If you are not knowledgeable about healthy eating, there are many resources where you can learn more. Your doctor can refer you to a nutritionist on staff, and you can also find books and resources online that offer information specific to those battling cancer.
Exercise is one the most important ways to BITE BACK during your treatment and recovery because it can help increase or maintain your energy level, as well as your mood (remember physical activity boost endorphins, and who doesn't want more endorphins). You may find that some days you are feeling lethargic and weak during treatment and any movement feels daunting. Do your best to incorporate a little movement each day - a short walk, stretching or whatever physical activity you enjoy the most. Go slow and steady and little by little you may find you start experiencing the benefits.
When you are diagnosed with cancer, you can feel shocked and cheated. Here you are suddenly in a place that most of your friends and peers will never experience. It feels unfair. Everything feels uncertain. These are normal reactions. While everyone deals with fears and anxiety about death differently, it is important to find a perspective that helps you view your cancer journey in a way that makes these fears more bearable. Some people think of this as a time to think about what is most important to them in life, and a time to awaken to the things they want most - thinking of their illness as an invitation to think about some of life's most important questions. Others focus on making each day count, and as full as it can be, because regardless of whether you have cancer or not, none of us knows what tomorrow may bring. If you are feeling overwhelmed by fears of dying, it is important to BITE BACK and asks for help. Share how you are feeling with your doctor and considering talking to a therapist or joining a support group.
While hearing you are cancer-free is what everyone young person who has battled the disease hopes to hear, it doesn't alleviate the underlying fear that the cancer may return. After treatment you can feel like you have a sword hanging over your head and you may worry about every little sign, ache or symptom. I After spending so many months fighting to get well, it can be disorienting to start to live your life “normally” again. It is important to try regain a grounded and balanced perspective so that you don't waste a precious minute of your life worrying about what tomorrow will bring - focus on today whenever you can.
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 Society, Multiple Myeloma Research Foundation, Cancer.net, etc. 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.
Anxiety is an emotion that everyone experiences at one time or another. 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. Look for a group that is designed special for young people.
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.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.
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.
You may consider yourself very independent. When you are undergoing cancer treatment and recovery, the normal, everyday to-do's may feel far more challenging. 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.
Friends and peers of adolescents and young adults battling blood cancer may feel helpless and unsure how to best support their friend. This is natural and understandable as it may be the first time you've had to confront this situation and comfort anyone with a serious illness. Below are a few tips that may help you show you're support. Sometimes just letting your friend know you're there if they need you is enough.
ASK QUESTIONS: Don't be afraid to ask questions and show you want to better understand what your friend is going through
STAY IN TOUCH:
Cancer Bites patient support partners offer a range of programs that can help you with navigating financial issues, questions about medical coverage, finding a support group, treatment center, clinical trials and more. Below are links to the resource pages of Cancer Bites partners where you can access a wealth of tools to help. Click on the logos below to be directed to the organization's resource page: