Questions to Ask Your Oncologist at Your First Cancer Appointment

Knowledge is power.

A cancer diagnosis is less daunting than it used to be. Scientific knowledge, treatments and health outcomes are continually improving for many kinds of cancer, and early detection is more possible than ever. Still, hearing the words, “We’ve found something suspicious,” is concerning. If that suspicion is confirmed as cancer, the uncertainty about what comes next can be 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 in Baltimore. “They need a full raft of information because they’re just going to be scared until they get it.”

Start where you are.

“First and foremost, everybody comes at this with a little bit of a different perspective,” says Dr. David Cohn, a gynecologic oncologist and interim chief executive officer at the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute in Columbus. “There’s a lot of folks who are looking on the web and doing a ton of research. And others basically say, ‘I’m scared of this. Someone told me I had cancer, and here I am.'”

Given those vast differences in starting point, Cohn says that the questions to ask during your appointment “are really dependent upon where someone starts their journey.”

In fact, he often starts with a question of his own: “What do you know about this so far? And what does your physician or provider say that we’re going to do for you?”

Getting that starting point helps him determine how best to relay important information to the patient and involves the patient in their care. Once that’s established, there are some basic questions you should be sure to ask when you first see an oncologist.

What will we cover at this appointment?

Knowing what to expect will help ease the nerves. While making the appointment, inquire about the basics: Will a physical exam be involved, or will the focus be on information and discussion?

Also ask about what you need to bring, such as insurance cards, contact information for any of your care team, test results or medical records. To get organized, the American Society of Clinical Oncology offers a comprehensive list of preparatory questions to ask about your appointment before you even get there.

If the appointment has an informational component, Dr. Laurie Carr, an oncologist at National Jewish Health in Denver, recommends asking your oncologist to write down key terms they’re sharing with you, such as the specific type of cancer you have, stage and grade. She says she does this to purposefully slow herself down as she’s meeting with a new patient.

Don’t be afraid of also asking your oncologist to repeat what they said. You can try bringing a loved one along to the meeting — or having them join by speakerphone — and encouraging them to take note as well. Two sets of ears can catch more details than you alone, especially when you’re anxious.

Ultimately, “There’s always another visit. You don’t have to know everything when you walk out the door the first time, and you don’t have to become an expert in the disease on your first visit,” Carr notes.

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 or find out if there’s still any uncertainty about your diagnosis.

“Many times, patients just don’t know the body part from (where) the cancer originated, and I think that’s a really important first step: to make sure that there’s an understanding about what type of cancer it is that you’re dealing with,” Cohn says.

Knowing the kind of cancer you have will influence every decision that comes after. Once your diagnosis is clear, the next step is learning more about the cancer. This includes patients knowing what subtype of cancer it is.

“For instance, if they were told they had lung cancer: ‘Is it a specific subtype of lung cancer?’ We know there are many kinds,” Nelson says.

You will also learn more about how advanced your cancer is.

“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.

What is the standard treatment for my condition?

Cancer treatment choices may include the following as standalone or combination treatments:

— Monitoring or observation.

— Comfort or supportive care.

— Surgery.

— Traditional chemotherapy.

— Targeted medications.

— Radiation.

— Immunotherapy.

There are clinical pathways and physician guidelines in place to provide standard treatment recommendations for most types of cancer based on disease stage and other factors. However, each patient’s diagnosis is unique, so a typical 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,” says Dr. Lidia Schapira, a professor of medicine at Stanford University School of Medicine and director of cancer survivorship at the Stanford Comprehensive Cancer Institute in California. “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.'”

One question to consider is if your oncologist expects 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; some cancer centers, for instance, 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.

What is the goal of treatment?

It can be scary to ask your doctor what the aim of treatment is, but establishing that before you make decisions can help you choose the best path. Ask whether the goal is to cure the cancer or whether the disease has already progressed to the point where symptom management or palliation is the aim.

“That makes a huge difference in terms of what side effects you’re willing to put up with and how hard you’re willing to push treatment,” Carr says.

What are potential side effects of treatment?

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, such as nausea and vomiting with chemotherapy. Dr. Yung Lyou, a hematology-oncology specialist at the Crosson Cancer Institute at Providence St. Jude Medical Center in California, says that “some treatments may make patients feel weak and dizzy, so it may be best to have a family member or friend drive them.” So, you should also ask whether you’ll need someone to take you to and from treatment sessions.

Some side effects may linger indefinitely, like chemo fog or “chemo brain,” which refers to thinking or memory problems during or after treatment. Other side effects can be life-threatening, such as infections, or long term, like nerve damage. Extensive surgery to remove cancerous growths may affect your appearance or certain bodily functions.

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.”

What will my recovery look like?

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.

Some cancer treatments can be hard on the body, making you feel lousy. Lyou recommends asking whether you or a caregiver should be prepared to take time off from work around treatments.

Work and financial planning is also a typical concern with recovery, explains Dr. Gary Zhou, chief of hematology/medical oncology with Sobrato Cancer Center at Santa Clara Valley Medical Center in California.

“If you are unable to work due to your cancer or related medical treatments, then state disability or insurance will be needed to supplement the drop in income. It can take up to a few months before patients receive their disability or insurance checks to replace the lost income. Therefore, I tell patients on the first day to start the process early to avoid potential financial hardships that can add unnecessary stress to an already difficult situation.”

If you aren’t able to work through most or all of your treatment, you may need to ask your human resources specialist about the Family and Medical Leave Act. Many workplaces are now recognizing that it is important to give special accommodations to cancer patients to allow them to be most productive, adds Dr. Wui-Jin Koh, senior vice president, chief medical officer for the National Comprehensive Cancer Network, or NCCN, an alliance of leading cancer centers based in Plymouth Meeting, Pennsylvania.

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 the cancer is expected to grow.

— The cancer size and location.

Timely treatment is an important consideration for cancers.
“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 judiciously until all information is available.”

For instance, he says, for someone with lung cancer, waiting a few days or perhaps a couple of weeks may be reasonable, During that time, providers can complete full staging evaluation, assessment of patient and other factors, such as health-related social needs and confirmation of biomarker testing results that allow them to start with the most appropriate targeted therapy.

What other providers will I see?

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 of the care team usually consist of:

— Medical oncologist.

— Surgeon.

Radiation oncologist.

Pathologist.

— Other clinicians, such as a nurse, nutrition specialist or social worker.

You will also continue seeing a primary care provider for other conditions. For example, “the patient’s primary care issues, such as hypertension or high cholesterol, should continue to be treated,” Lyou explains. “Therefore, it makes sense to direct medication refills toward the primary care provider or relevant specialist that was managing the non-cancer problem.”

It’s also important to bring a complete list of all medications you’re taking, Zhao adds.

“Cancer drugs may interact with other drugs, which can either increase side effects of cancer drugs or decrease effectiveness of cancer drugs,” he points out.

At major cancer hospital systems, you may also have access to a clinical navigator to help guide you through the cancer care process. 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.

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 (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.

However, “recent studies have shown that only about 70% of patients get appropriate guideline-recommended 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.”

Carr also recommends asking whether you need any additional imaging tests, such as a brain MRI, to determine whether the cancer has spread.

“I think it’s important for patients to know: ‘What is it that has to be done before I can start my treatment? And what can I do as we get going?'” she says.

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, either in person or through telemedicine. 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 dedicated to advancing research through clinical trials,” Schapira says. “In many cases, what (patients) hear in their second opinion confirms that the treatment could be delivered in the community, and they are reassured. But for those with rare cancers or with cancers associated with a poor prognosis, a second opinion may provide access to more options for treatment and lead to better outcomes.”

Can I see my pathology reports?

Some patients benefit from seeing their scans or pathology reports.

“I’ll ask if the patient wants to see it. Some don’t, but a lot of them do,” Carr explains.

Today, most cancer centers have online patient portals to allow patients to access all their medical records online, adds Koh. 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 on hand, particularly if you’re seeking an outside second opinion.

“Do you think it would be valuable to have my pathology slide reviewed at a significant treatment center?” is a reasonable question to ask, according to Nelson.

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 can impact offspring, particularly.”

Breast cancer, endometrial cancer, ovarian cancer and colorectal cancer are among the 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 component.

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 oncofertility, specialists work with cancer patients and survivors to maximize their reproductive potential.

“Those are sometimes difficult conversations to have,” Cohn says, “but it’s just critically important for patients to have an understanding about what the long-term and short-term implications are of treatments, including sexual and reproductive health.”

During the often narrow window of opportunity before cancer treatment begins, you should have a chance to consider fertility preservation options. Egg or embryo freezing or sperm banking, for example, are among the techniques that reproductive specialists use. Radiation oncologists can shield pelvic and genital regions during radiation 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?”

Cohn also recommends asking: “Are there any additional treatments that are currently experimental that we should consider?”

What will my treatment cost?

Cancer treatment can be extremely expensive. The financial toll of cancer therapy is a key consideration and should be part of the conversation you have with your provider, Cohn says.

To avoid unpleasant financial surprises, ask about costs ranging from office visit copays 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.

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. When you ask, your oncologist 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, Nelson says. Hoping that you’re one of those who will live longer is not a false hope, he adds — it’s a real hope.

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, Koh says. “And if not: ‘Why?'”

Established organizations that release such guidelines include ASCO, the American Society for Radiation Oncology and NCCN.

Patient Resources

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:

American Cancer Society.

National Cancer Institute.

National Comprehensive Cancer Network.

Essential Questions for Your Oncologist

Here’s what to ask during your first cancer-related visit with your oncologist:

— What will we cover at this appointment?

— What type of cancer do I have?

— What is the standard treatment for my condition?

— What is the goal of treatment?

— What are potential side effects of treatment?

— Will I be hospitalized?

— What will my recovery look like?

— Do I need to start treatment right away?

— What other providers will I see?

— Do I need additional tests?

— Should I get a second opinion?

— Can I see my pathology reports?

— How might this cancer affect my family?

— Will I be able to have biological children?

— Are clinical trials available?

— What will my treatment cost?

— What is my prognosis?

— Do you offer evidence-based, guideline-driven care?

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Questions to Ask Your Oncologist at Your First Cancer Appointment originally appeared on usnews.com

Update 08/18/23: This story was previously published at an earlier date and has been updated with new information.

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