Questions to Ask About Breast Cancer
For someone newly diagnosed with breast cancer, or the person going to appointments with them, who wants to know what to ask the breast surgeon, the oncologist and the breast care nurse. The questions follow the order the decisions tend to arrive in: the diagnosis (type, stage and receptor status), surgery, drug treatment, radiation, living with treatment, and follow-up. Each has a note on what a clear answer sounds like or what to do with it, and none of it is medical advice.
The questions
Each question, and why to ask it
Diagnosis
What type of breast cancer do I have: is it invasive, or still contained in the ducts?
Why ask it
Ductal carcinoma in situ and invasive cancer lead to very different conversations, and the two get blurred when the news is new. Leave with the full name from the pathology report in writing, ductal or lobular included, and a copy of the report if the office can print one. It is the first thing a second doctor or a helpline nurse will want read out.
What stage is it, and which parts of that could change after surgery?
Why ask it
Before an operation the size and the lymph nodes are judged from scans and a needle sample, and the final word comes from the tissue that is removed. A careful doctor will say 'as far as we can tell so far'. The follow-up is which finding would move the stage up or down.
Has it reached the lymph nodes under my arm, and how will you know for certain?
Why ask it
The answer may come in steps: an ultrasound, perhaps a needle sample, then the nodes taken at surgery. 'They look clear on the scan' is good news that is not yet final, and it helps to hear that said now and not after the operation.
Is it hormone receptor positive, and is it HER2 positive or negative?
Why ask it
These results, for estrogen, progesterone and HER2, do most of the work of deciding which drugs you are offered. If one is still at the lab, find out the day it is due and treat any plan made before then as a draft.
Is this early breast cancer that you are aiming to cure, or has it spread beyond the breast and nodes?
Why ask it
People often leave the first visit without having heard this in plain words. If it has spread to other parts of the body, the aims and the treatments are different, so the next thing to ask is what the plan is meant to achieve and how you will know it is working.
What is the whole plan as you see it today: which treatments, and which one comes first?
Why ask it
Breast cancer treatment is usually several things in a row, and a first visit can dwell on the operation alone. A full answer goes through surgery, drug treatment and radiation one at a time, with a yes, a no or 'that depends on the pathology' against each. Write down what every 'depends' is waiting on, since grade, size and the results still at the lab are what settle them.
What grade is it, and does that mean it is growing slowly or quickly?
Why ask it
Grade is about how the cells look under a microscope and is a different thing from stage, though the two numbers are easy to swap in your memory. Write them on separate lines. A higher grade is one of the reasons a team may suggest chemotherapy, so ask how much weight it carries in your plan.
How large is it, and is there more than one area in the breast?
Why ask it
Size compared with the breast, and whether the cancer sits in one spot or several, shapes which operations are on offer. If the doctor wants an MRI or more biopsies first, ask what they are looking for and whether the other breast has been checked.
Do I need scans of the rest of my body, or are they not needed at my stage?
Why ask it
Whole-body scans are not ordered for everyone with breast cancer, and being told you do not need one is not a corner being cut. Either way you should hear the reason, and with a no, which symptoms would change it.
Should I have genetic testing for BRCA and other inherited genes, and will the result be back before I choose an operation?
Why ask it
An inherited gene change can alter which surgery you would pick, so the timing matters as much as the test. Bring the cancers on both your mother's and your father's side, with ages if you know them. Who qualifies, how long the result takes and who pays are local rules, so get this hospital's version of all three.
What should I tell my sisters, daughters and other relatives about their own risk?
Why ask it
Wait for the genetic result if one is coming, since it changes the message. Then get a sentence your relatives can repeat to their own doctors, including your age at diagnosis. Brothers and sons belong on the list when an inherited gene is involved.
How many weeks do I have to decide, and is there time for a second opinion?
Why ask it
Fear makes every day feel dangerous, so get the doctor's real window as a date and not as 'soon'. If you want another opinion, have this office send the slides, scans and reports ahead so the second team is not waiting on paperwork.
Who is on my breast team, and who do I call between appointments?
Why ask it
You may be dealing with a surgeon, a medical oncologist, a radiation oncologist and a plastic surgeon, each seeing one part. Many centers have a breast care nurse or nurse navigator who holds the whole picture, and that person's name and direct line are worth more than any leaflet. Where there is no such role, find out which doctor is coordinating.
Surgery
Can I choose between a lumpectomy and a mastectomy, or does something about my cancer decide it?
Why ask it
When both are possible, the surgeon should say so and not simply name one. Have them compare the two for your case on three things: the chance of cancer returning in the breast, survival, and what further treatment each would bring. 'It is up to you' with no comparison is not enough to decide on.
If I chose a mastectomy, could I still need radiation?
Why ask it
People sometimes pick the bigger operation to be done with treatment and then learn afterward that radiation is advised anyway. The surgeon may not know until the pathology is back, but can tell you which findings would lead to it. Weigh that before the date is set.
Is there a medical reason to remove the other breast as well?
Why ask it
Separate two things in the answer: what it would do to the chance of a new cancer on the other side, and whether it changes the outlook for the cancer you have now. Those are not the same, and a gene result can shift the first. It cannot be undone, so take the answer home before deciding.
Would a sentinel node biopsy be enough for me, or might you take more nodes?
Why ask it
The more nodes that come out, the more there is to say about arm swelling and stiffness later, so you want to know the surgeon's threshold. Find out whether the decision to remove more is made during the operation or at a later one, so you know what you may wake up to.
What happens if the edges of the tissue you remove are not clear?
Why ask it
This is the question of margins, and it applies mainly to lumpectomy. Sometimes a second, smaller operation is needed, and hearing that beforehand keeps it from feeling like something went wrong. You can ask how often this surgeon's patients go back for one.
What are my reconstruction options, including an implant, my own tissue, or staying flat?
Why ask it
Each is a different amount of surgery and a different recovery, and staying flat belongs on the list as a choice in its own right. Try to meet the plastic surgeon before the operation date is fixed and to see photos of healed results, including ones that needed revising. Which of these is paid for depends on the country and the insurer, so check before you settle on one.
If I need radiation, how does that change the timing or type of reconstruction?
Why ask it
Radiation can affect how reconstructed tissue or an implant settles, and teams handle the order differently. The reassuring sign is that the breast surgeon, plastic surgeon and radiation doctor have talked to each other. When each one sends you to another for the answer, find out whose decision it is.
How does recovery compare between the operations I am choosing from?
Why ask it
Have the surgeon set them side by side: nights in hospital, drains, weeks before driving and lifting, time off work, and how the arm and chest feel afterward. If one of the options includes reconstruction, have that recovery counted in and not quoted separately.
Drug treatment
Do I need chemotherapy, and how much would it lower the chance of this coming back?
Why ask it
A solid answer points to features of your cancer, such as the receptors, the nodes and the grade, and not to habit. Ask for the benefit as two figures, your risk with it and your risk without it. Some teams use a calculator for this and will turn the screen toward you.
Would a genomic test on the tumor, such as Oncotype DX, help decide whether I need chemotherapy?
Why ask it
These tests read the tumor's own genes, which is separate from testing you for inherited ones. They are used for some hormone receptor positive cancers and not for other types, so 'it would not apply to you' can be a complete answer. If it does apply, find out how long the result takes and whether the decision waits for it.
Would you give chemotherapy or other drugs before the operation, and what would that gain?
Why ask it
Treatment first is sometimes offered to shrink a tumor or to see how it responds, and it changes the whole order of the months ahead. If it is suggested, ask what a good response would allow, for example a smaller operation. If it is not, ask why surgery first suits you better.
If my cancer is HER2 positive, which targeted drugs would I have, and for how long?
Why ask it
Targeted treatment for HER2 often runs on well past the end of chemotherapy, which surprises people who had counted the weeks. Get the full length, how it is given, and whether your heart will be checked along the way. Skip this one if your result was HER2 negative.
What does triple negative mean for my treatment?
Why ask it
One for people whose report says so: the cancer tested negative for both hormone receptors and for HER2, so the tablets and antibodies aimed at those have nothing to work on. The useful follow-up is which treatments carry the plan instead, and whether immunotherapy or a trial is part of the picture at this center.
Will I need hormone therapy, which drug would it be, and for how many years?
Why ask it
For hormone receptor positive cancer this is often the longest part of treatment, counted in years of a daily tablet or regular injections. Which drug is suggested can depend on whether you have been through menopause. Ask what those years are buying you, in numbers, because that is what you will want to remember in year three.
What do people find hardest about staying on hormone therapy, and what can be done about it?
Why ask it
Hot flashes, aching joints and low mood are the reasons people quietly stop. You are listening for a next step attached to each: a different drug, a change of timing, something for the symptom. Agree now that you will call before stopping, not after.
Will treatment stop my periods or make it harder to have children, and is there a fertility specialist I should see first?
Why ask it
Say your age and whether you might want a pregnancy later, even if you have not made up your mind. Egg or embryo freezing, where it is offered, is arranged before chemotherapy begins, so a referral made this week is worth more than one made next month. Check as well whether your periods are likely to come back and which contraception is suitable meanwhile.
Is there a clinical trial for my type and stage that I should hear about before we start?
Why ask it
Some trials only take people who have not yet had surgery or a first dose, which is why the time to raise it is now. A doctor who says 'not here' can often still tell you where to look. Joining is optional, and so is leaving.
Radiation
Will I need radiation, and which areas would be treated?
Why ask it
The answer may be the breast, the chest wall, the nodes near the collarbone or armpit, or some of these. The area decides the side effects, so have it drawn on a diagram. If you hear 'we will know after surgery', ask what result would tip it.
How many sessions would I have, over how many weeks?
Why ask it
Courses range from about a week to several weeks, and it is fair to ask whether a shorter one suits your case and why or why not. Then find out how long you are in the building each day, because the treatment takes minutes and the travel and parking may take the morning.
How will you keep the radiation away from my heart and lungs?
Why ask it
This matters most when the cancer is in the left breast. Centers have different methods, such as treating while you hold a deep breath or while you lie face down, and a confident team will tell you which one they use and why. Reassurance with no method named is a reason to ask again.
What will my skin and my energy be like during radiation, and for how long afterward?
Why ask it
Redness, soreness and a tiredness that builds toward the end are the usual subjects here, and both can keep going for a while after the last session. Advice on creams and washing differs between centers, so follow theirs and not a friend's. Find out who looks at your skin each week.
Is skipping radiation ever reasonable for someone of my age with my results?
Why ask it
For some people with small, low-risk cancers this is a real discussion, and for many it is not. Either way the answer teaches you what radiation is doing in your plan. A firm yes should come with the finding in your results that makes the case.
Living with treatment
Can you lay out the next six months for me on a calendar?
Why ask it
This is the plan with dates on it: operation, recovery, each cycle of chemotherapy, radiation, the start of tablets. It will slip, and the doctor will say so, but a penciled calendar is what lets you line up help and decide what to cancel. Mark the weeks the team expects to be hardest.
Can I keep working through this, and which stretches would I need off?
Why ask it
Describe the job itself, whether that means lifting, a long commute or a classroom of children with colds, because the answer differs for each phase. Have the team mark the stretches people in your kind of work usually take off: after the operation, around each chemotherapy cycle, during the weeks of radiation. Leave and sick pay depend on your employer and country, so take those dates to whoever handles them before promising anything at work.
Which side effects could stay with me for good, such as numb fingers, early menopause or a swollen arm?
Why ask it
Short-term effects get most of the airtime, and the lasting ones are the ones that should weigh in a decision. Have each one tied to the treatment it comes from, with how likely it is on your drugs and doses. Where two options differ mainly in a lasting effect, that is worth knowing before you choose.
Can I use a cold cap to try to keep my hair during chemotherapy?
Why ask it
Scalp cooling is offered in some centers and not others, works better with some drugs than others, and adds time to each session. Ask whether it suits your regimen and what it costs there. If hair loss is expected, find out when it usually starts, so the wig or the short cut happens on your schedule.
Am I at risk of lymphedema, and who do I tell if my arm or hand starts to swell?
Why ask it
The risk rises with the number of nodes taken and with radiation to the armpit, so the answer should be about your operation and not about patients in general. See whether your arm will be measured before surgery for comparison. A ring or sleeve that has become tight is something to report, not to wait out.
Will any of these drugs affect my heart or my bones, and how will you watch for that?
Why ask it
Some breast cancer drugs call for heart scans and some for bone density checks, and those checks can fall between the oncologist and your regular doctor. Get the name of each one, how often it is due and who orders it. Mention any heart trouble or past fractures now.
During chemotherapy, what temperature or symptom means I call at once, and on which number?
Why ask it
There is usually an exact figure and a line that is answered at night, and both belong on the fridge and in the phone of whoever lives with you. Find out what to say when you call and what to tell an emergency department about your treatment. 'Call the clinic' does not help once the clinic has closed.
What will I need help with at home, and for roughly how long?
Why ask it
This one is as much for the person coming along as for the patient. Think lifting, driving, children, drains after surgery, and the low days after each chemotherapy cycle. A specific answer means friends who say 'tell me what you need' can be given a date and a job.
Is there anything I can do myself, through exercise, food or cutting back on alcohol, that helps?
Why ask it
Expect a short, modest list and be wary of anyone promising more. Ask what is known for your type of cancer and what is simply good for getting through treatment. Bring the names of any supplements you take, since the team will want to check them against your drugs.
Who can I talk to about how treatment changes the way I feel about my body and about intimacy?
Why ask it
Surgery, menopause symptoms and tiredness all reach into this, and clinics rarely raise it unless you do. You are asking for a person: a nurse, a counselor or a specialist the team trusts. If you are handed a leaflet, ask who you could talk to once you have read it.
Where do I get a breast prosthesis or post-surgery bras, and is any of it paid for?
Why ask it
Fitting services, what is supplied and what is reimbursed vary by country, insurer and hospital, so ask how it works where you are treated. Find out how soon after surgery you can be fitted and what to wear until then. The breast care nurse is often the one who knows.
Who here helps with costs, insurance forms and benefits?
Why ask it
Money questions are better put to a financial counselor, social worker or benefits adviser than to the surgeon, and many people do not learn such a person exists until they ask. What you are covered for or can claim depends on your country, employer and plan. Get a name and book a time early, before the first bills or forms arrive.
Follow-up
When treatment ends, how often will I be seen, and by whom?
Why ask it
Care often passes from the hospital team to a regular doctor at some point, and the handover is where appointments get dropped. Ask who is responsible in year one and in year five, and what each visit includes. Put the first date in your calendar before active treatment ends.
Which tests will I have at check-ups, and why not regular scans of my whole body?
Why ask it
Many people expect routine whole-body scans and blood tests and are unsettled when the plan is a mammogram and an examination at set intervals. Hear this center's schedule and the reasoning behind it. After a mastectomy or reconstruction, check what imaging, if any, applies to that side.
What is the chance of this coming back, and over how many years?
Why ask it
Only ask when you want the figure, and say so if you would prefer a general picture. For some types the risk is concentrated in the first few years and for others it stretches further, which is part of why treatment lengths differ. A good second question is what you are already doing that brings the number down.
Which symptoms should I report between check-ups, and how long should I wait before reporting one?
Why ask it
Without a rule, every ache becomes a question you cannot settle at midnight. Ask for a short list, such as a new lump, a change in the scar or a pain that does not ease, and a time limit in the doctor's own words. Then check who you call, since by then you may no longer be on the clinic's active list.
Will I get a written summary of my treatment and a plan for what comes next?
Why ask it
Years from now a new doctor will ask which drugs and doses you had, and memory will not supply them. Some centers hand out a treatment summary and care plan as routine and others only on request. Keep it with your pathology report.
How long before I feel like myself again, and who helps if the fear of it returning does not ease?
Why ask it
The end of treatment can be harder than people expect: the appointments stop and the worry does not. An honest doctor will say that energy and mood can take months, and will know who to refer you to. Get that name now, while you are still coming in regularly.
Taking these questions to your breast cancer team
Practical guidance for the conversation itself
Before the appointment
Bring the reports you already have
Take the biopsy report and any imaging reports, on paper or on your phone, even if you think the clinic has them. Results sent between hospitals do not always arrive, and a doctor with the report in hand can answer from it instead of from memory.
Sort the questions by decision
A first visit is usually about one or two choices, often the operation and whether drugs come before it. Mark the questions that bear on those and ask them before anything else. Radiation, follow-up and long-term questions can wait for a later visit or for the nurse, and nobody gets through the whole list in one sitting.
Give your companion the pen
Whoever comes with you should do the writing. Agree beforehand that they note the exact words for type, stage and receptor results, and that they say 'can you repeat that?' when you go quiet. Compare what each of you heard on the way home, while it is fresh.
Ask about recording
Many clinics let you record the conversation on a phone, and some want to be asked first. The rules differ by place, so raise it at the start. A recording lets a relative who could not come hear the explanation as it was given.
Who to ask what
The breast surgeon
The type of operation, lymph nodes, margins, recovery and, together with the plastic surgeon, reconstruction. The surgeon is often the first specialist you meet and may be the one who explains the biopsy, so the diagnosis questions frequently land here too.
The medical oncologist
Chemotherapy, hormone therapy, targeted drugs, genomic tests on the tumor, fertility and clinical trials. If you have not been given an appointment with one, ask whether you will be and when, since some drug decisions come before surgery.
The radiation oncologist
Whether radiation is advised, which areas, how many sessions, and how the heart, lungs and any reconstruction are protected. You may not meet this doctor until after surgery. If your choice of operation depends on radiation, ask to see them sooner.
The breast care nurse or navigator
Day-to-day questions: who to call, what to bring, how drains and dressings work, prostheses, support groups, and anything you forgot to ask the doctors. Not every hospital has this role under this name, so ask who fills it there.
The genetic counselor
Testing for inherited genes, what a result would mean for your surgery and for your relatives, and how results are shared within a family. Not every hospital has one on site, and the referral, the wait and the cost are different everywhere, so find out early who arranges it for you.
Words on the pathology report to have explained
In situ and invasive
In situ describes abnormal cells that are still inside the duct or lobule where they began. Invasive means cells have grown into the surrounding breast tissue. Ask which word is on your report, since one report can carry both.
ER, PR and HER2
ER and PR are the estrogen and progesterone receptors, and HER2 is a protein some breast cancers make in excess. Each is reported as positive or negative, sometimes with a score. Ask what each of yours means for the drugs you will be offered.
Grade and stage
Grade, usually 1 to 3, describes how different the cancer cells look from normal ones. Stage describes how far the cancer extends: its size, the lymph nodes and anywhere beyond. Ask for both, and for which parts of the stage are still to be confirmed.
Margins and sentinel nodes
A margin is the rim of tissue around what the surgeon removes, and a clear margin means no cancer cells were found at its edge. Sentinel nodes are the first lymph nodes the breast drains to, taken to check for spread. Ask how your team defines 'clear', because the measure is theirs to explain.
Adjuvant and neoadjuvant
Adjuvant treatment is given after surgery and neoadjuvant treatment before it. The words turn up in letters and on appointment lists without explanation. When you see one, ask what the treatment is for at that point in the plan.
Where these conversations go wrong
Measuring yourself against someone else's breast cancer
A friend's treatment was built on her type, stage and receptors, which may share nothing with yours beyond the name. When a comparison is worrying you, take it to the team as a question: 'My sister had chemotherapy and I am not being offered it. Why is that?'
Deciding in the room
You can ask for time before choosing an operation. Say 'I would like to think about this and come back to you', and ask what date you need to answer by. A team that is comfortable with that is a good sign.
Reading results alone on the portal
Pathology and scan reports can reach a patient portal before anyone has called you. Ask at the start how results are released at this hospital, and whether you can choose to hear them from a person first. If you do open one, write down the words you do not know and take them to the nurse.
Looking up survival figures on your own
Published numbers describe large groups treated in past years and cannot see your receptors, your age or your plan. If you want a figure, ask your oncologist for one that takes your results into account, and ask what it does and does not include.
Leaving the hard question unasked
Fertility, intimacy, money and whether this can be cured are easy to carry home unasked. Put the one you dread at the top of the page, or hand the page to the doctor. They have been asked it before.