What Should You Do When You Get a Cancer Diagnosis?

If you, or a loved one, get a cancer diagnosis, the news is devastating. It’s scary to think about your chances of survival, and it’s scary to think about potential hardships of treatments. Your mind is spinning, and you can barely think straight. There are new medical terms to learn, decisions to make, and so many appointments to attend.

I know what this feels like – my 17-year-old son Zach was diagnosed with a terminal brain tumor in 2005. We were, and still are, devastated. But I am honoring Zach’s memory by helping others manage their own cancer and other serious illnesses.

One of the most important things we learned is that it’s critical for you to engage in your care. You can’t sit back and assume that others are taking care of everything. You must advocate for yourself at every step of the journey, even if you feel reluctant to do so.

Being engaged in the process can improve your quality of life and your patient experience. And it might even improve your outcome. Studies show that when patients don’t clearly understand medical information, they are more likely be hospitalized, take medications improperly, skip needed tests, go to the ER more often, and have poorer health outcomes.

Find a partner to help you on your journey.

Having cancer is stressful and overwhelming, and it’s much easier to cope with a trusted friend or family member by your side. Choose someone who can attend appointments with you whenever possible, help you make decisions, and have the “tough” conversations that may lie ahead.

Find the “right” doctor and hospital.

When you get a cancer diagnosis, your journey will likely start close to home. If you live near a large city, you might see a doctor at a university-affiliated teaching hospital. Or if you live in a rural area, you might see a doctor at a small community hospital.

As easy as it would be to use a local doctor and hospital, it’s important to understand that hospital choice can significantly impact cancer survival rates. In general, larger hospitals have more experience in treating cancer, including less common cancers. And they are more likely to have clinical trials available.

Interestingly, researchers found that receiving complex cancer treatment from a hospital where doctors don’t have adequate training and experience can increase the risk of death from surgical complications by 4x. Conversely, teaching hospitals with high volumes, along with high-volume surgeons, have superior long-term cancer survival rates.

Try to find doctors, and a hospital, with experience in your cancer. This might require you to travel to an expert at a high-volume cancer center. Although driving for hours, or getting on an airplane, can seem daunting, it can be worth your time and effort to get an expert opinion.

Keep in mind that you may not have to travel repeatedly to an expert doctor. Most expert doctors in high-volume cancer centers will coordinate your care with your local doctors. For instance, you may have surgery at a high-volume center, and receive the rest of your care closer to home. And you might even be able to have your first appointment by telemedicine from the comfort of your home.

How can you find the right doctor and hospital?

When trying to choose a doctor and hospital, you can either choose a hospital and then look for a doctor within the hospital’s network, or you can choose a doctor and then use the hospital with which he/she is affiliated.

Finding a hospital.

If possible, look for a hospital that is one of the National Cancer Institute’s 71 NCI-Designated Cancer Centers. The NCI chose these hospitals for their focus on research aimed at developing new cancer treatments. Doctors at these hospitals often work on innovative treatments and clinical trials, giving you access to treatments that may not be available at other hospitals.

You can also use these websites to find top-rated hospitals for cancer care:

• US News and World Report’s list of the 50 Best Hospitals for Cancer in the US.
• The Center for Medicare and Medicaid Service’s 11 PPS-Exempt Cancer Hospitals (PCHs)
• The Leapfrog Group’s lists of Best Hospitals and Best Teaching Hospitals

Since chemotherapy errors can be life threatening, ask if your hospital follows the standards for chemotherapy administration to reduce the risk of errors developed by the American Society of Clinical Oncology (ASCO) and the Oncology Nursing Society.

Finding a doctor.

To find doctors experienced in your cancer, try:

• Asking your primary care doctor for recommendations.
• Asking friends and family if they know anyone who has had your type of cancer.
• Reading scientific articles to find doctors who are conducting research in your cancer. Use PubMed.gov and ClinicalTrials.gov to find articles.
• Joining support groups for similar patients and asking the group about which doctors they would recommend.

When evaluating oncologists, ask him/her these questions:

• Are you board certified in your specialty?
• How many patients have you treated with my type of cancer?
• How many patients with my type of cancer are seen at this cancer hospital/center?
• What is your success rate for patients with my cancer?
• Are there clinical trials for my cancer type available at your hospital/center?
• What other specialists will be on my team?
• If you must travel for a doctor: Can I receive part of my care closer to my home?

If surgery is likely, ask potential surgeons these questions:

• How many surgeries similar to mine do you perform each year? (It’s important for a surgeon to have performed a minimum of 15 to 20 procedures per year.)
• What are your complication rates?
• What is your 30-day mortality rate after surgeries? (This is the number of deaths that occurred within 30 days after surgery, either in or out of the hospital.)

For more tips, read How to Choose a Hospital for Cancer Treatment.

The doctor’s personality and attitude matters too.

Yes, it’s critical to have a doctor who has experience treating patients with cancer like yours. But it’s also important to have a doctor who is willing to help you fight your cancer, even if the odds are slim. And you need and deserve a doctor who takes the time to answer your questions, values your opinion, and treats you with respect.

Get yourself organized – the sooner the better.

When you get a cancer diagnosis, your first thoughts do not involve a trip to an office supply store. However, you will have a seemingly endless amount of information to keep track of, as you attend countless medical appointments with various doctors, take a variety of medications and treatments, and undergo frequent testing.

Getting and staying organized throughout your journey can make it easier for you to:

• Remember and understand what you discussed with your doctor.
• Keep an accurate list of medications you take – prescription and non-prescription.
• Take your medications as prescribed.
• Minimize your risk of adverse drug interactions.
• Share information and coordinate care among your specialists.
• Avoid duplicate testing.

Importantly, realize you must be the “captain of your ship.” Each specialist on your team may not communicate or coordinate with your other doctors. And doctors don’t always have access to your medical records from other doctors, even if they all use electronic health records (EHRs).

So, it’s up to you to share important health information with every provider on your team, which is hard to do unless you have your health information recorded and organized.

How can you get yourself organized after you get a cancer diagnosis?

It’s never too late to start organizing your medical information – if you didn’t start at the time of diagnosis, start now!

• Get a notebook. Take detailed notes at every appointment – don’t even wait until you get to the car! Don’t expect that you will correctly remember everything you hear:
  • A landmark study found that 40-80% of what patients hear in the doctor’s office is forgotten almost immediately; and 50% of what is remembered is remembered incorrectly.
  • Research shows that receiving bad news, such as a getting a cancer diagnosis, can make it harder to process information and form memories.
• At home, use the notebook to record symptoms, side effects, and other important information.
• Always keep an up-to-date list of all medications with you, including over-the-counter medications.
• Keep all your medical documents together, organized, and accessible. This includes test results from blood work and imaging, clinical trial information, physical therapy instructions, etc.
• Take your notebook and your documents with you to every appointment. Don’t forget these items if you go to the emergency room.

Get the most out of every appointment.

• Ask questions about your diagnosis and treatment options until you understand (see below for a list of questions to ask). Importantly, don’t be afraid to ask your doctor to repeat anything you don’t understand. Read Understanding Medical Information Is Harder Than Most Realize.
• Ask for printed materials to help you understand your diagnosis.
• Repeat back to the doctor a summary of what you heard and ask him/her if you have a proper understanding of what was said.
• Use your phone to record appointments (ask first!). It will be helpful to listen again to make sure you heard everything correctly. And it makes it easier to share the appointment with others. For more information, read Should You Record Medical Appointments?
• Whenever possible, bring a trusted loved one with you to every appointment. However, if you must go alone, have a loved one attend via a phone or video call.

Questions to ask your doctor when you get a cancer diagnosis.

When you receive a cancer diagnosis, there is so much to learn and so many decisions to make. Here are some questions you can ask your doctor:

• How confident are you in this diagnosis? Any other possible explanations for what could be wrong?
• Was your tumor reviewed by a multidisciplinary tumor board? Will it be reviewed in the future? (These groups of experts evaluate pathology slides to discuss possible diagnoses.)
• What is the expected course of this cancer?
• If a biopsy, scan, or other testing is recommended, how will the results affect the course of treatment?  And are there any potential side effects of the testing? Can I see the images?
• Any reasons I should not get a second opinion?
• What are all the possible courses of treatments offered at this facility? Which one are you recommending? Why?
• What is offered at other facilities?
• Are there any clinical trials available here or at other locations?
• Can I get biomarker testing to help determine the best treatment options?
• Could my cancer be treated with immunotherapy?
• What are the possible short and long- term side effects of the recommended treatments? How will they be managed or reduced?
• How treatments will I need?
• When and how will we know if the treatment is working?
• What will happen if the treatment isn’t effective?
• What about using alternative medicine practitioners, such as acupuncturists, reiki practitioners, dietitians, and physical therapists?

Importantly, note that at any point in your journey, if something doesn’t seem right, speak up!

Special concerns for older cancer patients.

As we age, our risk of cancer increases. In fact, the median age of patients newly diagnosed with cancer is 66 years old.

Yet older patients are “vastly underrepresented in research that sets the standards for cancer treatments“. In fact, researchers found that around 42% of patients with cancer are 70+ years old, but only 10-24% of clinical trial participants are that age.

Therefore, the information learned about the risks and benefits of cancer treatments is based on younger, healthier patients. This knowledge gap often leads to the overtreatment or undertreatment of older cancer patients. Unfortunately, this leads to disparities in health outcomes between older and younger cancer patients.

What can older patients do?

Importantly, ask your doctor about the impact of your age, and any of your other health issues, on your treatment options. Don’t be afraid to mention what you’ve read here about the lack of older patients in clinical trials.

Additionally, ask your doctor if he/she uses the comprehensive geriatric assessment (CGA) tool to tailor treatments for older patients. This tool helps doctors choice treatment options, including chemotherapy dosing, by evaluating the physical, emotional, cognitive, and social health of a patient.

One study found that the CGA tool improved patient satisfaction, while a follow-up study found the tool also improves decision-making and reduces cancer treatment toxicity.

Get a second opinion.

In all situations, if time permits, get a second, or even a third opinion, preferably at a different hospital. Don’t worry, you won’t offend your doctor. In fact, your first oncologist might be able to provide the names of other oncologists who have experience with your cancer.

Why are second opinions so important? You might learn about more effective, and/or easier to tolerate, treatment options. When you get a second opinion, ask this doctor the same questions you asked your first doctor.

Interestingly, a study at the Mayo Clinic found that up to 88% of patients who get second opinions at Mayo Clinic receive a new, or refined, diagnosis which changes their care plan. On the other hand, only 12% receive confirmation that their original diagnosis was complete and correct.

And even if you don’t receive any new information, a second opinion can provide ease of mind that your care plan is the right choice.

Importantly, second opinions are not only for the time of your initial diagnosis. At any time in your journey you can decide you want another opinion. It’s your right.

With the advent of technology, getting a second opinion is easier than ever. You can likely schedule a telemedicine appointment with an oncologist who can view your online records to see your history, test results, and other pertinent information.

For more information, read Why Are Second Opinions Important?

Do your own research.

Although you will likely learn quite a bit from your own doctor, it’s hard for doctors to keep up with the onslaught of information. If possible, it’s great if you can research your cancer and treatment options.

For some patients, it’s too overwhelming to jump right into online research. If you don’t feel up to it, consider asking a trusted friend or family member to help you.

Before you begin your online search, realize there is a lot of misinformation online, some of which can be dangerous. Only use reputable sites, preferably those run by either large nonprofit organizations or the US government. Good sites to start with include the American Cancer Society and the National Cancer Institute.

In addition to those two sites, you can read scientific studies to learn about possible treatments that even your oncologist might not know about. Although the articles on these sites are scientific and can be hard to understand, PubMed.gov and ClinicalTrials.gov can provide a wealth of information on past research.

However, realize that some information on side effects might be omitted, even in highly respected medical journals. Unfortunately, the lack of full transparency can make it hard for doctors and patients to make informed decisions.

Additionally, if you want to learn about current clinical trials for your cancer, visit the Zaggo Resource page for a list of organizations that can help you find potential clinical trials.

When doing your research, take careful, detailed notes. Keep a record of where you read items of interest so you can easily go back and look it up again. Importantly, discuss your findings with your doctor!

Watch our for scams.

When you get a cancer diagnosis, particularly one with a grim prognosis, it can feel very tempting to consider all options, even ones that appear questionable. However, you must tread carefully because there are people and companies who prey on cancer patients, offering false hope and ineffective, sometimes dangerous, treatments.

Dr. Kerry Forrestal offers advice on how to avoid falling for cancer-related scams. Consider his tips when evaluating potential treatments:

The more anything promises, the less it is likely to deliver.

Absolute words are rarely used in true science. Be wary of words such as “proven,” “cure,” “unarguable,” “conclusive,” or “settled”. Additionally, words such as “cover up” and “conspiracy,” and phrases such as “your doctor (or government, or pharma) doesn’t want you to know” are indicators of a scam.

Instead, realize that real science uses tentative words, such as “associated,” “may,” “correlate,” “support.”

Be involved in the treatment decisions.

Understanding your treatment options is an important part your cancer journey. Yet in a large survey cancer patients, only 53% of respondents reported feeling sufficiently involved in making decisions about their care.

Additionally, it’s important that your doctor understands your treatment goals. For instance, do you want to extend your life at any cost? Or do you want to live without life-changing side effects, even if it means a shorter potential lifespan. As important as this is, in a study of patients with neuroendocrine tumors, only 51% thought they had the same treatment goal as their doctor.

What should you do?

First and foremost, actively participate in the decision-making process. Research shows that patients who actively participate in decision-making are better informed and understand their care options better. Another study found that shared decision-making may improve patient outcomes.

Ultimately, the decision about how to move forward is yours, so don’t let the doctor make a treatment decision without your approval. When choosing a treatment option, think about the clinical evidence as well as your own values and preferences. Consider these factors:

• Expected outcome.
• Type and length of treatment.
• Success of treatment in similar patients.
• Possible side effects and the potential impact on your life.
• Your likelihood of complying with treatment requirements.
• Location of treatment.
• Insurance coverage, or expected cost, for proposed treatment.

Read The Importance of Shared Decision-Making in Healthcare for more information.

Additionally, if you’re considering a clinical trial, read What You Need to Know About Clinical Trials Before You Sign the Dotted Line.

Be a compliant patient.

Following your doctors’ recommendations can help you get the best outcome possible. Therefore, never stop treatments or medications without talking to your doctor, even if you think a medication or treatment is making you feel terrible. And don’t skip tests – they are an important part of the process.

Stay on track with medications.

Importantly, when you get a new medication, make sure you know how/when to take it. And set up a system to keep yourself on track.

For detailed tips, read Reduce Your Risk of Medication Errors.

Take proper care of your port.

If you have a port (also called a port-a-cath) surgically implanted to make treatments and blood draws easier, it’s important to reduce your risk of a potentially serious infection. Since the tip of the port is located right outside your heart, it’s important to keep the port site bacteria-free by practicing proper hygiene. Additionally, notify your doctor if you see any signs of issues near the port site, including redness, inflammation, fever, pus, or peeling skin.

Get emotional support.

Getting a cancer diagnosis is stressful – for the patient and the family. Importantly, cancer and depression are biochemically linked, making it harder for cancer patients to stay positive.

If you’re feeling stressed, you are not alone. In a survey of cancer patients, 69% of respondents said they needed psychological support during and/or after their treatment.

As hard as it may feel, having a positive attitude can help you better manage your cancer journey. If you remain upbeat and have hope, you are more likely to get second opinions, ask questions, and advocate for yourself, all of which can help you get the best care possible.

On the other hand, the pressure from others to “stay positive” can be overwhelming. You need to find a safe space to share any negative feelings.

If you feel depressed, anxious, or stressed, get help from a mental health professional. Your oncologist can likely refer you to a social worker or therapist who has experience helping cancer patients. Additionally, a palliative care team can help you reduce your stress (see below for more information).

In addition to professional help, you can seek support from your community, or you can join support groups of patients coping with a similar diagnosis, or both.

Find a group with similar patients.

Connecting to patients with a similar diagnosis can provide much-needed emotional support. In addition, this group can also be a source of information regarding treatments, side effects, and other medical matters.

Look for a support group of patients with a similar diagnosis as you:

• Ask if your hospital has a support group.
• Search on Facebook for a group.
• You may be able to find a group on Inspire.com, PatientsLikeMe.com, or MyLifeLine.org.
• Look for local or national organizations that advocate for your type of cancer.

Get support from your community.

When you get a cancer diagnosis, you need support. You can’t do it yourself. Reach out to friends, family members, and others for help and emotional support. Your community wants to help you – let them!

Setting up a webpage on one of several patient-based websites will make it easier to communicate with your friends and family. And it will save you from providing updates countless times on the phone, while also making it easier to coordinate any help you need. Try CaringBridge.org, LotsaHelpingHands.com, or MyLifeLine.org.

Although there are many ways your friends and family can support you, you’ll get the help you need if you ask for it specifically. For example, you may want someone to:

• Go to medical appointments with you, or simply drive you to/from appointments.
• Visit you in your home, which could involve watching a movie together, playing a game, or just sitting and chatting. Whatever works for you.
• Cook dinner for you.
• Do errands for you (grocery store, pharmacy, etc.).
• Help you around the house with childcare, cleaning, laundry, lawn mowing, shoveling snow, etc.

Try to adjust to your “new normal”.

Getting a cancer diagnosis can make it hard for you to think about anything else. However, your life will be less stressful if you can push cancer aside whenever possible. Try not to only define yourself as a cancer patient – you are still “you”.

Additionally, make time to experience things you enjoyed before you got a cancer diagnosis, or even try some new activities.

Address financial concerns.

Many cancer patients are surprised by the financial impact of cancer. In addition to medical expenses, you may face travel expenses, reduced income, and other financial stressors.

Here are some suggestions for those who need financial help:

• Patients and family caregivers – speak with your boss about a reduced or altered work schedule.
• Visit Cancer and Careers – they offer free publications, support groups, and educational seminars for employees with cancer.
• Seek financial support from organizations that help cancer patients and their families. For a list of such organizations, visit our resource page for cancer patients, our page for financial help for medications, and our page for financial help for patients and families.
• You, or someone on your behalf, can start a GoFundMe campaign to help you cover your expenses. And don’t forget to spread the word on social media – you may even get donations from strangers.

What if your insurance plan won’t cover your treatments?

If you get a cancer diagnosis, medical bills can be overwhelming. Finding out your insurance company won’t cover your treatments can make it even worse.

Depending on your insurance and what doctor, hospital, and/or treatment you choose, you may find that your insurance won’t cover all or some of your treatment, particularly if you plan to use an out of network doctor/specialist.

If you are worried about coverage, and time permits, call your insurance company before seeing a new doctor or receiving any kind of treatment to ask about coverage. If your insurance company will not cover your proposed doctor and/or treatment, you can try to appeal the decision.

Similarly, if your claim is denied after you’ve seen a doctor or received a treatment, you can appeal the decision.

Unfortunately, filing an appeal does not guarantee you will receive coverage. And the appeal process can be overwhelming. For tips on filing an appeal, read these articles by JDRF, Insurance.com, or Forbes.

Finally, if you can’t make any progress, you can hire a lawyer, but realize the legal fees will be high. However, it may be worth it.

Cancer caregivers need support too!

Taking care of a loved one with cancer takes an emotional and physical toll on family caregivers. When dealing with a loved one’s cancer journey, it’s easy to neglect your own self-care. Not only can family caregivers feel overwhelmed, recent research shows there is an increased risk of psychiatric disorders among spouses of cancer patients.

For tips, read Help with the Stress of Caregiving and Can Caregiving Make You Sick? If you have concerns about your own mental health, talk to your doctor.

Consider hospice and palliative care services.

Many people confuse palliative and hospice care. Briefly, hospice care helps those at the end of their lives. Palliative care, which can be a part of hospice care, focuses on helping patients at any stage of an illness. Importantly, palliative care allows you to continue treatment.

I suggest you request palliative care services because they can help you in a variety of ways. For instance, they can help manage symptoms and side effects, coordinate your care, and make decisions. To learn more, read Benefits of Palliative Care.

If you or a loved one are near the end-of-life, ask about hospice care. Learn more by reading Pros and Cons of Hospice Care.

ZaggoCare can help you when you get a cancer diagnosis!

 

Let the ZaggoCare System help you when you get a cancer diagnosis.

The key element of the System is our ZaggoCare Guide “Practical Tips and Tools for Managing an Illness or Injury”. The Guide can help you or a loved one know what to do at every step in the process. You’ll learn:

• Questions you may not even know to ask.
• Strategies for taking medications correctly.
• Tips for organizing medical information.
• Tips for reducing your risk of medical errors.
• Recommendations for coordinating care among specialists.
• And more…

And ZaggoCare’s organizational tools keeps all your important medical information organized and handy. Order a ZaggoCare System for yourself or a loved one today!

Learn More…

Certainly, there is a lot to deal with when you get a cancer diagnosis. Read these posts for more information:

• Can Ethnicity and Race Impact Cancer Survival?
• Does Where You Live Impact Cancer Outcome? Sadly, Yes.
• How to Improve Your Surgical Outcome.
• How to Get the Medical Care You Want.

NOTE: I updated this post on 2-9-23.