Questions to Ask Your Oncologist About Ovarian Cancer
For a woman diagnosed with ovarian cancer, or the person going with her, who wants to know what to ask the gynecologic oncologist. The list runs in the order the appointments usually do: the diagnosis and stage, surgery, fertility and menopause, chemotherapy, genetic testing, then maintenance treatment and how a recurrence is watched for. Each question has a note on what a good or a worrying answer sounds like, and none of it is medical advice.
The questions
Each question, and why to ask it
Diagnosis
What type of ovarian cancer is this: high-grade serous, or one of the less common kinds?
Why ask it
The type steers more of the plan than most people expect, because clear cell, mucinous, low-grade serous, germ cell and borderline tumors are each handled differently from the common high-grade serous kind. Have the full name written down exactly as the pathology report gives it.
What stage do you think it is today, and will that only be certain after surgery?
Why ask it
Ovarian cancer is often staged from what the surgeon finds and what the lab sees in the tissue, so a stage read off a scan can move. Have the oncologist mark which parts are known and which are a best estimate, and get the date by which the final stage will be settled.
Where is the cancer inside my abdomen and pelvis, and can you show me on the scan?
Why ask it
Seeing it on the screen, or sketched on paper, makes the later talk about surgery far easier to follow. Listen for the places named beyond the ovaries, such as the omentum, the bowel surface, the diaphragm or the lymph nodes, and write them down.
Are you aiming for a cure, a long remission or control, and what does remission mean with this cancer?
Why ask it
Oncologists use 'remission' with care in ovarian cancer, and it does not always mean the same as 'cured'. Hearing the aim in plain words early makes every later choice easier to weigh. If the answer is vague, say that you would like it straight.
What was my CA-125 before treatment, and is it a useful marker in my case?
Why ask it
CA-125 is not raised in every woman with ovarian cancer, and it can go up for reasons that have nothing to do with cancer. Note the number and the date, since later results are read against it, and if yours was normal ask what the team will track instead.
Has the diagnosis been confirmed by a tissue sample, or does it rest on scans and blood tests so far?
Why ask it
Before an operation the diagnosis is sometimes a strong suspicion and not yet a lab result, which is normal when surgery is going to come first. If chemotherapy is planned first, expect to hear that a biopsy or a fluid sample was taken, and ask when its report will be in.
Is there fluid in my abdomen or around my lungs, and what can be done about it while I wait?
Why ask it
Fluid is a common reason for the bloating and breathlessness that send people to a doctor in the first place, and draining it can bring relief before any treatment starts. Find out whether a sample was sent to the lab and who to call if the swelling builds up again.
How soon does treatment have to begin, and is there time to be seen at a specialist center first?
Why ask it
Most answers come as a number of weeks, and that number is what tells you whether a second opinion fits. An oncologist who says 'yes, and we will send the scans and slides' is a good sign. Be wary only if the question is brushed aside without a reason.
Does this hospital run clinical trials for newly diagnosed ovarian cancer, and would I have to join before treatment starts?
Why ask it
Entry rules for first-line trials are often tied to what you have not had yet, so a trial raised after the operation or the first infusion may already be closed to you. A reassuring reply names a trial or says who has checked. Where a hospital runs few ovarian cancer trials, the follow-up is which center within reach runs more.
Surgery
Will my operation be done by a gynecologic oncologist, and how many of these does that surgeon do in a year?
Why ask it
Surgery for ovarian cancer is a specialty of its own, and surgeons who do it regularly tend to give the number without fuss. If the operation would be done by a general gynecologist or a general surgeon, ask how referral to a gynecologic cancer center works where you live.
Do you recommend surgery first, or chemotherapy first with the operation partway through?
Why ask it
Both routes are standard, and the choice turns on where the disease sits and how well you would stand a long operation. What you want is the reasoning for your scan and your health, not a house rule. If chemotherapy comes first, ask after how many cycles surgery would follow.
What do you expect to remove, and what might be added once you can see inside?
Why ask it
The usual list is the uterus, both ovaries and tubes, and the omentum, a fatty layer that hangs over the bowel. It can extend to part of the bowel, the spleen, the lining of the diaphragm or lymph nodes. Go through the consent form line by line so nothing on it is news afterward.
How likely is it that you can take out all the cancer you can see, and what could prevent that?
Why ask it
Surgeons plan this operation around leaving no visible disease, so the question goes to the heart of it. A candid surgeon points to the spots on your scan that worry them. A named obstacle tells you more than general reassurance.
Could part of my bowel be removed, and might I wake up with a stoma?
Why ask it
Better heard in the clinic than discovered in the recovery room. Ask whether a stoma would be temporary or permanent, and whether a stoma nurse can see you beforehand to explain it and mark the site.
Would you look inside with a camera first to judge whether a full operation makes sense?
Why ask it
Some teams do a short keyhole look before committing to a large operation and others decide from scans alone. Neither answer is a warning sign. You are finding out how the decision gets made, and whether it means two trips to the operating room.
Will this be open surgery, and how many nights in the hospital should I plan for?
Why ask it
Extensive surgery is commonly done through a long vertical cut, with keyhole surgery kept for narrower situations. Get the practical figures: nights on the ward, whether a stay in intensive care is planned, and the weeks before you can drive, lift or work.
What are the main risks of this operation for someone with my health, and how can I get fitter for it?
Why ask it
A useful answer mentions your own heart, lungs, weight and nutrition and not only a printed list. Some centers run a program of walking, protein and breathing exercises in the weeks before, so ask what is offered and what you can start tonight.
After the operation, will you tell me how much cancer was left behind, if any?
Why ask it
Have it put plainly: nothing visible, small amounts, or more than that. It bears on what follows, and many women never hear it because nobody thinks to say it on the ward. Ask too when the final pathology and stage will be ready.
Who looks after me in the weeks after surgery, and what should make me call the same day?
Why ask it
Fever, a wound that opens or leaks, a swollen calf, shortness of breath and vomiting are the kind of thing that tends to be on the list, but get your team's own version. Before you are discharged, save the number for nights and weekends in your phone and in your companion's.
Fertility and menopause
I may want children: is there any version of this surgery that keeps my uterus and one ovary?
Why ask it
Fertility-sparing surgery is considered for some early cancers and for certain types, such as germ cell and borderline tumors, and it is usually not offered for advanced disease. Say this at the first visit, before a date is set. A clear no with the reason is still a good answer.
Can I see a fertility specialist before treatment starts, and how long a delay would that mean?
Why ask it
Freezing eggs or embryos takes time and involves hormone injections, so two answers are needed: whether it is safe with your type of tumor, and whether the delay is acceptable. Who pays varies by country, insurer and clinic, so ask how it works there.
Will the operation put me into menopause overnight, and what should I expect in the first weeks?
Why ask it
Removing both ovaries before the natural menopause stops their hormones at once, which is a sharper change than the gradual kind. Hot flashes, broken sleep and low mood can arrive while you are still recovering, so agree on what will be offered before the operation and not once you are struggling.
Is hormone replacement therapy safe with my type of ovarian cancer?
Why ask it
This depends on the type, because some ovarian cancers respond to hormones and others appear not to, and teams differ in what they advise. Do not settle for a general yes or no. Have the oncologist say what the answer rests on for your pathology, and which non-hormonal treatments exist if it is a no.
How will my bones and heart be looked after if I reach menopause years early?
Why ask it
Early menopause is linked with thinner bones over time, so listen for a bone density scan, vitamin D and weight-bearing exercise. For the heart, the talk is usually about blood pressure and cholesterol. Settle who orders each check, the oncology team or your regular doctor, because this is the kind of job that slips when two clinics each think the other has it.
What helps with vaginal dryness, painful sex or lost desire after treatment?
Why ask it
Few women are asked about this, and many assume nothing can be done. Find out who the right person is at this center, whether a menopause clinic, a pelvic floor physical therapist or a counselor, and whether your partner is welcome at that appointment.
Chemotherapy
Which chemotherapy drugs would I have, how many cycles, and how often?
Why ask it
Carboplatin with paclitaxel is the pairing most often named, though the schedule varies, with some centers giving part of it weekly. Get the plan as dates on a calendar, and ask which days after each dose people usually feel worst.
Which side effects should I expect from these drugs, and will I lose my hair?
Why ask it
With paclitaxel, hair loss is usual and tends to begin a few weeks in, so raise scalp cooling and wigs before the first dose and not after it. Tiredness, nausea, aching joints and low blood counts are the other effects teams most often describe. Get in writing the temperature at which you must call, because teams treat a fever during chemotherapy as urgent.
If chemotherapy comes first, when do you decide about surgery, and what would rule it out?
Why ask it
The usual checkpoint is a scan and a CA-125 after a few cycles. Find out what the team needs to see to go ahead, and what the plan becomes if they do not see it. An answer with a date for that review is better than 'we will see how it goes'.
Would you add bevacizumab or another targeted drug to my chemotherapy, and why or why not?
Why ask it
Bevacizumab is given with chemotherapy for some women and continued afterward, and whether it suits you depends on your stage, your surgery and your other health problems. The reasoning matters more than the yes or no. Ask what it would add to the side effects and the monitoring, such as blood pressure checks.
Is chemotherapy given straight into the abdomen, or heated chemotherapy during surgery, something you offer?
Why ask it
Both exist, they are offered in some centers and not in others, and specialists disagree about who benefits. A good answer explains this center's view and its reasons. If the reply is only 'we do not do that here', ask whether it would be worth hearing from a center that does.
How likely is lasting numbness or tingling in my hands and feet, and what happens if it starts?
Why ask it
Nerve damage is a known effect of paclitaxel and can outlast treatment. Report it early, since doses and schedules can be adjusted, and mention if your work or your hobbies depend on your fingers. Typing, sewing and playing an instrument are worth saying out loud.
Will you follow my CA-125 during chemotherapy, and what would a good fall look like?
Why ask it
For women whose CA-125 was raised at the start, the trend through the first cycles is one of the things the team watches, alongside scans and how you feel. Have them say what they would hope to see by the third cycle, and what they would do if the number stalled.
Do I need chemotherapy at all if the cancer was found at stage I?
Why ask it
For some early, low-grade cancers surgery may be all the treatment recommended, and for others chemotherapy is still advised. It turns on the exact substage, the grade and the type. Ask which line of your pathology report tips the decision, and what the gain would be in your case.
Genetic testing
Should I have genetic testing for BRCA1, BRCA2 and other inherited genes, even with no cancer in my family?
Why ask it
Testing is widely offered to women with epithelial ovarian cancer whatever the family history, because inherited changes turn up in families with no obvious pattern. If you hear 'no need, nobody in your family had it', ask how testing is arranged where you are and for a referral to genetics.
Will the tumor itself be tested for BRCA changes and for HRD?
Why ask it
This is a second test, run on the cancer tissue and not on your blood or saliva, and it can find changes you were not born with. HRD stands for homologous recombination deficiency, and the result feeds into which maintenance drugs are considered. Ask for the date it is due, since it is wanted by the end of chemotherapy.
Who will go through my genetic results with me: you, or a genetic counselor?
Why ask it
Results are not always a clean yes or no. A 'variant of uncertain significance' is a common and confusing one, and it usually changes nothing until more is known. Time with a counselor is worth asking for, both for that and for working out what to say to your family.
If I carry a BRCA change, what does it mean for my treatment and for my risk of other cancers?
Why ask it
There are two halves to the answer. One is about the drugs for this cancer, and the other is about your breasts, since the same genes raise that risk. Find out who will arrange breast screening, because the ovarian team may assume someone else is doing it.
If my result is positive, which relatives should be offered testing, and how do they get it?
Why ask it
Men carry and pass on these gene changes too, so brothers, sons and your father's side of the family all count. Ask for a letter you can hand to relatives that names the exact variant. How they are tested and who pays depends on their country and their insurance.
If my test is negative, is my family still at higher risk because of my diagnosis?
Why ask it
A negative result does not wipe out a family history, and the tests do not cover every possible gene. Ask what, if anything, your sisters and daughters should mention to their own doctors. 'Nothing further' is a fine answer when it comes with a reason.
Could Lynch syndrome be relevant to my type, and has the tumor been checked for it?
Why ask it
Lynch syndrome comes up most with the endometrioid and clear cell types, and labs can screen tumor tissue for signs of it. It matters beyond this cancer, since it bears on colon and uterus checks for you and your relatives. If your type is high-grade serous, expect a short answer.
Could a genetic result affect insurance for me or for my relatives?
Why ask it
The protections differ by country, sometimes by state, and by the kind of policy, and health cover may be treated differently from life or disability cover. Put this to the genetic counselor before your relatives are tested, and ask how it works where each of them lives.
Maintenance and recurrence
Once chemotherapy ends, would you recommend a maintenance drug, and which one?
Why ask it
The usual candidates are a PARP inhibitor taken by mouth, such as olaparib or niraparib, or bevacizumab by infusion, sometimes both. A solid answer ties the choice to your BRCA and HRD results and to how the cancer responded. 'We give it to everyone' deserves a follow-up question.
How long would I stay on maintenance treatment, and what makes people stop early?
Why ask it
Courses are often measured in years, so the day-to-day effects count: tiredness, nausea and low blood counts are the ones usually mentioned, with regular blood tests early on. Ask whether the dose can be lowered before giving up, and whether the drug is approved and paid for where you live.
How often will I be seen after treatment, and will you check my CA-125 at every visit?
Why ask it
Practice differs. Some teams test at each visit and others only when there are symptoms, because a rising number in a woman who feels well raises a hard question about when to start treatment again. Hear your team's approach, then decide whether you want to be told the number each time.
If my CA-125 goes up but I feel well and the scan is clear, what would you do?
Why ask it
Settle this before it happens, because it is the situation that causes the most worry between visits. The options are usually to repeat the test, to scan, or to wait and watch. A team with a clear plan for it can say so in two sentences.
What would a recurrence feel like, and after how many days of a symptom should I call?
Why ask it
The usual list is bloating that does not ease, feeling full quickly, pain in the abdomen or pelvis, and a change in bowel or bladder habits. All of them overlap with ordinary complaints. Ask for a rule counted in days, and for the name of the person who wants to hear about it.
What is the chance of it coming back at my stage, and when is that most likely?
Why ask it
Recurrence is a real part of the conversation with advanced ovarian cancer, and oncologists expect to be asked. Tell them first how much detail you want, a number or a general sense, because a straight figure steadies some people and flattens others. Nothing says it has to be asked at the first visit.
If it does come back, what would treatment look like, and what does 'platinum-sensitive' mean?
Why ask it
Teams count the months between your last platinum chemotherapy and a recurrence, and a longer gap generally leaves more room to use those drugs again. The point of asking now is to hear that a next step exists, and whether further surgery or a trial would be part of it.
What are the signs of a blocked bowel, and where do I go if they start?
Why ask it
Ovarian cancer and the surgery for it can both affect the bowel, so this warning is specific to you and not a general one. Vomiting, a swollen belly, cramping pain and passing no gas or stool are what teams usually describe. Find out whether to call the clinic or go straight to an emergency room, and what to tell the staff there.
When treatment ends, can I have a written summary with my stage, surgery result, drugs and gene results?
Why ask it
Any new doctor or trial team will want the same handful of facts: type and stage, what was left after surgery, which drugs and how many cycles, the date of your last platinum dose, and your BRCA and HRD status. One page with all of it saves weeks of chasing records later.
Getting clear answers from a gynecologic oncologist
Practical guidance for the conversation itself
Before the appointment
Collect the reports, and the operative note if there is one
Bring the pathology report, the scan reports and your CA-125 results with their dates. If the cancer was found during an operation at another hospital, the surgeon's operative note is the paper a gynecologic oncologist will most want to read. How you request records, and whether there is a fee, depends on the hospital and the country, so ask the front desk how it works there.
Write down the family history on both sides
List relatives on your mother's and your father's side who had ovarian, breast, prostate, pancreatic, colon or uterine cancer, with rough ages if you know them. The genetics conversation goes faster with it on paper, and it is fine to write 'not known'.
Mark the five that cannot wait
This list is longer than any one visit. Mark the questions that belong to the decision in front of you, usually the type, the stage and the order of surgery and chemotherapy, and leave maintenance and follow-up for a later appointment.
Decide how much you want to hear about outlook
Some women want survival figures at the first visit and some never do. Tell the oncologist at the start which you are, and tell the person coming with you, so nobody asks on your behalf for a number you did not want.
In the room
Bring someone, and split the work
You ask and they write, with this list in their hands so they can see what has been skipped. If nobody can come, ask at the start whether you may record on your phone or put a relative on speaker. Clinics have their own rules about recording.
Get the names spelled out
Have the type, the stage, each drug and each gene test written down as the oncologist would write them. The exact words are what a second opinion, a trial coordinator or a search at home will need, and they are hard to rebuild from memory.
Say the plan back
Before you leave, repeat it in your own words: what happens first, on roughly what date, and what is still being decided. Misunderstandings surface at that moment, when they are still easy to put right.
Ask what each number rests on
When you are given a percentage, ask who it describes, such as women with your type and stage, and how recent the figures are. A number drawn from women treated years ago may not describe your situation.
Words you will hear
Debulking or cytoreductive surgery
Two names for one thing: an operation to remove as much visible cancer as possible. 'Optimal' and 'complete' describe how much was left, and surgeons use them in specific ways, so ask what the word means in your own operative report.
Neoadjuvant chemotherapy and interval surgery
Neoadjuvant means chemotherapy given before the operation. Interval surgery is the operation done partway through the course, with the remaining cycles given afterward.
Germline and tumor testing
A germline test looks at the genes you were born with, from blood or saliva, and its result matters to your relatives. A tumor test, also called somatic, looks at the cancer tissue. HRD testing is done on the tumor and is one of the results that guides maintenance treatment.
Maintenance therapy
Treatment that carries on after chemotherapy has finished, with the aim of delaying a return of the cancer. It is not the same as more chemotherapy, and whether it is offered depends on your results and on what is approved where you live.
Platinum-sensitive and platinum-resistant
Labels that come up only if the cancer returns. They describe how long it stayed away after carboplatin or cisplatin, and they shape which drugs are considered next. Ask where your team draws the line between the two.
Second opinions and specialist centers
When it is worth the trip
The moments that count are before the first operation, when the type is a rare one, and when the cancer has come back. Those are the points where a center that sees a lot of ovarian cancer may plan things differently.
How to ask
Say that you would like a gynecologic oncologist at another center to look at the plan before you start, and ask the office to send the scans, the pathology slides and the notes. Cancer clinics handle this request all the time. Check with the second center that everything has arrived before you travel.
Keep the clock in view
Ask your own oncologist for the latest date treatment should begin, then book the second opinion inside it. Some centers offer a records review or a video visit, which can be quicker than traveling. Whether that is paid for depends on your insurer or health service.
Ask about trials while you are there
A larger center may run trials your own hospital does not. Ask whether you could take part while having routine treatment closer to home, since the arrangements differ from one trial to the next.