Questions to Ask Your Doctor About Adrenal Cancer

Adrenal cancer appointments move fast, and there is a lot to take in. Most people leave the office and remember only a small part of what was said. That is normal. Stress makes it hard to hold onto new information, and adrenal cancer comes with unfamiliar words like cortisol, mitotane, Ki-67, and ENSAT staging. The best way to protect yourself is simple. Write your questions down before the visit, bring the list on paper or on your phone, and work through it out loud. A written list turns a rushed visit into a real conversation. It also tells your care team what matters most to you.

Bring someone with you if you can. A friend, partner, adult child, or trusted neighbor can take notes while you listen, catch details you miss, and remind you of the question you meant to ask. Many clinics also allow you to record the conversation. It is completely reasonable to ask, "Would it be all right if I record this so I can listen again at home?" Most doctors say yes. If yours prefers not to be recorded, ask for a written summary or a printout of the visit notes instead. And any time you hear a word you do not know, stop and ask. "Can you explain that in plain language?" is one of the most useful sentences in medicine. A good clinician will not mind. If you are the parent of a child with adrenal cancer, ask for the same explanations in the same plain terms, because pediatric adrenal cancer is managed differently from adult disease.

Two questions are especially important in this disease, and you should feel free to ask them directly.

• First, ask your surgeon how many adrenal cancer operations they perform each year. This is not rude. It is one of the most useful facts you can learn, because surgical experience is closely tied to outcome.

• Second, ask whether you should be seen at a high-volume adrenal center before your first operation. Complete removal of the tumor the first time, with clear margins and an intact tumor capsule, is the single strongest factor in long-term outcome that anyone can influence. A first operation done by an experienced adrenal surgeon at an experienced center gives you the best chance at that. If surgery has already happened, these questions still matter for the next steps in your care.

Questions About Your Adrenal Cancer Diagnosis

The first job in adrenal cancer care is naming exactly what you have. Three very different things can look similar on a scan.

1. Adrenocortical carcinoma (ACC) is cancer of the adrenal cortex, the outer layer of the gland, and it is what most people mean by adrenal cancer.

2. Pheochromocytoma comes from the adrenal medulla, the inner core of the gland, and behaves differently.

3. An adrenal metastasis is cancer that started somewhere else, such as the lung, kidney, breast, or colon, and later spread to the adrenal gland.

An adrenal metastasis is not adrenal cancer, and it is treated as whatever cancer it started as. Make sure you know which of the three you are dealing with.

Most adrenal masses are benign, and many are found by accident on a scan done for another reason. Those are called incidentalomas. If you are in the middle of a workup and no one has said the word cancer yet, ask plainly where things stand. The tests used to sort benign from malignant include the size of the mass, how it looks on imaging, and blood and urine hormone tests.

When you get answers, listen for specifics. A confident answer names the tumor type, gives the size in centimeters, gives a stage and says which staging system was used, and names which hormones the tumor is or is not making. Vague answers are a reason to ask again or to seek a second opinion.

• What type of adrenal cancer do I have? Is it adrenocortical carcinoma?

• Could this be a pheochromocytoma instead? How did you rule that in or out?

• Could this be a cancer that started somewhere else in my body and spread to my adrenal gland?

• Are you certain this is cancer and not a benign adrenal tumor such as an adenoma or an incidentaloma? What convinced you?

• How large is my tumor in centimeters, and which adrenal gland is it in?

• Has the tumor grown into any nearby tissue, blood vessels, or organs?

• What stage is my cancer, and are you using the AJCC or the ENSAT staging system?

• What does that stage mean for me in plain language?

• What is my Ki-67 score, and what does that number tell you about how fast the tumor grows?

• Was a Weiss score calculated on my tumor, and what was it?

• Is my tumor making extra hormones? Which ones?

• Which hormone tests did you run, and can you walk me through my results?

• Were my metanephrines checked before surgery to be sure this is not a pheochromocytoma?

• Did I have cortisol testing, an aldosterone and potassium check, and androgen and estrogen levels?

• Was a biopsy done? If not, why not, and is that the right call for me?

• Can I have copies of my full pathology report and my imaging reports?

• Should my pathology be reviewed again by a pathologist who specializes in adrenal tumors?

• Has the cancer spread anywhere? Which scans did you use to check, and was my chest included?

• How many adrenal cancer cases do you personally care for each year, and how many does this center see?

• Should I be seen at a high-volume adrenal center before we make any decisions, especially before surgery?

• Should I have genetic counseling and genetic testing? Which genes would you test?

• If a gene change is found in me, do my parents, siblings, and children need testing too?

• My child was diagnosed with this. Does our whole family need genetic evaluation and ongoing surveillance?

If Pheochromocytoma Is on the Table

Pheochromocytoma is a different adrenal cancer and works differently. It comes from the inner part of the gland and makes catecholamines, the hormones behind adrenaline surges. That means different symptoms (spells of pounding headache, sweating, racing heart, and high blood pressure), different tests, and different genetics. It also means that certain procedures can be dangerous unless you are medicated first. If pheochromocytoma is being considered, these questions are for you.

• Were my plasma free metanephrines or 24-hour urine metanephrines measured, and what were the results?

• Do I need an MIBG or DOTATATE scan, and what would that show that a CT does not?

• Do I need medicine to block the effects of these hormones before any procedure or operation, and for how long?

• Should any biopsy or surgery be delayed until that blockade is in place?

• Should I be tested for SDHx, VHL, RET, or NF1 gene changes?

• Is my tumor considered benign, or is there evidence it has spread?

• Which specialist should lead my care, and does this center have experience with pheochromocytoma specifically?

Questions to Ask About Adrenal Cancer Treatment

For adrenocortical carcinoma that has not spread, surgery to remove the whole tumor is the main treatment and the best chance at long-term control. The goal is what surgeons call a complete resection, meaning no cancer left behind at the edges and no spill of tumor into the abdomen. Because of that, how the operation is done and who does it both matter. Ask whether the plan is open surgery through an incision or laparoscopic surgery through small ports, and ask why that choice was made for your tumor. For larger or more advanced adrenal cancers, many adrenal surgeons prefer an open approach to keep the tumor capsule intact.

After surgery, some people take mitotane, a medicine made specifically for adrenocortical carcinoma that lowers adrenal hormone production and can slow the cancer. Mitotane needs blood level monitoring and has real side effects, and most people on it also need steroid replacement because the drug shuts down normal cortisol production. For adrenal cancer that has already spread, the standard first-line combination is a chemotherapy regimen of etoposide, doxorubicin, and cisplatin given along with mitotane, often shortened to EDP plus mitotane. Radiation is used in some situations, such as the tumor bed after surgery or to treat a painful spot.

As you listen, pay attention to the stated goal of treatment. There is a difference between treatment meant to cure and treatment meant to control the cancer and keep you feeling well. Both are legitimate goals, and you deserve to know which one you are working toward. Ask about hormone symptoms too, because many of them improve after a hormone-producing tumor is removed, and knowing the likely timeline helps you plan.

• What are all of my treatment options, including the ones you are not recommending?

• What is the goal of my treatment? Are we trying to cure this or to control it?

• Will surgery be able to remove all of the cancer?

• Will my operation be open or laparoscopic, and why is that the right choice for my tumor?

• How many adrenal cancer operations like mine have you personally done, and how many does this center do each year?

• Will you need to remove any other organs or structures, such as lymph nodes, part of the kidney, the spleen, or part of the liver?

• Will you remove lymph nodes for staging, and how many?

• What happens if the tumor cannot be completely removed, or if the margins come back positive?

• Will I need mitotane after surgery? Why or why not, and for how long?

• What mitotane blood level are we aiming for, and how often will it be checked?

• What are mitotane's side effects, and how will we manage them?

• Will I need steroid replacement, which steroid, at what dose, and for how long?

• Will I need chemotherapy? Which drugs, how many cycles, and what side effects should I expect?

• Will I need radiation, and what part of my body would be treated?

• Will my hormone symptoms improve after surgery, and how quickly should I expect to feel different?

• Could I have low cortisol after surgery, and what would that feel like?

• Could this treatment affect my fertility, and can I be referred to a fertility specialist before we start?

• Will I be able to keep working, and will I need help at home during recovery?

• How will we know if the treatment is working, and when is the first check?

• What are our options if the cancer comes back or does not respond?

• What will this cost me, and can someone help me understand my coverage?

• Who do I call with a problem at night, on a weekend, or on a holiday?

Questions to Ask About Follow-Up Care

Follow-up care in adrenal cancer is more intensive than in many other cancers, for two reasons. First, recurrence is common, so surveillance scans and hormone tests continue for years. Second, your hormones need managing long after the tumor is gone. If you had a hormone-producing tumor, or if you take mitotane, or if you had one adrenal gland removed while the other was suppressed, your body may not make enough cortisol on its own. That makes steroid replacement and adrenal crisis prevention part of your everyday life.

Adrenal crisis is the one emergency every adrenal cancer patient and caregiver should learn to recognize. It happens when the body does not have enough cortisol to handle physical stress, and it can come on with vomiting, severe weakness, dizziness, belly or leg pain, confusion, and dangerously low blood pressure. It is treatable, and it is preventable, but only if you know the signs, carry an emergency injection of hydrocortisone, and know how to increase your steroid dose when you are sick. This is called stress dosing. Ask to be taught it hands-on, and ask that a family member be taught too.

The other thing to sort out early is who is quarterbacking your care. Most people with adrenal cancer end up with both an oncologist and an endocrinologist, plus a surgeon and often a primary care clinician. Ask who is responsible for ordering your scans, who adjusts your steroids, and who you call first. Also ask what can be done closer to home, since travel to a high-volume center adds up over years.

• How often will I have office visits, and for how long?

• How often will I have scans, and which kind (CT, MRI, or PET)?

• Which hormone or blood tests will be repeated at each visit, and why?

• How long will surveillance continue, given that adrenal cancer can come back years later?

• Which symptoms should I report right away rather than waiting for my next appointment?

• How do I recognize an adrenal crisis, and exactly what should I do if I think I am having one?

• Do I need an emergency hydrocortisone injection kit, and can someone train me and my family to use it?

• Do I need a medical alert card, bracelet, or necklace saying I am steroid dependent?

• What is stress dosing, and can you write down for me when and how much to increase my steroid dose?

• How do I manage my steroids when I have a fever, a stomach bug, surgery, a colonoscopy, or dental work?

• What long-term effects should I expect from mitotane, and which ones go away after I stop?

• Will mitotane affect my thyroid, my cholesterol, my memory, or my balance, and will those be monitored?

• How long will it take for my bones and muscles to recover from having had high cortisol?

• Should I have a bone density scan, and do I need calcium, vitamin D, or bone medicine?

• Will my blood pressure, blood sugar, and potassium go back to normal, and will my medicines change?

• Will I get a written survivorship care plan that lists my treatments and my follow-up schedule?

• Who coordinates between my oncologist, my endocrinologist, my surgeon, and my primary care clinician?

• Can any of my blood draws, scans, or visits happen closer to home, and who would read the results?

• What are the early signs that the cancer has come back, and where does it usually show up first?

• If it does come back, what would our next steps be?

• Is there anything I can do myself that would help, such as exercise, physical therapy, or nutrition support?

Questions to Ask About Clinical Trials

Clinical trials matter more than usual in adrenal cancer, precisely because the disease is rare. Rare cancers have fewer approved treatments, and much of the progress that has happened came from patients who joined studies. Trials test new drugs, new drug combinations, new radiation and surgical approaches, and better ways to use the treatments we already have. Some trials are for people with newly diagnosed disease, and some are for people whose cancer came back or kept growing.

Ask practical questions as well as scientific ones. Because adrenal cancer is rare, the nearest open trial may not be in your city. Distance, time off work, lodging, and childcare are legitimate parts of the decision, and many trials and nonprofits offer travel or lodging help. Ask what the trial pays for and what your insurance is expected to cover, since routine care costs and research costs are usually handled separately. Ask about the schedule too, because trials often require extra visits, extra scans, and extra blood draws.

One more thing worth asking about: even if you do not qualify for a treatment trial, you may be able to join a patient registry or donate tissue to a biobank. For a cancer this rare, that kind of contribution genuinely moves the science forward. You can also look for studies yourself through the NCI clinical trials search.

• Is there a clinical trial that is right for me, either here or somewhere else?

• What is the trial testing, and what phase is it?

• How would being in this trial differ from the standard treatment you would otherwise recommend?

• Why do you think this trial is a good fit for my situation?

• Is there a control group, and could I receive a placebo instead of active treatment?

• What are the possible benefits, and what are the known and unknown risks?

• Am I eligible? What would rule me out?

• Would I need to travel, how far, and how often?

• Is there help with travel, lodging, meals, or parking?

• How many extra visits, scans, and blood draws does the trial add?

• How long does the trial last, and what happens when it ends?

• Who pays for the study drug, and who pays for my routine care during the trial?

• Will my insurance cover care at a hospital outside its network, and can someone help me check?

• What happens if I have a serious side effect while on the trial?

• Can I leave the trial at any time, and would that affect my regular care here?

• If I leave or the trial closes, what treatment would I get next?

• Will I be told the results of the trial when it is finished?

• Will I still see you, or does my care transfer to the trial team?

• Is there an adrenal cancer registry, tissue bank, or natural history study I could join even if I am not eligible for a treatment trial?

• Are there any studies looking specifically at hereditary adrenal cancer or at pediatric adrenal cancer?

Questions to Ask About Coping and Support

The emotional weight of adrenal cancer is its own thing, separate from the tumor. You may be dealing with a rare diagnosis nobody around you has heard of, a body that looks and feels different, and a treatment schedule that takes over your calendar. On top of that, hormones can affect mood directly. Too much cortisol can cause depression, anxiety, irritability, poor sleep, and trouble with memory and concentration. Steroid replacement and mitotane can also affect mood and thinking. If you feel like a different person, say so out loud, because there may be a treatable reason.

Ask what support the cancer center already has. Most have an oncology social worker who can connect you with counseling, transportation help, financial assistance, and paperwork for time off work. Many have a genetic counselor, which matters a great deal in adrenal cancer, since hereditary syndromes account for a real share of cases and especially of pediatric cases. Many also have palliative care, which is symptom and quality of life care that you can use at any stage of illness, including alongside treatment meant to cure. It is not the same thing as hospice.

Support groups can be harder to find for rare cancers, but they exist, and general rare cancer and caregiver groups help too. Ask about online options if there is nothing local. And do not leave your caregiver out of these questions. The person driving you to appointments, tracking your steroid doses, and watching for adrenal crisis carries a heavy load and needs support of their own.

• Is there an oncology social worker on my team, and how do I reach them?

• Can you refer me to a counselor or psychologist who works with cancer patients?

• Are there support groups for adrenal cancer, or for rare cancers, that I could join in person or online?

• Are there groups or peer matching programs for caregivers, or for parents of a child with cancer?

• Could my mood changes, anxiety, or memory trouble be caused by cortisol or by my medicines?

• If so, will those symptoms improve, and how long might that take?

• Should I see a psychiatrist about medicine for depression, anxiety, or sleep, and will it interact with my cancer treatment?

• Is there a genetic counselor here, and can I be referred even if my testing has not started?

• How do I tell my family that this cancer might be inherited, and what should they do with that information?

• Are there resources specifically for parents of a child with adrenal cancer, including school support?

• How do I talk with my own children about my diagnosis in a way that fits their age?

• Can someone help me with the cost of treatment, prescriptions, travel, or lost income?

• Is there help with insurance appeals, disability paperwork, or medical leave forms?

• What support is available for my caregiver, including respite and counseling?

• Is palliative care available to me now, alongside my treatment, to help with pain, fatigue, nausea, and sleep?

• Can I get help with body image changes such as weight gain, extra body hair, skin changes, or hair loss?

• Can I talk with someone about sexual health and intimacy changes?

• What can help me manage fear of recurrence, especially in the weeks around scans?

• How do I explain a cancer nobody has heard of to my family, friends, employer, and coworkers?

• Is there a nurse navigator who can help me keep track of appointments and paperwork?

Bringing Your Questions to Your Visit

A few small habits make a big difference. Choose your top three questions and ask them first, because visits sometimes end sooner than you expect. Keep the whole list in one place, on paper or in your phone, and add to it between visits as questions occur to you. Write the answers down in the moment, or have your companion do it, since memory after an appointment is unreliable for almost everyone.

Bring a written list of every medicine and supplement you take, including doses. Bring your steroid schedule if you are on one. Bring copies of outside scans and pathology reports if you are seeing a new doctor, or arrange for them to be sent ahead. Before you leave, read back what you understood, in your own words, and ask your clinician to correct anything you got wrong. Then ask three closing questions every time: what is the next step, when will I hear from you, and who do I call if something changes before then.

If you did not get to everything, ask how to send the rest. Many clinics answer questions through a patient portal or a nurse line, and that is often faster than waiting for the next visit.

For more background before your appointment, you may find it helpful to check out all of our guides on adrenal cancer

Sources:

• Questions to Ask Your Doctor About Your Diagnosis, National Cancer Institute

• Questions to Ask Your Doctor About Treatment, National Cancer Institute

• Questions to Ask Your Doctor About Cancer, National Cancer Institute

• Questions to Ask Your Doctor About Survivorship, National Cancer Institute