I'm sorry you're here because it likely means that you or someone you love dearly has been diagnosed with cancer. I'm truly sorry.
It’s hard to find the words to describe those early emotions. Fear. Anxiety. Optimism. Disbelief. Determination. Betrayal. Overwhelm. Powerlessness. Denial. Hope. Guilt. Empowerment. Sometimes you might have all of them floating through your mind at the same time. And at other times, you may be motionless and numb. Whatever it is that you may be experiencing, just know that you’re not alone and we can navigate it together. I'm here to lower hurdles and make this indescribable chapter of your life a bit easier to move through, with hope and confidence.
This page serves as a guide specifically designed for you—a newly diagnosed cancer patient. We will discuss the general path forward from understanding your diagnosis and the results of various diagnostic tests to analyzing your treatment options, preparing for changes in your life, and staying organized and maintaining control (as much as possible) through it all. We will also dive into communicating with your doctors, seeking second opinions, and how and where to find resources that may be of value to you at different times between now and survivorship.
Getting Organized
You’ll receive lots of information that you’ll need to organize and refer back to later. A 3-ring binder with section dividers will work well, but you can also choose an accordion file or another filing system. You’ll want to have room to record and add insurance information, medical bills and claims, medical records , contact information for everyone on your care team, and any advance directives. There are more details on each of these sections below.
Medical Expenses & Health Insurance
Medical Records
Contact Information for Your Care Team
Navigating the Site
Here are shortcuts to a few pages you may want to explore:
In the next section, we'll discuss Understanding Your Diagnosis.
This information is used to partially determine your treatment plan. Your oncologist will likely refer to standard-of-care guidelines from the NCCN to plan your first, second, or third-line treatment options, initially based on your type of cancer (e.g. adenocarcinoma), tissue of origin (e.g. colon or colorectal), and specific location (e.g. at the recto-sigmoid junction). Tumor size doesn’t consistently correlate with seriousness or aggressiveness, but it’s a worthwhile data point to record for future reference.
These diagnostic factors are determined by your oncologist, surgeon, and/or, in large part, by pathologists--the physicians who examine your tumor tissue on a microscopic level. Various tissue characteristics can help identify if and how much a tumor has spread (local, regional, distant), if any nearby lymph nodes have cancer, how unusual the cancer cells look under a microscope, etc. There are infographics on the Cancer Stage & Pathology page that dive into more details on staging and grading. You can also visit the My Cancer Type page to find resources on staging for your specific cancer type.
Cancer cells from a biopsy, surgery, and/or your blood will likely be analyzed for mutations and biomarkers that could play a role in your diagnosis and the treatment options available to you. There may be specific mutations and biomarkers your doctor wants to screen for depending on your cancer type and family history. A mutation is a change in a gene that can alter how cells function, and biomarkers, for these purposes, are genes or proteins that may provide information about the presence, extent, or characteristics of your cancer.
There are two main types of mutations you may encounter.
Biomarkers, sometimes called tumor markers, not only include gene mutations in your tumor as mentioned above, but also include proteins and other substances found throughout the body that may point back to cancer. These markers are tested for in the blood, urine, tissue, or saliva, and the presence and/or abundance of these markers can indicate active cancer in the body. Some examples of biomarkers include CEA, CA-125, CD19, MSI/dMMR, HER2 amplification, and PSA.
ctDNA, or circulating tumor DNA in your blood, is another biomarker test you may receive during your care. These tests can tell us if cancer DNA is detectable in your body, and multiple ctDNA measurements over time may reveal how well your cancer is (or is not) responding to therapy. MRD, or minimal residual disease, is a measure of how much ctDNA is present in your blood following treatment and can be used for the early detection of recurrence.
Please visit our Labs, Biomarkers & ctDNA page to learn more about tumor markers, ctDNA, and minimal residual disease.
It’s shocking to hear the phrase, “you have cancer.” When you first hear these words, there will likely be a laundry list of questions you have about your cancer that cannot be answered immediately. Your initial diagnosis could come from any doctor who screens you for cancer, from a surgeon, a hospital physician, an advanced practice provider like a PA or Nurse Practitioner, or from an oncologist. You may not receive a complete diagnosis until the reports are back from all tests and procedures (genetic testing, tumor profiling, pathology (tissue analysis), surgical pathology (lymph node involvement and spread of cancer), imaging (CT scan, MRI, PET scan), and any other labs ordered. It may be a few weeks before you know all of this information, and the wait is undoubtedly stressful. Take a look back at the Roadmap to see if there are other things you can be tackling in the meantime. And because this is such a common feeling, let’s make one thing very clear: your cancer diagnosis is NOT your fault.
Cancer happened to you, not because of you.
In some cases, surgery takes places very early in the process. It may be the first treatment step taken after diagnosis or it may occur as the result of an emergency visit during which cancer is discovered. If surgery is not immediately necessary, possible, or advisable, you may undergo a procedure known as a biopsy to remove a small amount of tissue for further analysis of your cancer. This is usually done in an outpatient setting (meaning you go home the same day) , but it may carry some of the same risks as major surgery. Talk to your doctor to determine if you need a biopsy, what type of biopsy will be done, and what the risks are. You can learn more about biopsies by visiting the Cancer Stage & Pathology and Surgery pages.
Finding the right doctor isn’t always easy. You may not meet with an oncologist until after surgery or you may be referred to speak with one before any intervention takes place. Start your search by calling your insurance company to get a list of oncologists/cancer centers within a reasonable distance of your home. You may be able to choose between community cancer centers, academic medical institutions, and NCI cancer centers, depending on your location. You can also ask for recommendations from you primary care doctor, another medical professional you trust, or people you know locally who have been under the care of an oncologist. You can also do research on your own by reading reviews online and verifying licenses, education, and board certifications. Visit the Care Team Options page and scroll down to resources for credible sites to use in researching providers. Once you’ve narrowed your list down to 3-4 doctors, call each office to see if they’re accepting new patients and how quickly you can get in for a first appointment. If your insurance will cover it, book a minimum of 2 consults with different oncologists so you can get a feel for who is best for you.
Tips for medical appointments:
As soon as there are tissue samples of your tumor available (from surgery or biopsy), they will be sent off to pathology for analysis. You can expect to learn your cancer stage, tumor grade, and information about invasion and metastasis from your pathology reports. Visit our Cancer Staging & Pathology page to learn more.
If you haven’t had a genetic test to identify hereditary mutations, ask your doctor for more information. Most insurance plans will cover this testing based on your type of cancer, stage, and/or family history. If you’re not covered, visit the Cost of Care page for a list of organizations offering financial aid for genetic testing. It’s important to consider this type of testing because some mutations may make you eligible or ineligible for treatments beyond the traditional chemo, surgery, and radiation offerings. Visit our Genetics & Mutations page to learn more.
Prior to surgery, biopsy, or starting any anti-cancer therapies, you will likely have some imaging done to take a closer look inside your body. This may be done using a CT scan, an MRI, an ultrasound, X-rays, or a PET scan. CTs and MRIs are the most common imaging modalities you’ll encounter during treatment and surveillance. PET scans may be reserved for special situations and not all cancer patients will need or benefit from a PET scan. To learn more about cancer imaging, please visit the Radiology (Imaging/Scans) page.
Your blood will likely be drawn regularly and often during your treatment to monitor how your body is handling and/or responding to treatment. It’s common to have bloodwork weekly or biweekly during active treatment, and every few weeks or months once treatment has concluded. These routine tests may include a CBC (complete blood count), blood/general chemistry panel, and various biomarker tests, though these last tests may not be run as often as the others. Please visit the Labs, Biomarkers & ctDNA page for more information.
The treatment options you’ll be presented with may include chemotherapy, surgery, radiation therapy, hormone therapy, immunotherapy, targeted therapy, clinical trials, or a combination of these. Depending on the stage of your cancer, you may be offered a “watchful waiting” approach in which no interventions are recommended at that time. While recommended treatment options are outlined in the NCCN Guidelines for your cancer type, the choice is still yours to choose not to pursue certain therapies.
A prognosis is an educated physician estimate of your expected survivability based on statistics and clinical experience. It’s a guess as to what may happen for you in the future. It’s not a fact. It’s not completely personalized to you and your cancer. It is not a death sentence or an expiration date, and it’s not carved in stone. There is a healthy dose of uncertainty baked into every prognosis, and you should use that information as just that- an uncertain estimate. Think of a prognosis as the opinion of a single person made at a specific point in time using only the information known at the time. If new information is learned (how you responded to treatment, if cancer has spread, new mutations, etc.) then an updated prognosis that includes this new information would be needed. The earlier a prognosis is issued, the more likely it’s based heavily on statistics as opposed to any personal characteristics. However, as you move through diagnostics, treatments, surveillance, etc. the prognosis can be better tailored to you specifically.
When can I ask about prognosis?
What individual information is factored into a prognosis?
What does a doctor use to determine prognosis?
Prognosis: To Know or Not To Know
“Often, patients with common advanced cancers have inaccurate illness understanding and would benefit from effective prognostic communication. Many patients mistakenly believe that their cancers are curable when they are not. A recent study of patients with advanced lung and colorectal cancer found that 69% and 81%, respectively, believed that the chemotherapy they received was intended to cure them. These data suggest a need for oncologists to share prognostic information that is relevant to the understanding of the intent of treatment. Nevertheless, many oncologists are reluctant to do so, because they worry that, by sharing prognostic information, they will make patients needlessly hopeless or upset and/or that patients will view them less favorably as a result.” (1)
Knowing: Some Pros & Cons
Not Knowing: Some Pros & Cons
How to ask for a prognosis if your doctor is hesitant to give you one:
A prognosis can be a crucial factor in making treatment decisions as it may provide guidance and/or affect the speed of your cancer treatment. However, it is an emotionally challenging conversation for both patients and physicians, and while it can be a good idea to know this information, it’s your right to choose not to know.
You can access more information on prognoses and cancer outcome prediction calculators in the Resources section at the bottom of the page.
Check out our Cancer Navigation Roadmap below for an overview of what may lie ahead and what you can be tackling at different points along the cancer care continuum. You can also download a PDF version of the Cancer Navigation Roadmap with a companion checklist in the Education Shop.
Relationship dynamics can change following a cancer diagnosis. Fear, guilt, uncertainty, and stress can erode relationships, yet all those emotions can also pull people more closely together. Gathering a dedicated support system will be a critical part of your journey. Early on, you may experience what’s called a “cancer rally” in which friends, family, and acquaintances rally around you with support, favors, gifts, and loving words. This can be both lovely and overwhelming. Lean on your caregiver to run interference or set up a schedule of visitors so you have ample time to rest and focus on your health.
There is often a slow transition from the cancer rally to “cancer ghosting” as you move forward with treatment. People you rely upon or hold dear may become distant, check in less often, or disappear altogether. This change is ultimately about them and not you, but it’s natural to feel personally slighted or abandoned if this occurs.
Here are a few possible explanations as to why some people may become distant:
On a more positive note, people you least expect or who you may not be as close with may step up in extraordinary ways to support you, which is a beautiful surprise in an otherwise not-so-pretty stretch of time.
This is a personal decision, and you should be the one who determines who knows, when they know, and how and what is shared with them about your personal health.
Tell close friends and family only?
Announce it on Facebook?
Hold it close until later?
Share openly when the subject arises?
You can do it, or not do it, however you want. If you share, you’ll likely have more supporters and you may motivate others to get screened for cancer or to schedule that doctors appointment they keep putting off. If you keep it quieter, you’ll have fewer Nosey Nellies, less unsolicited advice, and less of an obligation to keep everyone updated on your journey.
One aspect of sharing your diagnosis that can be especially challenging is the pressure of having to be aware of and manage other people's reactions to YOUR cancer, often when you're still wrestling with your own reaction and emotions. As loving, nurturing, and empathetic as you may be, it is not your responsibility to carry that weight. Adults need to be responsible for their own feelings and should direct their needs for comfort, reassurance, hope, and understanding to someone else, anyone other than the patient.
“He rejected outright the added burden of trying to put others at ease. 'Az, I cannot begin to describe to you the psychic energy I have to invest just to carry on with business as usual given the dizzying turn of events I am facing on a daily basis. I don’t have energy left over to be concerned with how others are handling my illness. Even my own children. I want to, but cancer is draining in more ways than I imagined. You can talk to them if you want to, but I honestly can’t.'” -Azra Raza, MD in The First Cell with a quote from her late husband, Harvey Preisler, also an oncologist
There is a resource collection at the bottom of the page with advice for sharing your cancer diagnosis with others and avenues to share your cancer story more widely.
Everything that needs to be done on a regular basis to run your home will still need to be accomplished throughout treatment, and this can be overwhelming to manage. Dishes, laundry, childcare, pet care, running errands, meal prep, lawn care, deep cleaning, paying bills, going to work/earning income, etc. Sit down with your partner, spouse, or caregiver to discuss which of these responsibilities you’d like to keep, and which ones you need to delegate to them or other family and friends who are able (and willing) to assist to keep your life running smoothly. These changes are likely temporary, and once you have a few treatments under your belt you’ll be better able to determine how you will feel and what you can reasonably tackle on your own.
Ask for and accept help. Do not feel guilty. Your family and friends want to help you. Focus on your healing.
Everyone has their own opinion on what’s best for you. Some of these opinions may be bolstered by the person's education, experience, or the trust you have in them. Other opinions may be based on misconceptions, personal fears or preferences, or lack of understanding. And there are usually a few opinions based on some cancer “guru’s” anecdotal guidance or a “miracle” plan, product, or supplement. “If it worked for my neighbor’s cousin’s father-in-law, it will work for you!” Not the case.
Choose the person or people who you welcome to participate in treatment decision-making and thank everyone else for their input. If tension continues, you can talk it out with that person to understand their point of view, you can disengage, you can choose not to discuss cancer treatment with that person, or you can ask them kindly to support the decision you made and to stop trying to change your mind. Suggestion Box has been closed.
You do not have to defend your choices. It’s your body and your life. You choose what’s best. That being said, if you’re experiencing abuse, neglect, isolation, or your autonomy is being stripped away at the hands of a loved one, please seek help. Our Resources page has a list of organizations that are ready and willing to help you discreetly, affordably, and quickly.
Kids are intuitive and able to sniff out a suddenly somber and stressful home. Be honest and straight-forward, but age-appropriate. Wait to tell them, tell them quickly, or don't share it until they're older. Give them some details or only give them the basics. Answer their questions, reassure them, cry with them, and show them pictures or visuals to help them understand. Help them feel included in the family’s efforts to support mom or dad, and explain the treatments and how mom or dad might feel ill or tired because of them. Let them know that you will keep them up to date and to ask you any and all questions they have. Check in with them often to see how they are coping and if there is any confusion. Explore family therapy or engage your child’s school guidance counselor so they have a safe place to talk about things away from home. Whatever it is you choose to do and however private or open you want to be with your children is up to you. You know your children better than anyone so trust your judgment and do what you feel is best for your family.
Our Experience from the Kids' Perspectives
When I asked my 10-year old about what he remembered from our "Dad has cancer" talk a few years ago and what helped him/may help other kids, he shared the following with me:
He was 8-years old when we had our conversation and his little sister was only 4. He seemed to realize the immensity and intensity of what was going on right off the bat. He was tearful and had a lot of questions in that first sitting, including "but will Daddy still be able to work?" because he knows his dad loves his profession. His innate empathy was on full display that day and we were (still are) so proud of how he handled everything. He wanted to understand the science and what was going on in Dad's body, and he memorized his specific stage, cancer type, and what treatment he was having so he could talk about it knowledgably at school. He was proud to be able to talk about it in that way, and he continued to ask questions and check in with Dad on a regular basis and still does today. In fact, Dad just reached 18 months NED (no evidence of disease) and each kid was stoked to run up and congratulate him. It was a pretty special moment.
The little one's response at the time was a bit different than her brother's, as is to be expected. She said something along the lines of "well, I'm not going to cry," and she stuffed it all down deep. She didn't have any immediate questions, and she sat on the couch looking at her dad, brother, and mother crying almost as if we were all overreacting and being dramatic. About an hour later, she was playing in her room and I popped in to check on how she was feeling. Her only concern in that moment was "am I going to get cancer in my tummy, too?" Ugh, heartbreaking. Unfortunately, Dad's cancer was due to an inherited gene mutation called CHEK2 which does increase her and her brother's chances of developing breast or colorectal cancer, but we didn't share that piece of information right away. (We have since shared it and let them know that when they are each 18, we will go to the doctor for a test to see if they have the same "cancer blueprint" and if they do, all they have to do is get special tests, called screening tests, at an earlier age.) Over the next few days, we noticed she was irritable, quiet, and removed from the normal chaos of our home. It was clearly bothering her, but she didn't have the words or the tools to express it. We continued to bring up the topic as a way to open the door for questions and normalize talking about cancer and, with time, she opened up, asked questions, and starting sharing her emotions. She's 6 now and recently came up to me and said, Mommy! You never told me that kids could get cancer, too! I thought it only happened to grown-ups." So I guess I didn't fully educate her in the way she wanted. Can't win 'em all.
We also informed the kids' teachers by email after this conversation so they were aware of what was going on, what the kids knew, and to ask if they could keep an eye out in case either of them seemed to be having a hard time at school.
It felt like an impossible conversation to have, but I can say the anticipation was worse than the actual talk. I think we put a lot of unnecessary pressure on ourselves to do everything "right," especially considering we had only known the diagnosis for a short period of time before we told them. I didn't need the script I was frantically searching for; I just needed to sit down and simply talk to my kids how I normally would. Please be more gentle with yourself than we were. Look at it more as "introducing a new topic of conversation" as opposed to "I have to cover everything right now." There are too many emotions involved to get this perfect in one sitting, if at all, especially on the heels of a fresh diagnosis. If you don't feel ready to have the conversation, you can certainly wait until you feel better prepared, though you'll likely never feel "totally ready" because it's a sh*t conversation that NO ONE wants to have. Ease into it.
~Hugs~
There are more resources on this topic at the bottom of the page to help you find the approach that is best for you and your family, including a long list of children's books that tackle cancer.
Ruth Westheimer
Being a cancer patient or caregiver is immensely challenging, and being one who is proactive, inquisitive, and engaged can certainly elevate the level of commitment, energy, and emotional dedication required of you. However, the benefits of advocating for yourself and staying involved are plentiful and meaningful, and can positively impact your physical, emotional, and psychosocial well-being.
"Patients who participate in their decisions report higher levels of satisfaction with their care; have increased knowledge about conditions, tests, and treatment; have more realistic expectations about benefits and harms; are more likely to adhere to screening, diagnostic, or treatment plans; have reduced decisional conflict and anxiety; are less likely to receive tests or procedures which may be unnecessary; and, in some cases, even have improved health outcomes." (1)
You can empower yourself by asking questions and seeking knowledge and understanding.
A large part of making informed medical decisions, is asking questions and using those answers to develop a stronger understanding of your cancer. The information gathered provides a foundation for weighing treatment options and making medical decisions. Knowing the “why” and “how” and “when” and “why not” and “what does that mean for me” allows us to make decisions that incorporate facts, our feelings, and our personal values and preferences.
Scouring the internet endlessly for answers to questions is not an uncommon experience for someone bearing the weight of a new cancer diagnosis. Trying to learn what you don’t even know you need to learn is exhausting, frustrating, and messy. Turning to doctors for answers to medical questions is common and encouraged. However, it can be difficult to figure out what to ask, and sometimes it can be uncomfortable or embarrassing to rattle off a list of things you don’t know. It may surprise you but doctors have lots of questions for their own doctors when they or a loved one is diagnosed with cancer. It’s perfectly normal and not-at-all a sign of how much or little you know. As a bonus, patients who have lots of questions and want to be involved in their own care probably keep doctors on their toes! Squeaky wheel, right?
Don’t be afraid or hesitant to ask your doctors questions. This is a professional relationship, not a personal one, and asking questions is just a simple request for information, not a challenge. Furthermore, this professional relationship is in place to help YOU, YOUR HEALTH, YOUR LIFE. You have hired the doctor to provide a service to you, not the other way around.
As patients and caregivers, we’re conditioned to be exceptionally respectful of a doctor’s time and expertise, careful not to waste a second, and to be patient and understanding when they run late, don’t call as scheduled, or rush through an appointment. However, your time and your needs should also be respected and prioritized. The entire reason you are in that clinic is to preserve, protect, enrich, and extend the time you have in this life. Having your questions answered is a fundamental feature of your cancer care, not a favor or a fringe benefit.
You deserve to know what may lie ahead, what is going on inside of your body, how your treatments will work in your body to fight the cancer, and how your body and life will be impacted by your treatment choices.
Your doctor(s) should be there to fill in your knowledge gaps, answer questions, provide realistic recommendations and warnings, and guide your care by leaning on their education, expertise, and hands-on experience caring for similar patients. Receiving cold, vague, rushed, or incomplete answers does not discredit the importance or validity of your question. The unknown plays a major role in a cancer patients’ fear, anxiety, and emotional distress. Anything that discourages patients from seeking answers allows patients’ fears and distress to persist. We cannot ignore what patients need—and patients need more information.
Be persistent in getting your questions answered; it’s crucial that you feel confident in your level of understanding and the treatment choices you make.
We can influence all aspects of our care, which means we can play an important role in personalizing the medicine we receive. Oncologists may be the experts on cancer, but you are the expert on you.
There is a collection of questions available for free download called "General Cancer Short List" on the Education Shop page. You can also download the Diagnosis Details worksheet, "I" Guide for Patient Medical Decision-Making, and T.A.L.K. Communicating Needs to Your Oncologist.
If you're looking for an encyclopedia of questions to ask, visit The Education Shop for the Q.U.I.C.K. guide, a compendium including 500+ cancer-related questions to ask healthcare providers covering more than 20 topics.
Communicating with Your Oncologist
It’s important to communicate details about yourself that could impact your care to your oncologist. The more your doctor knows and understands you, the better they can care for you as an individual and personalize your cancer care. It's hard to act in someone's best interest if you don't know what matters to them. Help your doctor get to know you so the two of you can work together to develop an individualized plan to treat your cancer.
Generally, the most important information to patients when preparing to start treatment is understanding what the treatment will be like, how the side effects will affect them, how they will feel, what they will be able to do and not do, and what their quality of life will be after treatment. On the other hand, the focus of the physician is usually how well the proposed treatment will work at reducing or eliminating the patient’s cancer. By communicating with your doctor openly, clearly, and often, you can merge these separate lists of priorities into a single set that you both focus on and regularly address.
“Medicine is the most social of the sciences, demanding heightened communication skills. Patients are anxious, distracted, knowing they have a fixed allotted time with their doctors. Disease, pain, and fear are disorienting. Often, patients cannot verbalize their deep anxieties without a prompt. Facing a “doorknob” doctor, whose one hand is always on the handle, they have no time to communicate their worries and expectations, their preferences. They are sensitive to the body language of their physicians, but their own bodies speak through a far more eloquent language.”
-Azra Raza, MD in The First Cell
Personal Information to Share:
Medical Information to Share:
Resources or Information on Topics You May Request:
Doctors may not ask about or bring up some of these topics, but in order for your care to be as optimized for you as possible, all parts of who you are as a person need to be considered by your care team.
"I think [trust in your doctor] is the fundamental bedrock for the patient and the patient-physician relationship. We spend so much time thinking about our diseases, whether we are on the receiving end as a patient or the treating end as a physician and, really, if we don’t trust the other person, the information they’re giving us, then we’ll always be suspect and we’ll always be second guessing…You really need a guide. Someone to help you walk through this journey and this path and think about you as an individual person because you’re not just a diagnosis, you’re not just a cancer. You’re a person. You have family, you have a life, you have a story, both before your diagnosis and after your diagnosis. And so you need a physician to really be there with you, to walk with you, to walk alongside you, not in front of you and not dictating how you go but really WITH you because I think that will help the whole entire therapeutic process. We know that there’s a huge component to emotional well-being in terms of the psychological aspects to it and that we, as physicians, need to be thinking about how do we treat our patients holistically and not just see them as recipients of a given treatment or drug.” -Dr. Robert Den, Harvard and Yale-trained physician and radiation oncologist
EXPECTATIONS
There are a number of things that you should expect to be honored in your engagement and communication with healthcare providers and their teams.
At a minimum, you should expect:
“Patients disoriented and confused by the caprice of their rapidly evolving cancer and the absurdities of medical choices need more than medical advice from their oncologists. For their part, physicians must now harness all their own emotional, psychic, social, intellectual, philosophical, and even literary resources to engage with the patient and their families in repetitive, substantive conversations informed by empathy, kindness, and understanding. A more balanced, candid conversation regarding the limits of medical and scientific knowledge should supplement the discussions of treatment options from the first meeting and continue as often as possible through subsequent encounters.” -Azra Raza, MD in The First Cell
BEING PROACTIVE: Looking Out for Your Future Self
Once you’ve established your initial treatment plan, you can take a deep breath and step forward knowing you were a major participant in planning for your future. There will be additional decisions to make and, if you are able to do the research, weigh the pros and cons, and come up with a “next steps” plan BEFORE it’s needed, you’ll be protecting yourself from having to make complex, consequential decisions at a time when you may be dealing with heavy news.
___________________________________________________________________
(1) Krist, Alex H et al. “Engaging Patients in Decision-Making and Behavior Change to Promote Prevention.” Studies in health technology and informatics vol. 240 (2017): 284-302.
You deserve to know if there is something else out there that may help you. You deserve to know if your doctor is on the right track for you. You deserve consensus. You deserve access to the full library of cancer knowledge and how it may impact your care, your treatment options, and your survival. You deserve that peace of mind. It’s not about distrust, inviting conflict, or pitting one medical professional against another. It’s about inviting a bit more information into your mind so you can move forward without regret or wondering “what if?”
We may not be shopping around to find the most affordable oncology care, but we should be shopping around for a doctor who is the right fit and to find agreement on your diagnosis and treatment options. Gather consensus for peace of mind. Scientists do it. Doctors do it. You can do it, too. You can gather consensus as you move through your cancer journey by seeking multiple opinions, asking questions, pursuing additional & more detailed information, and keeping an open mind.
Once you've decided to seek a second opinion, as a first step, call your health insurance company to make sure second-opinion consultations are covered and what it will cost you out-of-pocket. If you don't have a recent list of in-network oncologists, ask your insurance company to email one to you.
If you don't have any local or nearby oncologists you're comfortable seeing for a second opinion, take a look at the major cancer centers throughout the U.S.. Most offer virtual second opinions so you can take advantage of the expertise without having to travel.
To secure an appointment for your second opinion, you can call, email, or fill out an online form through the cancer center or provider's website. If you choose to request a consultation by email or form, you can prepare a brief overview of your situation to get the doctor up to speed on what's going on and what you need. You can use the following imaginary patient overview as a template, just be sure to include your own information. Also, do not include your social security number or any payment details when emailing or messaging a medical practice for an appointment.
SAMPLE TEMPLATE
___________________________________________________________________
Case Summary:
I’m a/an (age) year-old (gender) in (good, fair, poor) health with (NO or list other conditions) comorbidities, living in (city, state). I was diagnosed with Stage (#) (cancer type) with (NO or # of) metastases in (organs/areas of the body) in (month, year). I’m interested in getting a second opinion on the treatment plan I should pursue moving forward. Please let me know if you are willing to review my case and discuss any feasible treatment options. I’m happy to send/release medical records if we move forward.
Here is an overview of my cancer journey thus far:
Thank you for your time and consideration.
_______________________________________________________________
You certainly don't have to send this detailed of an overview; it's not necessary, but it can be helpful to provide something similar when scheduling a 2nd opinion appointment.
You'll likely hear back from them to schedule an appointment within 2 or 3 business days, maybe a bit longer, but don't let it stretch out beyond 7-10 days before you follow up with them. Hopefully, you're able to secure an appointment within the next few weeks. If they don't have anything available as soon as you'd like, ask to be put on a "standby, last-minute cancellations" list.
In advance of your appointment, they will request your medical records. Here are a few things to keep in mind when your protected health information is being accessed:
Prepare for your second-opinion consultation the same way you would when meeting an oncologist/surgeon/radiologist for the first time.
Here are two articles you may find helpful:
If you'd like to download PDF versions of our guides and worksheets,
please visit the Education Shop to view everything we have to offer.
Right now, most of these downloads are completely free!
We regularly review these resources to make sure that all links work correctly and are of value to our visitors. If you find a link that isn't working, please email coral@oncologyoffense.com. If you would like us to consider adding a resource to our list, please email us with details.
Navigating the Site
NCCN Clinical Practice Guidelines- What are they?
https://www.nccn.org/guidelines/guidelines-process/about-nccn-clinical-practice-guidelines
Find the NCCN Guidelines for Your Cancer
https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients
Just Diagnosed (F*ck Cancer)
https://www.letsfcancer.com/patients/just-diagnosed/
CanHEAL Toolkit for Cancer Care (New Diagnosis) AWCIM
https://cancertoolkit.integrativemedicine.arizona.edu/cancertoolkit/home.html
American Cancer Society: Understanding Cancer
https://www.cancer.org/cancer/understanding-cancer.html
National Institutes of Health: Understanding Cancer
https://www.cancer.gov/about-cancer/understanding
How is Cancer Diagnosed (NCI)
https://www.cancer.gov/about-cancer/diagnosis-staging/diagnosis
Mayo Clinic: 11 Tips for Coping with a Cancer Diagnosis
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-diagnosis/art-20044544
CANCER101 101 Cancer Terms Defined
https://cancer101.org/where-do-i-start/dictionary/101-terms/
National Cancer Institute: Coping with Your Feelings during Advanced Cancer
Coping with Your Feelings - NCI (cancer.gov)
Patients Rising: Our mission is to provide education, resources, and advocacy for people living with chronic and life-threatening illnesses.
Patient Advocate Education | Access to Healthcare | Patients Rising
ASCO Answers: Myths & Facts About Cancer (2023)
https://www.cancer.net/sites/cancer.net/files/asco_answers_myths_facts_about_cancer.pdf
Common Cancer Myths and Misconceptions (NCI)
https://www.cancer.gov/about-cancer/causes-prevention/risk/myths
Patient Bill of Rights (American Cancer Society)
Patient Bill of Rights | Managing Your Health Insurance | American Cancer Society
What to Know About Getting a Second Opinion After a Cancer Diagnosis (MSKCC)
https://www.mskcc.org/news/what-to-know-about-getting-second-opinion-after-cancer-diagnosis
People want to help you. Here are ways to let them. (Bright Spot PDF Guide) Letting people help you is a gift you can give to them. Your friends and family are concerned about you. They feel powerless. They don’t want to intrude and often don’t know what they can do to be helpful. But it’s important to realize that they WANT to help you. Think, if the tables were turned, how far you’d go to help a friend. It’s also a gift you can give yourself. Cancer treatment takes a toll: physically, mentally, emotionally. No one wants to be a burden on friends or family, but more than likely, you’ll benefit from their help. It may be easier to ask for help with specific tasks by having a list to share or a “care manager”: someone you trust implicitly that can organize your personal support team. A number of different websites exist that can help you share information and coordinate helpers. Some of these are: Meal Train, CaringBridge, Lotsa Helping Hands, CarePages, GoFundMe and PostHope.
People want to help you. Here are ways to let them. — Bright Spot Network
Livestrong Guidebook is a companion for cancer survivors as they navigate the physical, emotional and practical concerns they may have during their cancer journey.
https://www.livestrong.org/what-we-do/program/livestrong-guidebook
How to Advocate for Yourself at Doctor's Visits, According to Doctors (TIME, May 2024) Doctors rarely advise patients to fall down a rabbit hole online. But that doesn’t mean you shouldn’t do research. The best patient is the informed patient, according to Dr. Benita Petri-Pickstone, a family physician in Gahanna, Ohio and clinical assistant professor of family and community medicine at the Ohio State University Wexner Medical Center in Columbus. She says a vital aspect of self-advocacy is for patients to take an active role in their health, which means doing their research ahead of time so they can ask informed questions. Be proactive, raise any concerns with your doctor, and don’t hesitate to ask a multitude of questions, she says. “The patient who tends to get the better care is usually one that is more vocal and asks informed questions about things based on what they’ve read and based on symptoms that they are feeling,” Petri-Pickstone says.
https://time.com/6974247/how-to-advocate-for-yourself-doctors/
How to Share Your Story--And Help Save Lives (Cancer.net and Tamika Felder)
https://www.cancer.net/blog/2018-01/how-share-your-story%E2%80%94and-help-save-lives
Telling Others About Your Cancer (ACS) Finding out you have cancer can be overwhelming for you as well as friends and family. People often don’t know what to say. They may feel sad and uncomfortable and might be afraid of upsetting you. They might be frightened about the possibility of losing you. Sometimes people find it easier to say nothing because they’re afraid of saying the wrong thing. Some people find it easy to talk, while others may become overly careful or act too cheerful.
https://www.cancer.org/cancer/diagnosis-staging/telling-others-about-your-cancer.html
How to Share Your Story (AACR) Cancer survivor Jamie Holloway gives advice for other survivors who want to tell their cancer stories.
Tips for Sharing and Writing About Your Cancer Journey (Moffitt Cancer Center)
How Sharing Your Cancer Story Can Have a Positive Impact (Conquer magazine)
Why it Helps to Share Your Cancer Story and How to Get Started (Conquer magazine)
Choosing to Share Your Cancer Story is Your Choice (Cure magazine)
https://www.curetoday.com/view/choosing-to-share-your-cancer-story-is-your-choice
How to Share (Or Not Share) A Cancer Diagnosis (Henry Ford Health)
https://www.henryford.com/blog/2023/09/share-not-share-cancer-diagnosis
How to Tell People You Have Cancer (Macmillan Cancer Support)
Coming Out with Cancer: Patients, Experts Discuss Ins and Outs of Sharing a Diagnosis (Fred Hutch)
How to Disclose Your Cancer Diagnosis (MD Anderson)
https://www.mdanderson.org/cancerwise/how-to-disclose-your-cancer-diagnosis.h00-159618645.html
After a Cancer Diagnosis, How Do You Tell Your Kids, Relatives, Friends and Coworkers? (NPR)
https://www.npr.org/sections/health-shots/2024/03/30/1241768606/cancer-diagnosis-talking-family-kids
Sharing Your Diagnosis (This is Living with Cancer)
https://www.thisislivingwithcancer.com/content/sharing-your-diagnosis
Share Your Stories & Ideas (Cancer Moonshot) We know that the best ideas, the stories that will inspire change, and actions that can help deliver on this bold mission are distributed across the United States and beyond. Please share your ideas for how we can focus these efforts and your stories of inspiration and knowledge from your experience with cancer.
https://www.whitehouse.gov/cancermoonshot/share-your-story/
Share Your Story (American Association for Cancer Research) As a patient, survivor, caregiver, or loved one touched by cancer, your story can have an enormous impact. It can provide hope and inspiration to someone who’s recently been diagnosed with cancer or a patient undergoing therapy. Your story can be a compelling reason for a member of Congress to support increased funding of biomedical research. By sharing your story, others will find comfort and encouragement.
https://www.aacr.org/get-involved/share-your-story/
Share Your Story (MD Anderson Cancer Center) Tell us how you are confronting cancer. Perhaps you are a doctor or a donor. A caregiver or friend. Or even a patient yourself. Your story may provide strength and support to others who are facing cancer. Thank you for sharing it with us. By submitting your story, you give your consent for MD Anderson to contact you about using your story in our efforts to inspire others with cancer. Your story will not be shared without your express authorization.
https://www4.mdanderson.org/cancer_survivors/Story.cfc?method=index
Share Your Story (Susan G. Komen) Sharing your personal story can provide solace to yourself and offer hope for others. Submit your own story below. Need help on what to say? Consider one of these conversation starters. What advice would you give to someone else who just received a diagnosis? How has having breast cancer changed your outlook? What gives you strength during treatment? What support have you found especially helpful? What can co-survivors do to help?
https://www.komen.org/submit-your-story/
Share Your Story of Help and Hope (CancerCare) Sharing your story gives you the opportunity to express yourself on your own terms and to help support others. Being open about your experiences helps others affected by cancer feel more connected.
https://www.cancercare.org/stories/share
Share Your Survivor Story (National Coalition for Cancer Survivorship) NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis. That experience has value and can be a transforming, positive force. By sharing your story of how you have been touched by cancer, you are supporting the national cancer survivorship movement. Your lived experience fuels our advocacy and empowers others to support improvements to quality cancer care. NCCS will feature stories and photos on our communication channels as we advocate for policies that impact the cancer community.
https://canceradvocacy.org/share-your-survivor-story/
Share Your Story (Cure Magazine) There are so many questions that come with a cancer diagnosis — questions about treatment, side effects, caregiving, survivorship and more.
Your stories help us achieve our mission of combining science and humanity to make cancer understandable. To share your story, submit it via a Word document to editor@curetoday.com for your chance to have your story highlighted here, and please be sure to include "Share Your Story" in the subject line. CURE® accepts submissions of personal essays from readers relating to their own cancer experience. Submission of your work to CURE® does not guarantee publication. CURE® does not offer compensation for general submissions.
https://www.curetoday.com/share-your-story
Share Your Story: How Has Cancer Impacted Your Life? (Cancer Support Community/Gilda's Club) Your Story Can Make a Difference. Would you like to help raise awareness about concerns among people impacted by cancer that need attention and action? Are you looking for ways to offer encouragement to other cancer patients, caregivers, and loved ones? Tell us how cancer has impacted you — and let others know they are not alone. Everyone impacted by cancer has a unique story to share. Perhaps cancer has impacted you physically, emotionally, mentally, spiritually, or financially. Whether you are a patient or a survivor, a caregiver or a loved one of someone who has been diagnosed with cancer, sharing your story can provide hope, inspiration, and encouragement to others going through similar experiences.
https://www.cancersupportcommunity.org/share-your-story-how-has-cancer-impacted-your-life
Share Your Breast Cancer Story (Breastcancer.org) When you share your personal experience with breast cancer, you can help to encourage and inspire more people. If you have been diagnosed or are caring for a loved one with breast cancer, we want to hear from you.
https://www.breastcancer.org/about-us/form/share-your-story
Share Your Cancer Story (The Patient Story) Whether you’re a current cancer patient, care-partner or have completed your cancer journey, we want to hear from you. Simply fill out the form below to get started.
https://thepatientstory.com/share-your-story/
Your Voice. Your Cancer Story. (American Cancer Society) Lending your voice to make a difference is powerful. Sharing your story makes statistics and data become real. It is what puts a human face to a disease. Cancer.
https://act.fightcancer.org/a/yourcancerstory
It's Important to Share the Story of Your Cancer Journey (THANC- Thyroid, Head & Neck Cancer) Share your experience. Tell your story so people undergoing treatment can better understand the journey that lies ahead—help them cope with their diagnosis.
https://thancguide.org/resources/share-your-story/
Oncology on Canvas® (Eli Lilly) For two decades, Oncology on Canvas® has provided people in the cancer community an opportunity to share their stories through art and narrative. The program, a partnership between Lilly, the National Coalition for Cancer Survivorship and the Cancer Support Community, serves as a creative outlet for patients, their loved ones and their care teams. Originally a competition, the program encourages submissions of all types, including poetry, watercolor; oil and acrylic painting; pastels; photography; and mixed media artwork. You don’t have to be a professional artist to experience the power of creative expression. Share your story today.
https://www.lilly.com/disease-areas/cancer
Submission form: https://www.myregistrationc.com/OncologyOnCanvas/ArtExhibition
CancerCare: Talking to Kids about Cancer
PACT Parenting at a Challenging Time: Providing parent guidance consultations to parents with cancer and their partners
Home — Marjorie E. Korff PACT Program (mghpact.org)
How to Gently Explain Cancer to a Child (Caring Bridge) Explaining a loved one’s cancer diagnosis to a child can be challenging. What do you say? How do you answer their questions? To help you with these questions, we asked an expert on the topic to offer advice. Mary Farr, a retired pediatric hospital chaplain, shares how to gently explain cancer so your child can understand.
How to Gently Explain Cancer to a Child | CaringBridge
Crossroads4Hope Suuport4Families program provides individuals, and families with social and emotional support for children, teens, and parents/caregivers at any point in their cancer journey. Our interdisciplinary team of social workers and child life specialists put into practice a family- centered approach to care that includes consulting with schools and community professionals to ensure individualized care for each family is best suited for their needs. We support families impacted by a pediatric cancer diagnosis, adult cancer diagnosis, coping with loss due to cancer, and professionals working with children, teens, and families. We empower families with communication strategies, share positive coping mechanisms, offer opportunities for creative expression, engage members through social connections, and provide emotional support in individual, family, and group formats.
https://crossroads4hope.org/support4families/
Cancer education for families/children: https://crossroads4hope.org/education/
Talking to Kids About Cancer (City of Hope) Talking with your children about your illness may be one of the most difficult things you've ever had to do. However, avoiding the subject does not prevent children from learning about it another way. Although they may not show it, children of any age can usually sense when something is wrong. Like adults, children can pick up on tension and stress and are likely to notice a change in the family routine.
Talking to Children About a Cancer Diagnosis | City of Hope (cancercenter.com)
Bright Spot Network provides young cancer survivors who are parents of small children with a safe space for individual and familial healing, recovery, and reconnection. We focus on young parents and guardians caring for young children at the time of diagnosis, including those diagnosed during pregnancy. Bright Spot Network serves families where a parent, or primary caregiver, of a preschool-age kid (ages 0-6 or pregnant at the time of diagnosis) has cancer. We serve people from diagnosis to survivorship, those in active treatment and living with cancer, understanding that a cancer "journey" can be long for the patient and their family.
Helping families through cancer -Bright Spot Network
Bright Reads Discussion Guides Talking about cancer with your kids is hard. We get it. Bright Reads books are one way to start this difficult conversation. We developed the below discussion and activity guides to accompany our Bright Reads books so that parents, guardians, grandparents, and other loved ones have additional questions and activities at their fingertips to help keep these conversations going or to be able to easily return to them at another time. Each guide has suggested ages for discussion questions and activity ideas, but you know your child the best. Change the questions as you see fit. We hope that you use these in the ways that best work for you and your child.
Bright Reads Discussion Guides — Bright Spot Network
Parenting with Cancer Educational Videos
Parenting with Cancer — Bright Spot Network
Pickles Group -Kids supporting kids impacted by parental cancer. Pickles Group’s mission is to provide free peer-to-peer support and resources to kids who are impacted by their parent or guardian’s cancer. Having a parent with cancer can be a lonely, isolating experience. Pickles Group creates thriving communities of kids supporting kids whose parents have cancer. Pickles kids strengthen resilience, have fun with friends who get them, and heal along the way. One in twenty kids will experience a parent’s cancer diagnosis before they graduate high school. With more than 3 million children and teens in the U.S. who are affected, there is an overwhelming and unmet need for the support we provide.
PICKLES GROUP - Nonprofit for kids whose parents have cancer.
How a Child Understands Cancer (Cancer.net/ASCO) Written for parents of children with cancer, but the age breakdowns can be helpful for sharing a parent's cancer diagnosis with their children.
How A Child Understands Cancer | Cancer.Net
For Parents: Talking with Children About Cancer (Dana-Farber Cancer Institute) Many parents tell us that when they are diagnosed with cancer, they're most concerned about how the disease and its treatment will affect their families. Often their top priority is to limit both the short- and long-term effects of their illness on their children. When you first get your diagnosis, you may worry about how to let your children know that you have cancer. While you have taught your kids about many other important things, talking to them about your illness probably takes you off guard.
Talking With Children About Cancer | Dana-Farber Cancer Institute
Kid to Kid: Your Parent Has Cancer (MD Anderson Cancer Center Youtube Educational Video) Understanding a cancer diagnosis is hard enough. But when you're a kid and your parent is diagnosed with cancer, it's really hard to understand. This video provides information for children about cancer and answers to common questions kids have about a parent’s diagnosis and treatment.
Kid to Kid: Your Parent Has Cancer (youtube.com)
Suggested Books for Children
Understanding Statistics Used to Guide Prognosis and Evaluate Treatment (cancer.net)
Understanding Cancer Prognosis (NCI)
https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis
Cancer Survival Rate: What it Means for Your Prognosis (Mayo Clinic)
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517
Predict (Breast Cancer) by NHS Predict is an online tool that helps patients and clinicians see how different treatments for early invasive breast cancer might improve survival rates after surgery. It is endorsed by the American Joint Committee on Cancer (AJCC).
https://breast.predict.nhs.uk/
Prognosis Prediction Tools (Nomograms) by Cancer Type (Memorial Sloan Kettering Cancer Center)
https://www.mskcc.org/nomograms
Clinical Calculators (Treatment Outcomes) (MD Anderson Cancer Center)
https://www.mdanderson.org/for-physicians/clinical-tools-resources/clinical-calculators.html
Medical Calculators (MD Anderson) (chemotherapy responses, residual cancer burden, neoadjuvant therapy outcomes, clinical staging, pathological staging, colon cancer survival, rectal cancer survival, pancreas cancer survival calculators)
https://www3.mdanderson.org/app/medcalc/
Cleveland Clinic Risk Calculator Library (by cancer type/disease state)
Cancer Prediction Tools (Fox Chase Cancer Center) Includes nomograms for kidney, prostate, bladder, testicular, penile, adrenal, and upper tract urothelial cancers. Cancer nomograms are models that take multiple, disease-specific inputs and use those factors to predict the likelihood of a specific outcome, for example the probability of remaining disease-recurrence free for five years after surgery based on staging and grading information.
https://cancernomograms.com/nomograms/
Oral Cancer Survival Calculator (National Cancer Institute)
https://seer.cancer.gov/survivalcalculator/
A Cancer Survival Calculator Is Being Developed Using Artificial Intelligence (American College of Surgeons, 2023) The next steps are to finalize a user interface that will allow the use of the Cancer Survival Calculator in clinical practice, followed by pilot testing the calculator at selected cancer centers.
Audre Lorde in The Cancer Journals
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