Newly Diagnosed With Leukemia or Lymphoma? Your Next Steps
Updated June 09, 2015.
If you have just been diagnosed with leukemia or lymphoma, it may be difficult to imagine moving forward and taking the first steps on your cancer journey. Or, you may be feeling very eager to get started. Either way, this is probably not a road you have travelled before and you may be wondering where to start.
There will be an entire team of professionals that will each play a role in your cancer care.
This team will include doctors, nurses, social workers, psychologists, nutritionists, spiritual care workers, pharmacists and more. Find out about what each member is responsible for, and how their unique knowledge can be a resource to you.
You have likely already met with a hematologist or oncologist. This is the specialist who will create your treatment plan, as well as follow up care. It is important that you trust and feel comfortable with your specialist. If you don’t, you may want to consider getting a second opinion, or changing doctors. There are a number of ways to find a specialist:
You will also need to make a decision about where to receive your cancer care. Where you live, insurance considerations, and the physician you choose will impact this choice. There are three types of cancer center:
Ensure that where you choose to have your treatment is “accredited,” or meets national standards for cancer care, and is able to provide you with the treatment you require. There are a number of ways to locate a treatment center:
Cancer can be a very expensive disease to have. The cost of testing, hospital stays, treatments, can lead to financial crisis in many families. It is important to know what services are covered by your insurance and what fees and expenses you are responsible for. Here are some questions to answer as you look through your policy, or speak to your insurance company:
If you are speaking to an insurance company customer service representative, make notes, and do not be afraid to ask questions. You need to feel comfortable with the amount of information that you have so you can plan how to manage your finances during treatment.
If you do not have health insurance, you may be eligible for financial assistance from government entitlement programs. Call your local social security office to see if you qualify for any of these programs.
Sometimes, people with a new diagnosis of leukemia or lymphoma struggle with whom to tell, and how to tell them. You may be worried that you will become a burden to your family, or that people will be scared and uncomfortable if they do not know what to say. On the other hand, this is a very difficult secret to keep to yourself and telling will give people the opportunity to help and support you. This is an individual choice that only you can make.
However, you may be surprised at the strength some of your loved ones, and the strength that it gives you to have a team of supporters in your corner. Many people will not know what to say or do, but they will still be there for you.
You might also be trying to decide if you should tell your children or not. As you probably already know, children hear and see everything that goes on around them. It is very likely that they have already picked up that something is not right, or that you are stressed and distracted. If you tell them the truth, it gives them the opportunity to deal with what is really wrong, not with what they may imagine is wrong.
Whether you decide to tell your coworkers or your boss depends on a number of factors. What is your relationship with them like? Will you need to take time off from work? Does your workplace have an employee assistance program (EAP)? These factors will all play a role in the decision you make.
Although your family and friends may be your greatest source of strength during your cancer journey, there are also a number of organizations that have been developed to assist you (and your loved ones). Meeting with other people who are going through the same experience may give you hope and encouragement. Organizations can help you connect with others, and also help you access resources to make your journey a little easier. Some examples of these organizations are:
These are some practical suggestions of things to do when you are newly diagnosed with leukemia or lymphoma. However, at this point, you may be wondering how you are going to make it through this journey. It is important as you complete the “task-oriented” aspects of your care, you do not forget to look after the “emotion-oriented” aspects. Focus on ways to reduce your stress (see coping for suggestions), and be sure to rest as you need to. Your emotional and spiritual health will be an important part of your wellbeing during your fight against cancer.
If you have just been diagnosed with leukemia or lymphoma, it may be difficult to imagine moving forward and taking the first steps on your cancer journey. Or, you may be feeling very eager to get started. Either way, this is probably not a road you have travelled before and you may be wondering where to start.
Finding A Good Healthcare Team
There will be an entire team of professionals that will each play a role in your cancer care.
This team will include doctors, nurses, social workers, psychologists, nutritionists, spiritual care workers, pharmacists and more. Find out about what each member is responsible for, and how their unique knowledge can be a resource to you.
You have likely already met with a hematologist or oncologist. This is the specialist who will create your treatment plan, as well as follow up care. It is important that you trust and feel comfortable with your specialist. If you don’t, you may want to consider getting a second opinion, or changing doctors. There are a number of ways to find a specialist:
- Ask your family doctor whom they would choose
- Speak to physician referral services
- Ask family and friends
- Use an online resource such as:
You will also need to make a decision about where to receive your cancer care. Where you live, insurance considerations, and the physician you choose will impact this choice. There are three types of cancer center:
- National Cancer Institute Designated Centers
- University Hospitals
- Community Cancer Centers or Local Hospitals
Ensure that where you choose to have your treatment is “accredited,” or meets national standards for cancer care, and is able to provide you with the treatment you require. There are a number of ways to locate a treatment center:
- Ask your physician for a referral
- Speak to your insurance company
- Use an online resource such as:
Understand Your Health Insurance
Cancer can be a very expensive disease to have. The cost of testing, hospital stays, treatments, can lead to financial crisis in many families. It is important to know what services are covered by your insurance and what fees and expenses you are responsible for. Here are some questions to answer as you look through your policy, or speak to your insurance company:
- What services are covered by your insurance?
- What costs are covered by your insurance? Is there a limit?
- What costs are you responsible for? This may include premiums, deductible, co-pay, or co-insurance.
- Are there limitations as to which doctors can provide treatment for you, or where you can receive care?
- Is there a process to follow regarding approval for certain treatments or admissions?
- What happens if your claim is denied?
If you are speaking to an insurance company customer service representative, make notes, and do not be afraid to ask questions. You need to feel comfortable with the amount of information that you have so you can plan how to manage your finances during treatment.
If you do not have health insurance, you may be eligible for financial assistance from government entitlement programs. Call your local social security office to see if you qualify for any of these programs.
Talking About Your Diagnosis
Sometimes, people with a new diagnosis of leukemia or lymphoma struggle with whom to tell, and how to tell them. You may be worried that you will become a burden to your family, or that people will be scared and uncomfortable if they do not know what to say. On the other hand, this is a very difficult secret to keep to yourself and telling will give people the opportunity to help and support you. This is an individual choice that only you can make.
However, you may be surprised at the strength some of your loved ones, and the strength that it gives you to have a team of supporters in your corner. Many people will not know what to say or do, but they will still be there for you.
You might also be trying to decide if you should tell your children or not. As you probably already know, children hear and see everything that goes on around them. It is very likely that they have already picked up that something is not right, or that you are stressed and distracted. If you tell them the truth, it gives them the opportunity to deal with what is really wrong, not with what they may imagine is wrong.
Whether you decide to tell your coworkers or your boss depends on a number of factors. What is your relationship with them like? Will you need to take time off from work? Does your workplace have an employee assistance program (EAP)? These factors will all play a role in the decision you make.
Find Support
Although your family and friends may be your greatest source of strength during your cancer journey, there are also a number of organizations that have been developed to assist you (and your loved ones). Meeting with other people who are going through the same experience may give you hope and encouragement. Organizations can help you connect with others, and also help you access resources to make your journey a little easier. Some examples of these organizations are:
Taking Care Of Yourself
These are some practical suggestions of things to do when you are newly diagnosed with leukemia or lymphoma. However, at this point, you may be wondering how you are going to make it through this journey. It is important as you complete the “task-oriented” aspects of your care, you do not forget to look after the “emotion-oriented” aspects. Focus on ways to reduce your stress (see coping for suggestions), and be sure to rest as you need to. Your emotional and spiritual health will be an important part of your wellbeing during your fight against cancer.
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