Knowledge is power.
A cancer diagnosis is less daunting than it used to be. For many kinds of cancer, scientific knowledge, treatments and health outcomes are continually improving. Even so, fear is often the first reaction for anyone who is told, ‘We’ve found something suspicious.’ If that suspicion is confirmed as cancer, the uncertainty about what comes next is hard to handle.
“People hear the words, ‘You have cancer,’ and no clock can tick fast enough to start getting information,” says Dr. William Nelson, director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University. “And they need a full raft of information, because they’re just going to be scared until they get it.” To get a healthy grasp of your individual situation, ask your oncologist the following questions during your first visit.
What will we cover at this appointment?
Knowing what to expect on your first visit will help ease the nerves. While making the appointment, inquire about these basics: Will a physical exam be involved, or is the focus of this visit on information and discussion? To get organized, it helps to be told what to bring — such as insurance cards, test results and reports or contact information for your primary care physician and other doctors you’ve seen. The American Society of Clinical Oncology offers a comprehensive list of preparatory questions to ask about your appointment.
When you meet your oncologist, take a few minutes to get acquainted, suggests Dr. Lidia Schapira, a professor of medicine at Stanford University School of Medicine and director of cancer survivorship at the Stanford Comprehensive Cancer Institute. Just greeting your doctor and starting with an “I” statement like, ‘I’m happy to meet you and I hope we can work together,’ humanizes the conversation and starts building a relationship and partnership, says Schapira, who is also editor in chief of ASCO’s online patient information site.
Can we revisit this information later?
It’s not surprising that patients don’t fully take in all the essential information provided when they meet with their new oncologist. “If I’m overwhelmed during this visit, when can I meet with you so we can discuss or re-discuss things in greater detail?” is a perfectly reasonable request, says Dr. Wui-Jin Koh, chief medical officer for the National Comprehensive Cancer Network.
“Patients should understand that their questions should not be limited to a single opportunity,” Koh says. Along those lines, patients can also ask if they may record the consultation, he adds. “Most clinicians will say: ‘Absolutely.'”
What type of cancer do I have?
Your primary care physician may have given you a tentative cancer diagnosis based on symptoms, screening test results and clinical examination findings. It’s essential to verify the precise type of cancer you have with your oncologist (or find out if there’s still any uncertainty about your diagnosis).
Once your diagnosis is clear, the next step is learning about the stage of your cancer. “The jargon terms for us are the ‘stage’ and ‘grade’ of the cancer,” Nelson says. Depending on how your cancer is classified, the discussion moves to how that impacts your treatment options.
It’s also important that patients know which subtype of cancer they have. “For instance, if they were told they had bowel cancer: ‘Well, what kind of bowel cancer?'” Koh says. “Or if they have lung cancer: ‘Is it a specific subtype of lung cancer?’ We know there are many kinds.”
What is the standard treatment for my condition?
Cancer treatment choices may include surgery, traditional chemotherapy, targeted medications, radiation or immunotherapy as standalone or combination treatments. Clinical pathways and physician guidelines include treatment recommendations for most types of cancer based on disease stage and other factors. However, each patient’s diagnosis is unique, so a standard treatment option may not exist. Making decisions with your physician and having a treatment plan in place can help restore your sense of control.
Whether you also want to do an independent, online information search is entirely up to you. “I had two patients yesterday who literally came in with folders of research articles that they had studied,” Schapira says. “It was their first meeting with me and we were sort of interviewing each other.” However, seeing the effort they had put into gathering all that information let her know how to approach their needs: “I just said, ‘All right, ask me questions.'” By contrast, she adds, other patients who don’t desire as much information might simply say, “I want you to give me a recommendation.”
Why do you recommend this treatment?
Does your oncologist expect this particular treatment to shrink your tumor, cure your cancer or put it into remission? “How could I benefit from this treatment?” is another way to ask.
You also need to know about the different variations on a specific therapy. Surgeons may take different approaches — for instance, some cancer centers offer robotic surgeries, while others do not. “In some cases it’s possible to do less surgery and accomplish the same thing, thus preserving organ function or (allowing) the ability to preserve or improve body image,” Schapira says.”
Do I need additional tests?
Your oncology team pinpoints your cancer diagnosis and specific tumor type. “Especially in this day and age — when so many treatments are guided by biomarkers (biomarkers are specific molecules produced in the body of someone with cancer) — when patients are told their stage or diagnosis, an important question would be: ‘Do I need additional tests?'” Koh says. “Or: ‘Have all appropriate tests and biomarker genomic information been obtained to guide my treatment?'”
With breast cancer, for instance, when biomarkers for estrogen, progesterone or HER2 receptors are expressed, treatment decisions are affected. Similarly, “We used to treat all lung cancers in the same way, more or less,” Koh says. “Now, lung cancers can be divided into 20 or 30 types of cancer depending on the molecular alteration.”
However, “Recent studies have shown that only about 70% of patients get biomarker testing,” Koh notes. “So, patients should be their own advocates and say: ‘What additional testing has been done? Has all the appropriate biomarker and genomic information been obtained?’ That would serve as a confirmation, if not a reminder, to the clinician team.”
What are potential treatment hazards and side effects?
When deciding on any cancer treatment, you need to know about potential downsides. That includes common side effects that you can likely expect, as well as rare but more serious complications, Nelson says.
Cancer side effects may be temporary or short-term, like nausea and vomiting with chemotherapy, or linger indefinitely, like chemo fog or “chemo brain,” which refers to thinking or memory problems during or after treatment. Extensive surgery to remove cancerous growths may affect your appearance or certain body functions.
Who are my cancer team members?
Cancer care is rarely handled by an individual physician anymore. Typically, the multidisciplinary team includes a variety of clinicians with expertise in different care facets. Key members would usually consist of a medical oncologist, surgeon, radiation oncologist, pathologist and oncology nurses at a minimum, Koh says. Nutrition specialists and clinical social workers might also be part of the team for a given patient.
With that village of cancer care providers, a related question becomes: “Who is the quarterback of my care?” Among the variety of team members you see, it helps to know who the point person is — the one you can call anytime you have a question. Even if you don’t ever need to call, Koh says, “there’s the reassurance of having a contact person, a central coordinator of care.”
What types of nutritional and lifestyle support can I receive?
It might not be an immediate concern, but “What kind of nutritional counseling or advice can I get?” is often pertinent for patients with cancer. “Appetite changes and weight issues are very common during cancer treatment,” Koh says. “Not just weight loss — also weight gain.”
Chemotherapy, surgery and sometimes cancer itself can affect a person’s ability to eat. Medical nutrition therapy with input from a registered dietitian nutritionist who has oncology expertise can be critical.
Also, ask about support for lifestyle changes like smoking cessation that can improve treatment outcomes. “A doctor should always ask patients: ‘Do you smoke?’ and ‘How can we help you quit smoking?'” Koh says. However, if the doctor doesn’t ask, patients should, he says, because smoking reduces the effectiveness of treatment for many cancers.
Will I be able to have biological children?
Some cancer treatments can impair your ability to have children, so it’s important to discuss fertility preservation upfront if you’re interested in having kids. In the growing field of onco-fertility, specialists work with cancer patients and survivors to maximize their reproductive potential.
During the often-narrow window of opportunity before cancer treatment begins, you should have a chance to consider fertility preservation options. Embryo or sperm banking, for example, or shielding pelvic and genital regions during radiation therapy, are among the techniques that reproductive specialist use.
Do I need to start treatment right away?
Not every type of cancer requires immediate — or any — treatment. Watching and waiting could be a reasonable choice with a slow-growing cancer that’s unlikely to affect your daily life or survival chances. For instance, prostate cancer is a condition for which your doctor may recommend active surveillance or close observation to monitor the spread of the disease.
Your doctor will discuss these options based on whether your cancer is causing symptoms, how fast or slowly it’s expected to grow and its size and location. With active surveillance, men may undergo periodic blood tests to measure prostate-specific antigen, or PSA, along with other tests such as digital rectal exams, imaging scans or prostate biopsies to make sure cancer is staying well under control.
Some cancers definitely require timely treatment, of course. “We have generally said that delay is not good, but with a big caveat,” Koh says. “It is almost always better — unless there is a true emergency — to wait until all information is available.” For instance, he says, for someone with lung cancer, waiting a few days for biomarker testing results allows them to start with the most appropriate targeted therapy.
Are clinical trials available?
With some types of cancer, you might benefit from participating in a clinical trial for a specific type of treatment. Participating in research can position you to receive promising, state-of-the-art therapy. Along those lines, Schapira suggests, you also could ask: “Are there any drugs in the pipelines that might change my treatment in the near future?”
What is my prognosis?
Getting cold, hard statistics — like average survival rates for a specific cancer diagnosis — isn’t necessarily right for everyone. However, you deserve to understand these figures if you’re interested. By asking your oncologist, he or she can put general outcome numbers into better perspective.
Patients should realize that median survival rates are simply estimates of how long half of people with a certain type, stage and grade of cancer will live, Nelson says. “There are people who don’t live that long,” he says. “There are people who live longer.”
For advanced cancers with wide ranges in survival outcomes, there’s a distinction to be made in what people can expect and what they can hope for, he says. Hoping that you’re one of those who will live longer is not a false hope, he adds — it’s a real hope.
Should I get a second opinion?
If you don’t have local access to a specialty cancer center or academic medical center, you may still be able to benefit from that level of expertise through a one-time consultation. Your doctor may even have a suggestion of where to refer you for another opinion.
“In those situations, sometimes, it’s advisable to get a second opinion at a center of excellence — a place where people are really devoting their lives to study that disease and they’re conducting research,” Schapira says. “In many cases, what (patients) hear just confirms that the treatment could be delivered in the community, and then it’s best for everybody.”
Could an outside pathologist review my slides?
Two heads can be better than one when reviewing tumor biopsy samples. Asking “do you think it would be valuable to have my pathology slide reviewed at a significant treatment center?” is a reasonable request, according to Nelson. “It’s never wrong to ask that question, and it’s easy enough to do.”
Having that second evaluation could make a real difference. For instance, the Kimmel Center is a referral center for pancreatic cancer. When looking at data on these patients, Nelson says, “As much as 24% or 25% of the time or more, we were changing the stage, grade or diagnosis itself.” What causes these disparities? “We have several pathologists who don’t do anything but look at pancreatic cancers,” he explains. That singular focus simply isn’t feasible in most medical settings.
Can I get copies of my medical record and pathology reports?
Today, most cancer centers have online patient portals to allow patients to access all their medical records online, Koh notes. However, some information might not be as readily available, such as a patient’s most recent pathology report or CT scan image. This is important information to have at hand, particularly if you’re seeking an outside second opinion.
It also can be helpful for patients to have their pathology reports and treatment recommendations clearly outlined so they can review these on their own time, he says.
Should genetic testing be done on my tumor?
Cancer genomics is a continually evolving factor in cancer research and treatment. Targeted therapies may be available depending on your cancer’s unique genetic makeup. Tumor DNA sequencing could uncover genetic mutations that pinpoint the precise treatment most likely to be effective against your type of cancer.
How might this cancer impact my family?
“A question that patients might sometimes forget to ask is, ‘Does this cancer have hereditary implications and how might it impact my family?'” Koh says. “We know that a substantial minority of cancers have genes that impact children, particularly.”
Breast cancer, endometrial cancer, ovarian cancer and colorectal cancer are among cancers with strong hereditary links. For example, having a BRCA gene mutation increases the risk of having breast and ovarian cancer, as well as certain other cancer types. Close relatives such as siblings and children may need to be informed and tested for cancers known to have a genetic predisposition.
What will my treatment cost?
Cancer treatment can be extremely expensive. To avoid unpleasant financial surprises, ask about costs ranging from office visit co-pays to whether insurance covers your treatment and if preapproval is required. You can start with your doctor or speak with nurses, social workers and patient navigators. ASCO provides more details on cost-related questions and concerns.
Will I be hospitalized?
One practical question involves whether you’ll be treated as an inpatient or an outpatient.
“If part of your treatment plan involves a complex procedure like high-dose chemotherapy and bone marrow transplant, it’s possible that you will be hospitalized or can expect to be hospitalized for many weeks,” Schapira says. “On the other hand, if you’re being treated for breast cancer, it’s very unlikely that you’ll be hospitalized these days, or, if so, perhaps for (only) one night after your surgery, unless you have a very complicated procedure.”
Are patient navigation services available?
Receiving care in a major cancer hospital system is a challenge. Even getting from point A to point B can be confusing: Where is radiology oncology located? Why is the outpatient chemotherapy clinic on the other side of the campus? How do I find the genetic counselor’s office?
But what’s far more daunting is negotiating all the decisions involved in your treatment. You also can be overwhelmed with the barrage of testing, appointments and consultations to be scheduled and coordinated in a short period of time.
That’s why most cancer centers have clinical navigators on staff, to help guide you through the process and serve as your personal compass through the uncharted territory of cancer care. Patient navigation can start with your initial diagnosis, persist throughout treatment and then move on to survivorship.
“Given the complexity of cancer care these days, it’s worthwhile asking upfront to see what kind of social work or patient navigation systems there might be,” Koh says.
How much help do you anticipate I’ll need at home?
During treatment and recovery, you may experience issues with fatigue and mobility. You could need help with transportation to medical appointments or caregiver support as you cope with side effects. It’s helpful to consider these issues in advance, rather than in the midst of your treatment course, so you can make arrangements ahead of time.
How will treatment affect my life?
With cancer therapy, the best-case scenario is that you resume your regular family and social life, and get back to full physical activity as soon as possible. In some cases, that might not happen for a while. Similarly, while some patients can work throughout much if not all of their treatment, others need to take significant time off to undergo therapy and recuperate. (If that could be the situation for you, consider asking your human resources specialist about the Family and Medical Leave Act, or FMLA.)
“Can I continue to work?” is a pertinent question, Koh says. “And if so, how should I continue to work? What kind of accommodations might be needed? Many workplaces are now recognizing that it is important to give special accommodations to cancer patients.”
Do you offer evidence-based, guideline-driven care?
Several oncology-related, medical organizations develop and continue to refine treatment guidelines and best practices based on evidence gleaned from extensive clinical research and patient outcomes data.
“Is my treatment following well-vetted, professional guidelines?” is worth asking, Kao says. “And if not, why?” Established organizations that release such guidelines include ASCO, the American Society for Radiation Oncology (ASTRO) and NCCN.
Any patient has direct access to resources and information from NCCN and other trustworthy cancer organizations. Among other tips, they suggest in-depth questions to ask providers specific to your individual situation:
Essential Questions for Your Oncologist
Here’s what to ask during your first cancer-related visit with your oncologist:
— What is the purpose of this appointment?
— Can we revisit this information later?
— Which type of cancer do I have?
— What are the standard treatments for my condition?
— Why do you recommend this particular treatment?
— Do I need additional tests?
— What are potential hazards and side effects?
— Who are my cancer team members?
— What type of nutritional and lifestyle report can I receive?
— How could my fertility be affected?
— Do I need to start treatment immediately?
— Are clinical trials available?
— What is my prognosis?
— Should I get a second opinion?
— Could an outside pathologist review my slides?
— Can I get copies of my medical record and pathology reports?
— Should genetic testing be done on my tumor?
— How might this cancer affect my family?
— Will I be hospitalized?
— How much help will I need at home?
— How will my day-to-day work and life be affected?
— Do you offer evidence-based, guideline-driven care?
More from U.S. News
Questions to Ask Your Oncologist at Your First Cancer Appointment originally appeared on usnews.com
Update 09/23/22: This story was previously published at an earlier date and has been updated with new information.