When you find out you have a serious illness, you are likely to feel many emotions. After your emotions settle, you will need to make some critical choices about your illness, your doctors, how to get better, and how to pay for it all. This section guides you through regaining control of your physical, emotional, and social well-being.
Patient Story – (The story is true; the patient’s and provider’s names have been changed.)
Betty Roland was diagnosed with breast cancer in 2015 while pregnant, and she was given just 12 months to live. Despite this grim prognosis, Betty has defied medical expectations and was still alive seven years later. She credits her survival to maintaining good mental health and regular exercise.
Betty’s approach to her diagnosis exemplifies several best practices for patients with terminal illnesses:
- Maintaining a positive outlook: Betty said, “I don’t think about cancer half the time, I think about the great things I’m going to do next year.”
- Focusing on quality of life: She continues to make plans and live life to the fullest, rather than dwelling on her diagnosis.
- Adhering to treatment: Betty attends chemotherapy every three weeks, showing the importance of following prescribed medical treatments.
- Setting goals: She hopes to leave a legacy for her children, giving her a sense of purpose and motivation.
- Regular exercise: Betty credits exercise as one of the factors contributing to her survival.
Betty’s story demonstrates that while a terminal diagnosis is extremely challenging, following best practices and maintaining a positive attitude can lead to unexpected positive outcomes and a higher quality of life.
Where to Start?
Over the next few days, weeks, and months, you will need to learn a lot to make good choices. It is your right – and your job – to do this if you want the best and safest care. You do not have to go through this alone. However, you need to take the lead. Getting good care can be tricky. You need to trust what health care professionals tell you while double-checking everything.
Here are the steps for getting the best care. We will discuss each step in this section:
- Understand Your Emotions
- Take Control
- Talk to Your Doctor Again
- Find Support
- Keep Your Normal Routine
- Learn About Your Illness
- Understand Your Insurance
- Make a List of Questions
- Get Copies of Your Medical Records and Test Results
- See a Specialist
- The Second Appointment
12 Make Sure You Know What’s Wrong - Get a Second and a Third Opinion
Your doctor or insurance company may have already given you some information about your illness in a booklet or on a website. However, you may not be ready to understand everything.
Step 1: Understand Your Feelings
It is okay and normal to feel shocked, angry, or worried. Even grown-ups might act differently for a little while. Usually, these feelings get better in a few weeks, especially if you have people who support you.
Patient Tip: Find a few people you trust to talk to. If you do not have anyone like that in your life, find online and/or local support groups of people who have the same illness. Sometimes, it is easier to talk to strangers online because you all have something in common, and they are likely to understand what you are going through. Remember to double-check everything you learn in support groups with your doctor.
People feel all sorts of things when they find out they have a serious illness, like:
• Feeling angry
• Feeling like you cannot do anything.
• Feeling sad
• Feeling confused
• Feeling scared
It is important to know that all these feelings are normal and usually rebalance after a few weeks. Feeling sad is a big thing for many people when they learn they have a serious illness. A doctor named Elisabeth Kubler-Ross produced a way to explain these feelings, called the Five Stages of Grief. Thy are:
- Denial: “This can’t be happening to me.”
- Anger: “Why me? It is not fair!”
- Bargaining: “If I’m good, can I please live until…?”
- Depression: “What’s the point of doing anything?”
- Acceptance: “Okay, I understand what’s happening, and I will be okay.”
You might not go through these feelings or feel all of them in this exact order. The important thing is to figure out how to handle your feelings, stay strong, and ask for what you need to get the best care.
Remember, asking for help and taking your time making decisions is okay. You will make better choices once you feel calmer. Do not make any big decisions about your health right away unless your doctor says you must. If you need to decide quickly, try to get a second opinion. If you are not feeling better after a few weeks, or if you are feeling worse, ask your doctor about counselors or other support.
Step 2: Take Control
Remember, you are not alone. Many people face serious illnesses. Your choices can make a big difference in how well you get better. You are not helpless. You are just like everyone else. Most people will get a serious illness at some point in their lives. When it is your turn, remember that lots of other people have been in your shoes, and some are going through the same thing right now.
A few key questions are “why do some people keep living their lives while others only think about their illness, why do some people get better and others do not, and why do some people go back to doing the things they enjoy, while others do not? It is not easy to answer these questions, but we know that you can change what happens by what you do.
Step 3: Schedule a Follow-Up Appointment
After you find out you are sick, make another appointment with your doctor or a specialist as soon as you can. Ask for extra time to talk about your illness and ask questions. If you are seeing a specialist, let your regular doctor know. At the appointment, you will talk about your illness, ask questions, and learn about your options.
Tip: When you call to make the appointment, tell the person scheduling it that you would like some extra time with the doctor to make sure you understand everything.
While you are waiting for the appointment:
• Talk to friends, family, and other patients about how you are feeling.
• Learn the basics about your illness.
• Call your insurance company to tell them about your illness. Ask if they will pay for a second opinion and what costs you will have to pay. Ask for a case manager to help you.
• Write down a list of questions for the doctor.
Step 4: Find Support
Finding someone you trust to talk to about your feelings and choices is important. If you can find a few people, that is even better. If you do not have anyone in your life you trust, look for support groups online or through your local hospital or clinic. You can also check out online patient communities. Even if you do not talk to anyone at first, reading what they say to each other can help.
Online Patient Communities
• PatientsLikeMe: Patients share information about themselves and their illnesses. You can find others with similar illnesses and see what treatments work for them.
• MDJunction: Free, online patient communities with information mostly from patients.
• DailyStrength: Free support groups for patients, organized by illness.
Tip: Trust what people tell you and always double-check with your healthcare providers.
Step 5: Keep as Many Routines as Possible
A serious illness can make things feel uncertain. Keeping up with your usual routines and activities helps you and the people around you feel safer and secure. This will also help you feel more normal.
Step 6: Learn About Your Illness
You will get more out of your time with the doctor if you learn about your illness beforehand. You cannot expect your doctor to know everything about it. According to Dr. Donald Lindberg, the Director of the National Library of Medicine, even if he read two new articles every night, he would still fall far behind on all the new information!
If you have internet access at home, go to a trusted website for information. Do not just use Google or another search engine. Some good places to start are:
Healthfinder.gov: This website from the U.S. Department of Health and Human Services has health information that experts have checked.
MedlinePlus: This website from the National Institutes of Health lets you search over eight hundred health topics, drugs, news, and a medical encyclopedia with pictures.
Other good health websites include:
WebMD.com at https://www.webmd.com/
MedicineNet at https://www.medicinenet.com/
Mayo Clinic Health Library at https://www.mayoclinic.org
These sites have easy-to-understand info about many illnesses. If you want to read the latest articles from medical journals, you can find them online at:
PubMed: This is the National Library of Medicine’s database of articles from medical journals. It is found at https://pubmed.ncbi.nlm.nih.gov/
Another option for learning about your diagnosis or illness is to use an artificial intelligence (AI) search engine. A few well-respected are:
• Consensus: specializes in research.
• Perplexity: Top user experience.
• Google AI Overviews: considered one of the most up-to-date.
By doing research, you should learn:
• What is your illness?
• How it usually affects people.
• Which doctors usually treat it?
• What the usual treatments are.
• What the expected outcome is.
Once you know these basics, you can prepare questions for your doctor and see if the answers help you understand your choices.
Step 7: Learn About Your Insurance
Call your insurance company to get a copy of your health insurance plan and learn what your plan covers. Ask for a case manager to help you if you are not sure. When you signed up for insurance, you agreed to follow the rules of the plan. To avoid problems, you need to read the rules and talk to your insurance company before you see your doctor again.
When you call, do the following:
• Get the name of the person to whom you are talking.
• Make sure you have a copy of your plan.
• Write down the date and time you called, and what the person said.
• Explain your illness.
• Ask how to file a claim.
• Ask for a case manager to help you throughout your treatment.
• Ask what expenses will be covered and what will not.
• Ask what expenses you will have to pay yourself. Also, ask if a second opinion and all treatments are covered.
Step 8: Prepare Questions for Your Doctor
Before you see your doctor again, write down questions you want to ask. If you do not ask questions, your doctors might think they have answered everything you need to know, or that you do not want any more information. Write down your questions in advance, and plan to write down or record the answers so you do not forget anything.
The questions below are just a guide. The answers should help you understand important things about your illness. You might have other questions of your own. The goal is to get all the information you need to decide what is best for you.
Here are some things to ask about:
• Your illness or condition
• The tests used to find out about your illness.
• Treatments for your illness
• Your insurance coverage and what it will cost.
• Good places to find more information.
Questions to Ask Your Doctor
- What is the name of my illness? You should learn the technical name and what the illness does.
- How does my illness affect my body, and how will it change over time? You should learn what usually happens to people soon and in the long term.
- What is my outlook (what is likely to happen) with and without treatment? You should learn what to expect in terms of your ability to do things, your quality of life, and what would happen if you did not get any treatment.
- Can you send me to any specialists? You should learn if your doctor knows any specialists for your illness.
- What tests did you use to find out I have this illness, and what did they show you? You should learn the names of the tests and what made the doctor think you have the illness.
- Will I need any more tests? If yes:
• What are the names of the tests?
• What will each test show?
• What are the risks of each test?
• What should I expect before, during, and after the tests?
• Will it hurt?
• Will I need medicine to relax for each test?
• Are there any other tests I could take instead?
• Will my insurance pay for the tests?
• How can I learn more about each test?
Based on the answers, you should learn what tests you might need, what each test is like, and what your doctor hopes to find out from each test.
- Do you know about any other treatments, like special herbs or exercises? You should find out if your doctor knows anything about these other treatments. Do not expect them to know a lot. But, if your doctor is willing to talk about it, you might find some new things to try.
- How long do I have to decide about treatment? You should find out how much time you must consider your choices. If your doctor wants you to have surgery or a big treatment right away, ask why. Find out what will happen if you wait, and how quickly you can get a second opinion from another doctor.
- Are there any special studies I can join? You should find out if your doctor knows about any studies, called clinical trials, that you could join. These studies might test new ways to treat your illness.
- Now that I know what is wrong, what do I need to change in my life? You should learn if your illness will change what you can do, if you need more tests, and how treatments will affect your life and your family’s money.
- Does insurance usually pay for the treatment you are suggesting? You should find out if the treatment your doctor wants you to have is usually covered by insurance.
- Will you help me get my insurance to pay for the treatment I choose? You should find out if your doctor will help you get insurance to pay for a new or different treatment.
- How can I get copies of my medical records? You should learn how to get copies of your records and test results.
Remember What the Doctor Says!
Since people usually do not remember everything, they hear, writing down the answers is a good idea. If you cannot write fast enough, ask if you can record the conversation. You can also bring a friend or family member to help you remember. It is important to understand your choices, so keep asking questions! Whatever you do, make sure that you are informed of and understand your options. This is your legal right. Just be polite.
Step 9: Get Copies of Your Medical Records and Test Results
It is easier to get your records if you ask for them when you first go to the doctor. When you call to make your appointment, ask how to get copies of your records and how much it will cost. Most offices will have you fill out a form when you get there. If your appointment is a week or more away, send a letter to your doctor asking for the records.
You will probably have to pay for the copies. If you cannot afford the fee, talk to your doctor right away. You cannot usually take your records and copy them yourself. Copies of X-rays or other films will cost more. Ask when the copies will be ready and set a date to pick them up. When you pick them up, bring a copy of your request and a check to pay for them.
If you need to write a letter to request your medical records, include:
• The doctor’s name
• The doctor’s address
• Your name
• Your address
• Your medical record number
• Your Social Security number and insurance ID number
• The dates you saw the doctor.
• What records do you want (like notes, reports, or test results)
Doctors usually have 30 days to give you the copies. Be nice and ask for them sooner!
Step 10: See a Specialist
Talk to your insurance company when you find out you have a serious illness. Make sure you know what your insurance covers if you want to see specialists, how much you will have to pay, and what rules you need to follow to get the most help.
Step 11: The Second Appointment
During this appointment, your doctor should help you understand what is wrong, talk about more tests, discuss treatment options, and answer your questions. You should also decide if you think your doctor will help you fight your illness. If you have not yet asked for your medical records, do it when you get to your second appointment. By the time you leave, you should understand what is wrong and how to treat it. Ask for any instructions in writing. If you still do not understand, ask where you can go for more information. After this appointment, you need to think about your doctors and treatments.
Tip: Before starting any treatment, consider getting another opinion, whether you like your doctors, and what treatments are best for you.
Step 12: Make Sure Your Diagnosis is Accurate
Sometimes, the first diagnosis is not right. Doctors are smart, but they make mistakes. That is why it is important to make sure you know what is wrong. The most common misdiagnosed diseases are breast cancer, melanoma, gynecological cancer, colorectal cancer, and hematological cancer. This ranking is based on the analysis of over twenty different malpractice studies, which analyzed a wide variety of issues ranging from the percentage of adverse outcomes occurring at setting to the number of suits citing a particular disease.
The point is that your first diagnosis is not always accurate. You should get copies of your medical records and possibly a second opinion to confirm a diagnosis. If you get a second opinion that is different from the original diagnosis, you should call your insurance provider and request coverage for a third opinion from an expert in your illness or condition.
Step 13: Get a Second and Even a Third Opinion
You should consider getting a second opinion if you have a serious illness or if you do not feel good about your doctor or the plan they suggest. This is important so you can be sure you know what is wrong and what your choices are. Sometimes, your insurance company will even require a second opinion before they pay for treatment.
Do not worry about hurting your doctor’s feelings. Good doctors want you to get a second opinion. A second opinion is a good idea if:
• You have a life-threatening illness.
• You need a big surgery or test.
• You do not trust the first guess.
• You want to talk to a specialist.
• Your regular doctor cannot figure out what is wrong.
• You cannot talk to your doctor.
• You are not getting better.
• You need another surgery.
• You have a lot of medical problems.
You might also want to talk to a specialist to ensure you understand all your treatment choices. If possible, meet the second doctor in person. If it is not possible to meet in person, some hospitals, like the Mayo Clinic, will give you their opinion based on a review of your tests and records. While this expertise can be valuable, it is not the same as seeing a doctor in person. Ensure you write down all your questions for the doctor to provide a second opinion. You will likely need to send copies of your records to the second doctor.
If the second doctor’s opinion is different, do these things:
• Ask your first doctor or your health insurance provider for the name(s) of specialists. A good doctor will help you. If your doctor does not help, that is a sign you need a new doctor.
Tip: Make sure your doctor is not just sending you to a friend. You want a doctor who is an expert at treating your illness. If you need to find one yourself, ask your insurance company or search online. Do not go to a doctor from the same office unless you are sure they are an expert at treating your condition. Check with your insurance company to see if they will pay for the second opinion.
• Have your medical records sent to your new doctor.
• Write down your questions and get specific answers. Some important questions to ask are:
Could I have a different illness?
What are the usual and different ways to treat my illness?
Which treatments work best?
What will happen if I wait or do not get treatment?
What are the bad things about each treatment?
Will there be any side effects?
How will each treatment make me better?
How long will it take to recover?
If the second opinion is different, ask why. It is important to understand the reasons.
• Keep learning about your illness. Most importantly, ensure you get a written copy of the second doctor’s findings and know who to call if you have any questions after reviewing that report. You can also get a second opinion online from experts. Insurance usually will not pay for these types of second opinions, so make sure you know the cost. Some providers include:
eCleveland Clinic’s MyConsult: http://www.my.clevelandclinic.org
Econsults (Massachusetts General Hospital): http://www.econsults.partners.org
As you take each step, you want to make sure you are comfortable and have all the help and support you need.
Dr. You 
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