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Questions to Ask Your Doctor About Penile Cancer
Appointments go fast. You may hear twenty minutes of new information, some of it about parts of your body you have never discussed with a stranger, and then find yourself in the parking lot realizing you forgot to ask the one thing that mattered most. That is not a failure on your part. It is what happens to almost everyone. The single most useful thing you can do is write your questions down before you go and take the list in with you. The National Cancer Institute suggests exactly that, and it recommends using the questions that fit your situation, adding your own, and skipping the ones that do not apply.
Bring someone with you if you can. A partner, an adult child, a friend, or a neighbor can take notes while you listen, and they will often remember something you missed. It is also fine to ask, "May I record this conversation on my phone so I can listen again at home?" Most clinicians say yes. Recording matters more than people expect, because penile cancer is rare, the vocabulary is unfamiliar, and you will want to replay the part about your stage and your options once the shock has worn off.
Ask your doctor to explain anything you do not follow, as many times as it takes. The American Cancer Society notes that penile cancer staging can be complex and tells patients directly to ask their doctor to explain their stage in a way they understand. A good line to keep in your pocket is, "Can you say that again in plain words, and can you draw it for me?" Nobody thinks less of a patient for asking. The people who get the best care are usually the ones who ask the most questions.
No question about sex, erections, urinating, or hygiene is too embarrassing to ask. Your care team talks about these things every day, and the answers change real decisions about your treatment. The European Association of Urology guideline says outright that clinicians should discuss the effect of treatment on penile appearance, sensation, and urinary and sexual function so that patients are better prepared, which means these conversations belong in the room. If saying the words is hard, you can point, write it on your list, or hand the list over. Finally, know that asking for a second opinion is normal and welcomed. The National Cancer Institute describes second opinions as a routine part of confirming a penile cancer diagnosis and treatment plan, and it even offers help finding one. Good doctors expect it and are not offended by it.
Questions About Your Penile Cancer Diagnosis
This first stage is about getting the facts of your own case straight. Penile cancer is not one disease with one plan. What happens next depends on the cell type, how abnormal the cells look under the microscope, how deep the tumor has grown, whether it has traveled into small blood or lymph vessels, and whether the lymph nodes (small glands that help fight infection) in your groin are involved. All of that lives in your pathology report, which is the document a specialist writes after examining the tissue removed at your biopsy.
Listen for specifics in the answers. A useful answer sounds like "grade 2, T1b, with lymphovascular invasion, which puts you in the high risk group for hidden spread to the groin nodes." A vague answer such as "it is early" is a signal to ask again. The European Association of Urology sorts tumors into low, intermediate, and high risk categories based on T stage, grade, and whether lymphovascular or perineural invasion is present, and that category drives whether you are offered lymph node staging. So it is fair to ask which box you are in and why.
Also listen for how much penile cancer this team actually sees. Because the disease is uncommon, experience matters. The European Association of Urology recommends referring all patients with suspected or confirmed penile cancer to a high-volume expert center for multidisciplinary evaluation, and it says that if direct referral is not possible, your case should at least be discussed with such a center before treatment begins. Asking about volume is not rude. It is one of the most protective questions on this page. Our guide on how penile cancer is diagnosed walks through the tests behind these answers.
What type of penile cancer do I have, and is it squamous cell carcinoma?
What grade is my tumor, and what does that grade mean for how it is likely to behave?
What is my T stage, and how deep has the cancer grown into the tissue of the penis?
Has it reached the erectile tissue inside the shaft?
Does my pathology report mention lymphovascular invasion, meaning cancer cells inside small blood or lymph vessels, and what does that change?
Does it mention perineural invasion, meaning cancer cells around nerves?
Are my surgical margins clear, if I have already had a biopsy or excision?
Was my tumor tested for p16 or for HPV, and what did the result show?
Does my HPV status change my treatment, my follow-up, or my outlook?
Can you feel anything in either groin today, and do you think my lymph nodes are involved?
A normal groin exam can still miss small deposits, so what will you do to check the nodes properly?
Do I need a groin ultrasound, a fine needle aspiration, or a sentinel node biopsy?
Do I need an MRI of the penis, or a CT or PET scan of my chest, abdomen, and pelvis?
Which risk group am I in, low, intermediate, or high, and what does that mean for my next step?
May I have a copy of my pathology report, my scan reports, and my staging summary?
Should my slides be reviewed by a second pathologist who sees penile cancer regularly?
How many men with penile cancer does this center treat in a year, and how many do you personally treat?
Is my case being discussed at a multidisciplinary team meeting, and who is at that table?
Should I be referred to a specialist or academic center, even if only for an opinion?
Does my HPV status mean anything for my partner, and should they mention it to their own clinician?
Should I be tested for HIV, and would the result change my treatment plan?
Questions to Ask About Penile Cancer Treatment
Treatment for penile cancer has two separate questions inside it. The first is what to do about the tumor itself. The second is what to do about the lymph nodes in the groin. They get decided together, but they carry very different side effects, and it is worth keeping them apart in your head so the conversation does not blur.
For the tumor, the range runs from creams and laser treatment for the earliest surface disease, through circumcision, wide local excision, Mohs surgery, glans resurfacing and glansectomy (removing the head of the penis), to partial or total penectomy (removing part or all of the penis), plus radiation therapy including brachytherapy, which places a radiation source right at the tumor. The National Cancer Institute lists surgery as the most common treatment at every stage, with radiation, chemotherapy, and topical immunotherapy also in use. What you want to know is which of these is genuinely on the table for you, and what each one leaves you with afterward.
That last part deserves plain questions and plain answers. The European Association of Urology reports that treatments preserving the penis generally preserve the ability to have erections, though sensation in the glans and orgasm can change, while partial penectomy is linked with poorer sexual outcomes overall. It also reports that urine spraying is more common after partial penectomy than after treatment that preserves the penis, and that many men end up sitting down to urinate. For the groin nodes, ask specifically about lymphedema (long-lasting swelling caused when lymph fluid cannot drain). The guideline advises that men be assessed for genital and lower limb lymphedema at every clinic visit and referred to specialist lymphedema services early, ideally before significant swelling develops. Our full guide on penile cancer treatment covers each option in more detail.
What are all of my treatment options for this type and stage, including the ones you are not recommending?
Which option do you recommend for me, and why that one?
Can any of these options preserve the penis, and am I a candidate?
If we try a treatment that preserves the penis, what is the chance the cancer comes back locally, and what would we do then?
What will each option mean for urinating standing up, and am I likely to spray or need to sit down?
Will I need a catheter, and for how long?
What will each option mean for erections, for sensation in the head of the penis, and for orgasm?
Will I still be able to have sex, and how long after treatment?
Do I need lymph node surgery in the groin, and what exactly is it for?
Can I have a sentinel node biopsy rather than a full groin dissection, and is that offered here?
What is my risk of lymphedema in my legs, scrotum, or genital area, and how bad does it usually get?
Can I be referred to a lymphedema therapist before any swelling starts?
Do I need chemotherapy or radiation, and would that come before surgery, after surgery, or instead of it?
Is the goal of my treatment to cure the cancer, or to control it?
What happens if I wait a few weeks, or if I choose close monitoring instead?
What side effects should I expect in the first weeks, and which ones may be permanent?
Will I need reconstruction such as a skin graft, and who does that part?
How long is recovery, how long in the hospital, and what will I not be able to do at first?
Will I be able to work, and can I do my kind of job during treatment?
Do I need to bank sperm before treatment, and can you refer me now?
Who do I call at night or on a weekend if something goes wrong, and what is that number?
What is this going to cost me, and who here can help me with the bills?
Questions to Ask About Follow-Up Care
Follow-up after penile cancer is not just a formality. Most local and groin recurrences show up in the first two years, which is why surveillance is heaviest early on and lighter later. The European Association of Urology recommends follow-up every three months for the first two years, then less often, for a minimum of five years in total. What happens at those visits depends on how you were treated and whether your lymph nodes were involved.
The other half of follow-up is you. Local recurrence on the penis is often found by physical examination, including by the man himself, and the guideline calls patient education an essential part of follow-up, urging patients to be seen promptly if they notice any change. In practice, that means someone should teach you how to look at and feel your own penis and both groins, and you should know exactly who to call and how fast. Ask for that teaching. It is reasonable to request that a nurse walk you through it once.
Listen also for the long view. Ask about late effects, about who owns your care once the visits spread out, and about a written survivorship care plan, which is a summary of the treatment you had plus a schedule of what comes next. The National Cancer Institute describes these plans and treatment summaries as part of good follow-up medical care. If travel is hard, say so. The European Association of Urology notes that video consultations and outreach clinics can reduce the burden of traveling to a distant specialist center, so it is fair to ask whether some of your care can happen nearer home. Our guide on penile cancer survival rates gives useful background for these conversations.
How often will I be seen in the first two years, and how often after that?
What happens at each visit, and how long will each one take?
Which tests will I have and when, and will that include examining my groins?
Do I need an ultrasound of the groin, and if so, how often and for how long?
Do I need CT or PET scans, and what decides that?
Do I need a repeat biopsy to confirm the area is clear after cream or laser treatment?
How long does surveillance continue, and can we stop at five years?
What exactly should I watch for at home between visits?
Can someone show me how to examine my penis and both groins properly?
What counts as urgent, meaning I should call the same day rather than wait for my next appointment?
With lymphedema, what are the warning signs of a skin infection in my leg or scrotum, and what should I do?
What late effects should I expect months or years from now?
Will I get a written survivorship care plan and a treatment summary I can keep?
Who coordinates my care overall, and what should my primary care doctor be doing?
Which number do I use for what, and is there a specialist nurse assigned to me?
What happens if the cancer comes back, and could it still be treated with the aim of a cure?
Can any of my follow-up visits happen closer to home, or by video?
Will you check me for lymphedema at every visit, or do I need to raise it?
Questions to Ask About Clinical Trials
Because penile cancer is rare, research on it moves slowly and depends heavily on the men who take part. A clinical trial is a research study that tests a new treatment, a new combination, or a new way of using treatments we already have. The National Cancer Institute also runs supportive care and palliative care trials that look at improving quality of life rather than at the cancer itself, which is worth knowing, because those may fit men who are not looking to change their cancer treatment.
The framing question is not "is a trial better" but "is this particular trial a reasonable option for me right now, compared with standard treatment." The National Cancer Institute is direct about the risks: the study treatment may turn out to be no better than standard treatment, side effects may be worse, and you may need extra visits and extra tests. It also names the real benefits, including access to a treatment not otherwise available and closer monitoring. A trustworthy research team will talk about both sides without pressure.
Pay close attention to money and logistics, because that is where good intentions fall apart. Patient care costs, the ones you would have had anyway, are usually billed to your insurance, while research costs such as the study drug and research-only tests are often covered by the sponsor. Ask whether your plan requires pre-authorization. Ask whether the study helps with travel, lodging, parking, or meals, since some do. And ask what happens if you change your mind, because you are allowed to leave a trial. If you want more background first, see our guide on joining a clinical trial for penile cancer.
Is there a clinical trial that fits my type and stage of penile cancer?
If not here, is there one at another center you would refer me to?
What is this trial testing, and what question are the researchers trying to answer?
What phase is the trial, and what does that phase mean in practice?
Why do the researchers believe this may be better than standard treatment, and why might it not be?
What would I actually do differently from standard treatment?
Is there a control group, and could I be assigned to standard treatment instead?
Will I know which treatment I am getting?
What extra visits, scans, blood tests, or biopsies does the trial require?
What are the added risks and side effects compared with standard treatment?
How long would I be in the trial, and are there check-ups after it ends?
Which costs does the study pay for, and which ones fall to me or my insurance?
Will my insurance cover the routine care costs, and does my plan need pre-authorization first?
Who here can help me deal with my insurance company about this?
Can I leave the trial at any time, and what treatment options would I have if I did?
Will I be told the results of the study, and how?
How far would I have to travel, and how often?
Is there any help with travel, parking, lodging, or meals?
Will my own doctor stay involved in my care while I am on the trial?
Who do I call with questions or problems during the trial, including after hours?
Questions to Ask About Coping and Support
The medical plan is only part of what you are managing. Penile cancer touches identity, body image, sex, and the ordinary daily business of urinating, and the European Association of Urology is blunt that this disease has a significant effect on quality of life with many unmet needs still to address. It recommends that psychological support, counseling, and psychosexual therapy be treated as critical parts of care, not extras. That means asking for them is asking for standard care.
You do not have to wait until you are struggling to ask. Support works better when it is set up early. Ask who is on your extended team, because in a well-organized penile cancer service that list includes specialist nurses, lymphedema therapists, psychologists, counselors, sex therapists, and palliative care clinicians for symptom control. Palliative care in particular is often misunderstood. The National Cancer Institute explains that it can be given alongside treatment aimed at curing cancer, at any point from diagnosis onward, and that it covers physical symptoms, emotions, spiritual questions, caregiver needs, and practical problems such as insurance and employment.
Embarrassment is worth naming out loud, because it is the most common reason men delay care and stay silent afterward. Clinicians who work in this field know that. Researchers have even proposed using written questionnaires about genital self-image and lymphedema specifically to help patients and clinicians raise awkward topics during appointments. If you would rather write it down than say it, that is a legitimate way to communicate. Our guide on penile cancer support lists more places to turn.
Is there an oncology social worker here, and can I meet them?
Can you refer me to a counselor or psychologist who works with cancer patients?
Are there support groups for penile cancer, or for rare cancers, or for men with urological cancers?
Is there a peer support program that could connect me with another man who has been through this?
How do I tell my partner what treatment is going to change, and when should I do it?
Can my partner come to an appointment and ask their own questions?
Is there a sexual health specialist, psychosexual therapist, or sex therapist I can see?
When can I resume sex, and what should I expect the first few times?
What can help if erections, sensation, or orgasm have changed?
Who can help me with money, insurance questions, travel costs, parking, or lodging?
Is there help available if I cannot work for a while?
What support exists for my caregiver, and who looks after them?
Is palliative care available to me now, even though my treatment is aimed at curing the cancer?
Who manages pain, odor, or discharge if those become a problem?
How do I handle fear that the cancer will come back, especially around scan and appointment times?
Are there resources for men who feel too embarrassed to talk about this at all?
Would it be all right if I wrote things down or pointed instead of saying them out loud?
Is there a specialist nurse I can call between appointments?
Bringing Your Questions to Your Visit
A list only helps if it survives contact with a real appointment. A few practical habits make that more likely.
Pick your top three: Mark the three questions you most need answered and ask those first, in case time runs short.
Bring two copies: Keep one and hand one to your doctor. It saves you reading aloud, and it shows exactly what you came for.
Bring a person: Someone to take notes hears things you will miss while you are absorbing news.
Ask to record: A simple "may I record this?" is usually welcomed, and it lets you replay the details at home.
Write the answers next to the questions: Short notes beat memory every time.
Ask for it in writing: Request a copy of your pathology report, your staging summary, and your follow-up schedule for your own file.
Ask who to call: Get the name and number for routine questions, and a separate one for urgent problems and after hours.
Say when you do not understand: "I did not follow that, can you say it another way?" is the most useful sentence in the room.
Add your own questions: Nothing on this page beats the specific thing that has been keeping you awake.
Leave with a next step: Before you go, confirm what happens next, who arranges it, and when you should hear from someone.
What’s Next: Click the Penile Cancer Guide page to see all the guides about Penile cancer.