Making Skillful Decisions about Cancer Treatment

Diagnosis

An accurate diagnosis is critical to your treatment. Even experts can have trouble distinguishing one type of cancer from another and may miss rare diseases. 

Even when you find a cancer team you trust, take the time to understand your diagnosis.

You have a right to look at your medical chart and diagnostic tests. You also have a right to understand them. Medical language is difficult for most people to understand. That is normal. Do not be afraid to ask questions, use the resources we provide, seek a second opinion, and consider finding an advocate or patient navigator to help you make sense of your medical care. Not only does the diagnosis have to be right, but you have to trust that it is right.

You can take time to review the results that led to your diagnosis and ask questions until you understand the results of tests that were used, which may include these: 

From our experience, we offer some questions you may find useful to ask your doctor and yourself. The answers may not be easy to hear, but they can help you feel like you are on the right path.

Suggestions to understand your diagnosis

Ask about new diagnostic tools

A lot of new diagnostic tools are being used to support more common ones like X-rays, MRI, CT and PET scans. Examples of the new tools include comprehensive tumor profilinga laboratory test to check for certain genes or gene mutations, proteins, or other biomarkers in a sample of tumor tissue; tumor profiling may be used to help plan treatment and predict whether cancer will come back or spread to other parts of the body and genetic testingthe process of analyzing cells or tissue to look for changes in genes, chromosomes, or proteins that may be a sign of a disease or condition, such as cancer; genetic testing may be done on tumor tissue to help diagnose cancer, plan treatment, or find out how well treatment is working. Some are standard while others may not be. Some require biopsies of the tumors. Ask your team which tools may lead to the best match with treatments.

Consult others if your diagnosis contains any uncertainty

Consider your doctor’s diagnosis as one opinion. Your doctor has one opinion among many about what your cancer will mean for you, your quality of life, and your life expectancy. Predicting life expectancy, for example, is a recognized challenge for most doctors. Understand their viewpoint; ask questions; and seek second opinions when you feel you should.²Taylor P. Can doctors really predict how long one has to live? Healthy Debate. June 14, 2016. Viewed August 28, 2021; Selby D, Chakraborty A et al. Clinician accuracy when estimating survival duration: the role of the patient’s performance status and time-based prognostic categories. Journal of Pain and Symptom Manage. 2011 Oct;42(4):578-88; Chen P. Why doctors can’t predict how long a patient will live. New York Times. January 19, 2012. Viewed August 28, 2021. 

Places where a second opinion can be helpful:

• Pathology report: You can ask for your pathology to be reviewed by another pathologist if there is a question 
• Imaging: You can ask for any of the studies that were completed to determine your diagnosis or stage be reviewed by another radiologist 
• Finding specialists: There are some oncologists who specialize in a certain cancer type. For instance, if you have lung cancer there are thoracic oncologists (doctors who specialize in cancers in the chest) 

Understand your diagnosis 

You may be told about your diagnosis in technical, specialized language that is confusing. We urge you to make sure you understand both the diagnosis and what it means for you and your treatment plan. Can your cancer be cured and how? Or is the plan to manage your symptoms if you are diagnosed with an incurable cancer?

Questions for your doctor

• What is my diagnosis? What information was used to make my diagnosis?
• How confident are you in this diagnosis? What else could this be?
• Are there any new diagnostic tools to consider that might lead to a different or more certain diagnosis?
• Does my case seem usual or unusual? Why?
• What does this diagnosis mean for how long I will live and the quality of my life?
• Are you an oncologist who specializes in treating this type of cancer? If not, are there oncologists who specialize in treating this type of cancer?

Questions for yourself

• What do I know about my diagnosis? How well do I understand it? Could I explain it to someone else if they were to ask me?
• Would having someone go with me to appointments to keep a record be helpful?
• What does this diagnosis mean to me?
• Do I feel like I need a second opinion?
• Has my doctor told me what will happen while I live with and am treated for cancer? What do I think the outcome will be?

Options

You may have many more choices about how to treat your cancer than someone with an identical cancer 20 years ago. Cutting-edge treatments such as immunotherapya type of cancer treatment that boosts the body’s natural defenses to fight cancer using substances made by the body or in a laboratory and targeted therapya type of cancer treatment that uses drugs or other substances to precisely identify and attack certain types of cancer cells provide new options. In some cases, laboratories can analyze cancer tissue genetically to help guide treatment. Precision medicinean emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person looks at your genes, environment, and lifestyle to create a treatment tailored for you. 

Chemosensitivity testing is one newer option. It involves lab analysis of live tumor tissue to test your cancer’s response to different treatments. It is seldom used by oncologists for initial treatment, in part because oncologists are obligated to try the standard treatment protocol first, and deviations from that protocol may not be covered by insurance. 

Oncologists usually wait to see if the standard treatment is effective before considering chemosensitivity testing. This is usually a cost-effective approach, as some types of chemosensitivity testing require shipping live tissue samples to specialty labs. You cannot do this on your own—your oncologist or surgeon will need to participate in collecting live tumor samples, and shipping live tissue to a far-away specialty lab can be very expensive. If your cancer responds well to the standard treatment protocol, this expense and potential delay in treatment may not have been a good investment. 

However, if your cancer has not responded to first-line chemotherapy, chemosensitivity testing may be helpful for deciding on your next treatment approach. Before going to the trouble and the expense of chemosensitivity testing, talk with your oncologist about whether they would potentially use test results. There’s little sense in paying for testing if your oncologist will not use the results.

Considerations about your treatment choices

How should you be treated? 

Treatment approaches can range from aggressive to conservative. Where your treatment falls in that range can make a difference in how long and how well you live. Radiation, surgery, and chemotherapy can be hard on your quality of life but they may give you the best chance to live longer. There are other times therapy means you may have a reduced quality of life, without gaining much life expectancy.³Azvolinsky A. Conservative vs aggressive treatment in older prostate cancer patients. Cancer Network. May 27, 2013. Viewed August 31, 2021; Daskivich TJ, Fan KH et al. Effect of age, tumor risk, and comorbidity on competing risks for survival in a U.S. population-based cohort of men with prostate cancer. Annals of Internal Medicine. 2013 May 21;158(10):709-17. Conservative treatments, such as monitoring low-risk cancers, may help you feel better day-to-day but may give the cancer a chance to spread. You have to balance what you are willing to sacrifice regarding your quality of life with the chance of living longer.

Whatever the approach, it is your experience and your life. Think about your: 

• Values
• Goals
• Priorities

How well does the chosen treatment match these parts of your life? Discuss this match with your current cancer team and any team that may provide a second opinion.

Where should you be treated?

If your cancer is common and the treatment is well established, community hospitals typically do a good job. If your cancer is rare and your treatment plan is complex, then higher-tier hospitals or comprehensive cancer centers may care for you better. 

“Higher-tier hospitals become more important as care becomes more complex,” says Dr. Otis Brawley. “Tertiary care centersa hospital that provides tertiary care, which is a level of health care obtained from specialists in a large hospital after referral from the providers of primary care and secondary care also tend to be much better in taking care of the out-of-the-ordinary, unusual cancers.”⁴Can your community hospital handle … this? US News & World Report. July 20, 2015. Viewed June 30, 2021.

Who should treat you? 

It is important that you believe that the doctors who diagnose and treat your cancer are competent. You need to feel that you can trust them—even when you disagree with them or want to explore other options. And you deserve to feel respected and led by practitioners that prioritize your care. If you don’t feel comfortable with your oncologist or anyone on your care team, keep looking until you find one that you trust. In our experience, having confidence and trust in your care team can be an important part of your healing.

If you are considering an integrative approachin cancer care, a patient-centered approach combining the best of conventional care, self care and evidence-informed complementary care in an integrated plan, finding an integrative oncologist experienced in your type of cancer would be ideal. But this option may not be available. In such a case, consider broadening your search to include a conventional oncologist competent in your cancer type and who is open to working with general integrative medicine physicians, oncology naturopathic physicians, and other complementaryin cancer care, complementary care involves the use of therapies intended to enhance or add to standard conventional treatments; examples include supplements, mind-body approaches such as yoga or psychosocial therapy, and acupuncture practitioners. Building such a team will bring expertise in treating your type of cancer with supportive integrative approaches.

Do you fully understand the expected result of the recommended treatment?

Your doctor may discuss treatments and their results for you in terms of risk. For example, a doctor may say that an experimental drug doubles your chance of living longer compared to another treatment. But if the drug’s side effects are much worse for you than the other treatment, then that may not be worth it to you.

Doubling your chance of survival is relative. Does it double your 5-year survival from 1% to 2% or from 40% to 80%? In both examples the chances of survival are doubled but have very different meanings. You should ask for clarification if you don’t understand what your doctor means when you are given statistics. The risk-benefit ratio needs to be meaningful to you. 

Is cost a factor?

Conventional treatment is typically very expensive. In the US, even with health insurance coverage, many people face financial difficulties because of cancer costs.⁵American Society of Clinical Oncology. The state of cancer care in America, 2015: a report by the American Society of Clinical Oncology. Journal of Oncology Practice. 2015 Mar;11(2):79-113; Gilligan AM, Alberts DS, Roe DJ, Skrepnek GH. Death or debt? National estimates of financial toxicity in persons with newly-diagnosed cancer. American Journal of Medicine. 2018 Oct;131(10):1187-1199.e5. You may wish to research treatment options and how each treatment affects you financially. Equally good treatments may have significantly different costs to you depending on your insurance coverage and other factors.⁶Nelson R. High cost of cancer drugs does not reflect clinical benefit. Medscape. May 13, 2020. Viewed May 16, 2020; Vokinger KN, Hwang TJ et al. Prices and clinical benefit of cancer drugs in the USA and Europe: a cost-benefit analysis. Lancet Oncology. 2020;21(5):664‐670. Ask your clinical team if you can get clarity on your direct cost depending on the treatment you choose.

These consultations will add some expense, but taking this step will help you choose complementary therapies that don’t interact with your treatment or any other preexisting medical conditions in a way that causes harm. Consultations will also help you narrow options to therapies most likely to be effective and cost-efficient. Care from complementary or alternative treatment clinics or practitioners typically is not covered by insurance.

How can financial factors influence your care?

Due to the high cost of cancer treatment, both you and your doctor want the treatment you receive to be covered by insurance as far as possible. Reimbursement to the doctor for prescribing and giving the drugs means lower costs to you.

In the US, insurance tends to cover FDA-approved drugs and other treatments that are recommended in established, conventionalthe cancer care offered by conventionally trained physicians and most hospitals; examples are chemotherapy, surgery, and radiotherapy medical guidelines and protocolsa package of therapies combining and preferably integrating various therapies and practices into a cohesive design for care. These guidelines are created by organizations such as the National Comprehensive Cancer Network (NCCN) and the American Society of Clinical Oncology (ASCO).

Your doctor may be unwilling to prescribe drugs that are outside the guidelines. A doctor’s reluctance can come from many factors, including limited evidence of effectiveness or safety, risks of liability, hospital/clinic policies, or the additional work in convincing your insurance company to cover the cost. Some doctors may be more willing to prescribe outside protocols than others.

Are financial factors influencing your cancer care?

Doctors work long hours to provide the best care that they can in a complex medical system. In the United States, that environment includes a for-profit healthcare system that may incentivize some kinds of care or treatments over others. These incentives can influence decisions about which treatments to provide.⁷Nelson R. Oncologists getting 6% of drug price is ‘financial conflict.’ Medscape. March 7, 2018; Bryant M. Cancer treatment choices may be skewed by financial incentives, study shows. HealthcareDive. January 4, 2019. Viewed June 10, 2021; Mitchell AP, Rotter JS et al. Association between reimbursement incentives and physician practice in oncology: a systematic review. JAMA Oncology. 2019 Jun 1;5(6):893-899; Rapaport L. Cancer drug choices tied to drugmaker payouts to doctors. Reuters Health. April 9, 2018. Viewed March 25, 2022; Mitchell AP, Winn AN, Dusetzina SB. Pharmaceutical industry payments and oncologists’ selection of targeted cancer therapies in Medicare beneficiaries. JAMA Internal Medicine. 2018 Apr 9. Even though your oncologist may not be focused on these incentives, they may still have some influence on your care. 

Your oncologist is an expert and partner in your care. You should feel confident that your team is prioritizing you when deciding on your treatment plan. Confidence includes understanding which factors are driving your team’s treatment decisions. Ask questions if you’re not sure.

You can use reputable websites and literature to do your own research about the recommended protocols as well as other choices in conventional care.

Helpful links for information on conventional care

What is Cancer ›

Cancer Types ›

Cancer Treatment ›

Side Effects of Cancer Treatment ›

Find NCI-Supported Clinical Trials ›

NCCN Guidelines for Patients ›

Treatment by Cancer Type ›
For health professionals

Understanding Your Diagnosis ›

Cancer A-Z ›
Find information on your type of cancer

Treatment Types ›

Survivorship: During and After Treatment ›

Chemotherapy Drugs and Drugs often Used During Chemotherapy ›

Managing Side Effects ›

Patient’s Guide to the Cancer Experience—Cancer Diagnosis and Treatment ›

Do you need an advocate?

Your cancer care happens in a huge, complex bureaucracy that involves hospital administration, insurance coverage, legal limitations, financial institutions, research conventions, and more. 

Your doctors, nurses, and other healthcare professionals dearly want to help, but their job is to help you figure out your health. They are not trained—nor do they always have the tools or time—to navigate insurance and the complexities of the healthcare system. Sometimes someone who is part of the cancer care team can help with the logistics of your care. Sometimes you are left to figure out these complexities on your own.

How well can you live with side effects? 

Side effects can impact your life substantially.

Before you start your treatment, ask your cancer team what you can expect from your therapy. 

• What side effects can I expect?
• How long do side effects typically last?
• How severe might they be?
• What can I do to prevent, reduce, or treat side effects?

Talk with other people who have gone through your treatment. Online forums and cancer support centers can connect you with others who can share their experiences with you.

Also see complementary therapies › and self-care practices › that can reduce side effects. Incorporating complementary therapies and self-care practices may allow you to complete your conventional cancer treatment with a higher quality of life. 

If your expected burden of side effects is high in comparison to the expected benefit of treatment, you might want to check if alternatives to your proposed treatment might be effective with fewer side effects. Discuss all your options with your doctor.

What if your cancer cannot be cured? 

Experimental treatments may also be available to you. If you and your team think that a clinical trial or experimental treatment may be right for you, make sure you understand exactly what is involved before you participate. Discuss with your oncologist how much it may help you, how it may impact your finances, your care, and your daily life. Whether to participate in a clinical trial or not is always under your control.

What about late-stage cancers?

“Hearing your oncologist say ‘there is nothing more that we can do for you’ is undeniably traumatic and distressing. What he or she is essentially saying, however, is that there is nothing left in the conventional arsenal that can be done to eradicate the cancer. But this doesn’t necessarily mean that there is nothing else that can be done.”⁸Keith Block, MD, Director, The Block Center. What to do when there’s “nothing left to do.” Life Over Cancer Blog. May 20, 2013. Viewed June 30, 2021.

Questions for your doctor

• What is the goal of this treatment?
• What are the side effects? 
• Why are you recommending this treatment plan?
• How will you assess my progress?
• What other options do you suggest?
• What options are you not suggesting and why?
• What tests can help guide my treatment choices?
• Who should I consider asking for a second opinion?
• What happens if I choose a different treatment?
• Are you willing to support my use of complementary care or to collaborate with my complementary care practitioners?

Questions for yourself

• Do the medical options work with or against how I want to live?
• What other options should I consider? Have I thought about including self care and complementary therapies—such as changing my diet, taking supplements, or practicing yoga—in my treatment plan?
• Have I done enough research and consulted enough with other experts and people I trust?
• Am I overwhelmed, unfazed, or empowered? How is my attitude affecting my decisions?

Decide

Your instinct may be to leave cancer treatment decisions largely to the experts since they have the expertise about cancer. Remember, though, they are not the experts about you as a person. 

Further, many of the words medical teams use, the tools they employ, and the logic they follow can be hard to understand. The highly technical and complex world of cancer research may seem to say that you should just trust the experts to tell you what to do. We do not feel this is the case. 

If you do not understand something your cancer team is saying, you are not alone. Most people have trouble understanding what doctors say. It is normal to be confused sometimes. Your team is not trying to confuse you. They may not realize they are using technical or unclear language. Ask about any term or procedure you do not understand. 

Your doctor and other experts probably know more about cancer and its treatments than you do, but you know best about how your life is being changed by cancer. Your diagnosis, treatment, and cancer are about you. The cancer treatment decisions you have to make are about your values:

• The value of living well 
• The value of living long 
• What a drug’s side effects mean to your life
• If trading better life for a longer life makes sense for you

We are not saying to ignore your cancer team or that you will always be right if they disagree with you. But we are saying that you must always be part of the decisions. You must add the facts about your goals and priorities to any recommendations. Your cancer treatment decisions should not be made for you, but with you.

To help you decide on your treatment, we offer some suggestions.

Considerations in making your decision

Look at the evidence

Some cancer treatments have solid evidence behind them, making them a good choice for you. Others don’t. Some drugs work well for some but not all cancers, or for some but not all people.

As new evidence comes to light, we all—you, us, your oncologists—learn more about how your cancer responds to different treatment options. We need to be willing to explore, assess, and adjust.

After looking at the evidence, you may find that it is not solid enough for you to make a confident decision. In this case, you have other tools.

Consult your intuition 

Along with available scientific evidence, you have a wealth of personal evidence. You have years of experience with yourself, and intuition is a powerful way of tapping into that knowledge. But as with medical evidence, you should not simply take your intuition as the truth. 

You also have biases and blind spots that can lead to poor decisions. Ask yourself:

• Am I reluctant to get treatment at a certain facility or from a specific provider, or even at all?
• What is my reluctance based on—personal experience or biases due to general mistrust because of how people like me have been treated in the past?
• Do I have preferences for or against doctors of a certain race, age, sex, or ethnic or religious background?
• Do I have evidence to support my biases? 
• Are these biases helping or hurting my decisions?

Being skeptical is okay, but when you find your truth, hold on to it. This is your body, your life, your illness, and your healing. Your feelings and intuition matter and can help you make better decisions. Do not ignore them but investigate where they are coming from. We encourage you to assess whether they are a helpful part of what leads you and your team to a decision.

Questions for your doctor

• If it were you, what information would you use to make this decision and why?
• How does this decision limit my choices in the future?
• What are the side effects? 

Questions for yourself

• How have I made my best decisions in the past? How can I do that now?
• What are my biases, good or bad, and are they influencing my decision? 
• How much should I trust or not trust my medical team? Is there another team I trust more?
• How does this decision make me feel? 
• What is my gut, my instinct, my spirit telling me about my choice?
• Can my body handle the effects of my decision?

Decision aids

Medical decision aids—print or online tools that can guide your decision process—can be very helpful in making choices. Research shows that people using decision aids have better knowledge, accuracy of risk perceptions, lower conflict over their decisions, and congruence between informed values and care choices¹⁰Stacey D, Légaré F et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews. 2017 Apr 12;4(4):CD001431; Trikalinos TA, Wieland LS, Adam GP, Zgodic A, Ntzani EE. Decision Aids for Cancer Screening and Treatment [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2014 Dec. Report No.: 15-EHC002-EF. You might ask your oncology team if they recommend a decision aid, or you can look at these options:

Act

You have taken some time to breathe and let the shock wear off. You have weighed your options and confirmed your diagnosis. You have evaluated the evidence and included your values, goals, and intuition as you made a decision. Now it is time to act, including assigning roles and responsibilities to your cancer team.

Remember, you are not just a person with cancer. You are at the center of a medical team that can include doctors, therapists, social workers, advocates, clergy, family, friends, and many others who share a commitment to helping you. You must figure out who will do what based on their strengths and your trust of them. Your doctor, for example, may not be best for giving you the emotional support you need. Your family and friends may give you that, but they may not know enough about hospitals to help choose your treatment. Consult with each member of your team. Make sure your expectations are clear and match what each person can and wants to do. It is your cancer experience, but you do not have to carry the weight alone.

Who and what will you need

Building a support team

Treatment can take center stage when you are thinking about the support you will need. Questions to consider: 

• How will you get to and back from treatment? 
• Who will monitor you for serious side effects from drugs in case you need to go to the emergency room? 
• Who will take you to the emergency room if you need to go?
• How will your children be cared for if you wake up feeling sick? 
• Who will pick up prescription medication for you? 
• Do you need help with meals? 

You may need help with these things and more to get through a treatment plan that may go on for many months or longer.

Supporting your support team 

Be kind to the people who are helping you heal. Like you, they can be tired and stressed. Like you, they can be scared and uncertain. They may also feel that they are not allowed to have these feelings because they need to stay strong for you. Can you let them know that their health and mental well-being is as important to you as yours is to them? You can be kind without compromising your own needs. Can you be compassionate while remaining clear about what you need and what you don’t?

Managing side effects 

Many options can help you manage side effects of your treatment. Just as with cancer treatment, options include conventional carethe care offered by conventionally trained physicians and most hospitals; examples are prescription drugs and therapies such as ice packs, self carelifestyle actions and behaviors that may impact side effects; examples include changing your diet or avoiding alcohol, and complementary careexamples include supplements, mind-body approaches such as yoga or psychosocial therapy, and acupuncture. We review the uses and effectiveness of self care and complementary care.

Involve your cancer team in your decisions, and especially check for interactions involving any drugs, supplements, and natural products you use for this and any other condition. These are not separate from your cancer treatment but should complement it as an integrated whole.

Healthy living to address cancer

Your treatment focuses on taking care of your cancer. Taking care of yourself can give your treatments the best chance to work.

Questions for your doctor

• When should I call you?
• In what situation(s) would I need to go to the emergency room?
• If I’m considering complementaryin cancer care, complementary care involves the use of therapies intended to enhance or add to standard conventional treatments; examples include supplements, mind-body approaches such as yoga or psychosocial therapy, and acupuncture approaches:
  • How open are you to complementary approaches, such as taking supplements during treatment, or using acupuncture to manage certain side effects?
  • Are you willing to communicate with members of my cancer team, such as complementary care providers, therapists, and clergy, so that all of my care team works together?

Questions for yourself

• Do I have the support I need? 
• How is my medical treatment going? Do I need to add members to my team or adjust their roles and responsibilities?

Review

You and your team have done a lot of difficult work that should be appreciated. You managed the shock of your diagnosis. You actively engaged with the people and institutions who treat your cancer. You chose your team and your treatment. You thought about what else was out there to complement your plan, what else was available to help you heal, and you integrated it safely into your treatment plan.

Be proud of yourself and keep going.

Revisit your decisions to make sure they are still right. Things change. Maybe a side effect is too severe and requires a new treatment plan. Maybe you’ve surprised yourself by being stronger than you thought, and you want to exercise more. You may come to value things more or less than you did at the beginning. Making sure that you are still on the best path for you means continuing to review your decisions and continuing to make sure you are the center of your treatment.

Considerations as you pursue your options

Know when to stop treatment 

Sometimes, the physical, emotional, and spiritual price of treatment is too much while the potential benefit—even if everything goes right—is too little. You should consult widely and think carefully before you take this step, but you are the one who knows best. Stopping therapy doesn’t mean you’ve given up on life. Instead, it can mean that you will pursue your life goals by other means.

Healing happens in more than the body

Cancer can force you to think about your life and how you want to live it. You may come to value things differently. Maybe family and friends become more central. Maybe you decide that kindness and compassion will define you. Whatever your conclusions, this time—as hard as it is—can offer a chance for tremendous emotional, mental, and spiritual healing.

Healing can happen in every moment

Healing happens when bodies move, when relationships deepen, when beauty enters, when love abides. Look beyond your treatment to life’s medicine cabinet for healing power and consider using  your intuition to choose what is right for you at this moment.

The healing mindset is one that requires constant learning. Listen to yourself and be humble enough to accept help with what you don’t know. Listen to yourself and be resilient enough to find another path when your way is blocked. Listen to yourself and trust your heart, mind, and spirit. Trust yourself to learn, to adapt, and to heal, no matter the outcome.

Questions for your doctor

• How often will I be monitored and how?
• Is my plan working to cure my disease or manage my symptoms? Why?
• How well is my plan for my side effects working?
• What aspects of my plan do I need to review? How often?

Questions for yourself

• How do I feel about my quality of life under this plan? Do I feel better or worse? Why?
• What adjustments do I want to make?
• What else should I try?
• What other ways of healing do I want to explore as a complement to what I’m doing now? How can I integrate them into my treatment plan?
• How am I handling side effects of my treatment?
• Am I taking care of myself physically, emotionally, and spiritually?

Helpful links