Making skillful decisions about cancer treatment
Guidance on making difficult cancer treatment decisions using a simple and intuitive model
Making skillful decisions at a glance
This document and process can help you make informed, thoughtful cancer treatment decisions. You don’t need to go through this document or this process all in one step. We encourage you to approach it in chunks that you can manage.
Michael Lerner sums up the main content of this document in this letter.
The shock of a cancer diagnosis can feel overwhelming. And yet the decisions you must make about your cancer treatments can be some of the most consequential.
Here are some important rules of thumb for getting these powerful—yet also often difficult—cancer treatments right.
Don’t rush into treatment
First, don’t rush into treatment. You almost always have some time unless it is an acute emergency. Ask your doctor how much time you can safely take to consider your options. You may need time to emerge from the shock of a diagnosis and decide what you really want to do. You will likely do better and likely have fewer regrets. The biggest regret people with cancer often have is when they look back after treatment and say “I wish I’d known that before.”
Research your choices as carefully as you would a home or a car purchase
Second, you would likely take great care in deciding on a new car or a new home. Take at least as much care in researching your options in cancer treatment. The benefits can be so important. Find a friend or family member or hire someone to help you. Someone to take notes, look up treatments, study physician qualifications, and all the rest. Cancer.net from the American Society of Clinical Oncology is one of the best resources for understanding how your oncologist sees your situation. Likewise the National Cancer Institute’s www.cancer.gov.
Get several opinions
No physician would undertake a major cancer treatment without getting several opinions. Ideally you want to talk with physicians in different hospitals or care networks. They often have different advice. You may trust one practitioner more than another.
Take time to understand your options
That’s why taking time to understand your options before deciding on these life-altering therapies is so important. Many of these therapies will fundamentally change your life in lasting ways.
Research side effects
Research side effects. You may live with them for a long time. Knowing about them, including whether or not complementary therapies can be utilized to minimize them, may affect your decisions about which cancer treatments to choose.
Ask what matters now
Above all, ask yourself what really matters now in your life. Do you want to go for a cure (or life extension) at any cost? Or do you prefer quality of life, enjoying what time you have, picking therapies where the risk and benefit are acceptable to you, and possibly adding complementary therapies?
You won’t regret taking the time you need to explore these fundamental life choices. The answers will depend on what truly matters now for you.
Use 7 Healing Practices to strengthen yourself for treatment
Conventional treatments are often rigorous. The healthier you are, the better you are likely to come through them well. Using our 7 Healing Practices is fundamental and widely accepted wisdom to strengthen yourself before, during, and after treatment.
Be cautious about complementary therapies alone when conventional therapies are curative or can extend life at an acceptable cost to you
We’ve known many people who didn’t want conventional therapies because they feared their side effects. Often their cancers were early-stage and curable when they opted for complementary therapies alone. Then their cancers progressed and became incurable.
Often they then accept conventional therapies when these therapies can no longer offer cures.
This is a tragic situation. If conventional therapies offer a cure or a high likelihood of life extension, go for them—unless you have truly decided that the cost in terms of quality of life and what matters now to you is too high.
Build complementary therapies around the best conventional treatment
Build your complementary therapies around the best conventional treatment. Start with our 7 Healing Practices. Then explore what other complementary therapies show evidence of effectiveness with your cancer. Our database of reviews of complementary therapies will make your search much easier.
What you really want is a qualified integrative cancer specialist to work with you. The Society for Integrative Oncology is the most credible starting place to find someone from a mainstream perspective. The Oncology Association of Naturopathic Physicians is another excellent resource. There are many more. It is far better to build your complementary therapy program with qualified help than to go it alone.
My friend and Medical Advocate Mark Renneker says this: He has never seen a case where more information doesn’t improve outcomes. The bottom line is you can go as deep as you want, as you choose, and as you have time to do.
My prayers for your decisions. I’ve been in this place myself. The choices aren’t always easy. But the more time and thought I give them, the better I usually do.
Love and prayers,
When diagnosed with cancer, you need to respond wisely and effectively. In our experience, thinking through the following steps will guide you well: time, diagnosis, options, decide, act, and review. This model is borrowed from pilots who have to make effective decisions in serious situations, and we believe it can help you.
On this page
A decision-making model
A framework for making decisions can help you respond wisely—and quickly if needed—in serious and uncertain situations. While not all cancer decisions are urgent, they often feel that way.
This model is designed to be used as many times as you need to accomplish your goal:
Each of these steps includes questions to ask your doctor, questions to ask yourself, and suggestions. These questions and suggestions may inform and even lead you to change your choices and outcomes.
Start each step by slowing down. Take a breath and gather information—especially about your diagnosis and treatment options. Ask yourself often if your choices align with your treatment goals, values and wishes. Finding an oncologist who supports your choices is a critical step.
Preparing for your appointments
Starting with your first appointment, these suggestions may help you manage your cancer care well.
Write your questions
Having your questions written before the appointment will help you remember what you need to know to make good decisions.
Ask someone to accompany you
Listening carefully and thinking clearly can be difficult when you are shocked and stressed. If you can, bring someone with you to take notes and to make sure you ask all your questions.
Plan to record your conversations
At your appointment, ask for permission to make a recording so you can review it later for things you may have missed or misunderstood.1Kwon DH, Karthikeyan S et al. Mobile audio recording technology to promote informed decision making in advanced prostate cancer. MedPage Today. April 7, 2022. Viewed April 16, 2022.
Learning you have cancer can make you feel anxious and pressured to make a quick decision about treatment. Maybe you’re afraid the cancer will grow and spread. Maybe making decisions helps you feel a sense of control in this situation. Maybe you are feeling pressure from your doctor, friends or family to make a decision. Yet, in most cases, you can slow down, gather information, and explore your choices.
Approaches that may help
Recover from shock
Many people are shocked when they are diagnosed with cancer. This is not a good state for making choices that may have lasting consequences. Unless you have an emergency, you have time to recover from shock.
Take time to choose
Don’t be rushed into treatment. In most cases, you have time to choose. We have known many people who have been diagnosed with cancer who have rushed into decisions they later regretted. Take the time you need to make an informed choice that meets your needs and matches your values.
Start building your health
You may feel frustrated and helpless by how long it takes to get a diagnosis. Or perhaps your diagnosis may have been sudden, leaving you feeling shocked or out of control. Either way, you can regain some control by using your time in these ways:
- Gather your support team.
- Start rebuilding your health by engaging in self carelifestyle actions and behaviors that may impact cancer outcomes; examples include eating health-promoting foods, limiting alcohol, increasing physical activity, and managing stress.
Questions for your doctor
Keeping a notebook with you can be helpful so you can write down questions as they arise and not forget them.
Examples of questions to ask:
- How much time do I have to make this decision?
- Is there a timeline for my treatment?
- What is likely to happen if I wait before starting treatment?
Questions for yourself
- Do I feel urgency? Does it come from inside me, from my medical team, or from my friends and family?
- Do I feel that I can take more time to consider my options?
- How much information do I need to feel sure of my decision? Do I feel that I have time to get that information?
- While I am getting the information I need, what can I do now to improve my health?
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 evidence that was used, which may include these:
- Imaging: X-rays, MRIs, CT scans, PET scans
- Blood tests
- Pathology reports
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?
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.
If your treatment involves chemotherapy, you may benefit from techniques that test how your cancer responds to various chemotherapy drugs in a laboratory before you’re treated. Chemosensitivity testing is seldom used by oncologists for initial treatment and requires shipping live tissue samples to specialty labs. Before going to the trouble and the expense of chemosensitivity testing, talk with your oncologist about their potential use of test 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 with regard to your quality of life with the chance of living longer.
Whatever the approach, it is your experience and your life. Think about your:
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?
You should be able to 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. If you don’t feel comfortable with your oncologist, keep looking until you find one that you trust. In our experience, wisdom and prudence are signs of a good doctor.
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.
Self-carelifestyle actions and behaviors that may impact cancer outcomes; examples include eating health-promoting foods, limiting alcohol, increasing physical activity, and managing stress practices have solid evidence for improving quality of life and may improve your disease outcomes, and they add little or no expense to your care.
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 therapies may also be added to your cancer care, many of which are available at low cost. However, some complementary treatments can be expensive and may not be covered by insurance.
To help you assess whether or not complementary therapies are good additions to your care, we rate the affordability and effectiveness of therapies for you, as well as their safety.
If you choose to use complementary therapies, we highly recommend that you work with a medical professional who is trained in integrative cancer care, and that your care is coordinated with your oncology team.
These consultations will add some expense, but taking this step will help you choose complementary therapies that don’t interact with your treatment and any other preexisting medical conditions you may have in a way to cause 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.
Recommended sources for information on conventional care
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.
Understanding the systems and how to work through it is critical to freeing you and your team to make the best choices and to getting you the best care. Whether your case is simple or complicated, someone—such as a cancer navigator or advocate—who knows the system and whom you can trust to advocate for you can be very helpful. Expert advocates also specialize in helping people research and find the best treatments.
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 or reduce 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 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?
A lack of a cure does not mean that you are out of options. Your cancer can often be managed, and you can choose to include complementary and self-care practices. These may focus on optimizing your body terrainthe internal conditions of your body, including nutritional status, fitness, blood sugar balance, hormone balance, inflammation and more to create an environment that is less supportive of cancer.
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.
This handbook helps you explore your options when conventional treatments are not among your them, for whatever reason.
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?
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.
Research about cancer is far from complete. Studies can have limits that prevent anyone from confidently linking a specific result to a specific treatment. Furthermore, research may have not included enough people with your characteristics to draw conclusions about how well a technique might work for you.9Blue Ribbon Panel. Cancer Moonshot Blue Ribbon Panel Report 2016. National Cancer Advisory Board. October 17, 2016. Pg. 11. Viewed November 14, 2021.
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?
Medical decision aids 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:
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, 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.
But do not forget that you are more than your treatment. You can also explore your physical, emotional, mental, and spiritual needs. Who will comfort you? Who will help you laugh and be happy? When people ask how they can help, consider asking for their support with small tasks centered on caring for you. They can be as small as cooking a healthy meal if that nourishes your body, or going for a walk with you if that nurtures your spirit.
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 staying 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.
Healthy practices and habits can build your general resilience and, in some cases, lower the risk that your cancer will come back.
You probably generally know about strategies such as eating better and exercising more, but we have researched how these work best to improve your health with cancer.
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 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?
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?
Keep reading about how to integrate your choices
Explore your choices
Choices in treatment
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