How to Ask About Prostate Cancer.

by

How to Ask About Prostate Cancer: A Definitive Guide

Facing a potential prostate cancer diagnosis, or supporting someone who is, can feel overwhelming. The sheer volume of information, coupled with the emotional weight, often leaves individuals unsure of where to begin their inquiries. This guide is designed to empower you with the knowledge and confidence to ask the right questions, ensuring you receive comprehensive, personalized information about prostate cancer at every stage – from initial concerns to treatment and beyond. We’ll delve into specific scenarios, offering actionable examples and practical advice to navigate these crucial conversations effectively.

Understanding the Landscape: Why Asking Matters

Before we dive into the specifics of what to ask, let’s understand why asking is so critical. Prostate cancer is a complex disease with varying prognoses and treatment options. A proactive approach to questioning allows you to:

  • Gain Clarity: Demystify medical jargon and understand your unique situation.

  • Make Informed Decisions: Participate actively in your care plan, rather than passively accepting recommendations.

  • Reduce Anxiety: Knowledge is power, and understanding can significantly alleviate stress.

  • Advocate for Yourself/Loved One: Ensure all concerns are addressed and that you receive the best possible care.

  • Explore All Options: Uncover alternatives you might not have known existed.

Remember, no question is too small or too foolish when it comes to your health. Your healthcare team is there to guide you, and your active participation is key to a successful journey.

Initial Concerns: When to Start Asking

The first questions often arise when a man experiences symptoms, receives an abnormal PSA (Prostate-Specific Antigen) test result, or has a family history of prostate cancer. This is the crucial stage where proactive inquiry can set the tone for future management.

Scenario 1: Abnormal PSA or DRE (Digital Rectal Exam) Result

An elevated PSA or an abnormal DRE doesn’t automatically mean cancer, but it does warrant further investigation.

Key Questions to Ask Your Primary Care Physician (PCP) or Urologist:

  • “My PSA level is [X]. What does this number typically indicate, and what are the common reasons for an elevated PSA besides cancer?”
    • Example: “My PSA is 5.2 ng/mL. Is that considered high for my age? What are other common reasons for this elevation besides cancer, like inflammation or an enlarged prostate?”
  • “What are the next steps you recommend based on this result?”
    • Example: “Given my PSA of 5.2, what are the immediate next steps? Do we repeat the test, or do we move directly to a referral?”
  • “Should I be referred to a urologist? If so, what can I expect from that visit?”
    • Example: “I’m concerned about this result. Should I see a urologist, and what kind of tests or discussions typically happen during that first consultation?”
  • “What are the potential risks or benefits of immediate further testing versus a ‘watch and wait’ approach?”
    • Example: “If we wait and retest my PSA in a few months, what are the potential downsides or upsides of that strategy versus undergoing a biopsy now?”
  • “Are there any lifestyle changes or medications that could influence my PSA levels?”
    • Example: “Could activities like intense exercise or certain medications affect my PSA, and is there anything I should adjust before a retest?”

Scenario 2: Experiencing Urinary Symptoms

While often indicative of benign prostatic hyperplasia (BPH), urinary symptoms can sometimes be associated with prostate cancer, especially in advanced stages.

Key Questions to Ask Your PCP or Urologist:

  • “I’ve been experiencing [describe symptoms, e.g., frequent urination, weak stream, difficulty starting urination]. Could these symptoms be related to my prostate, and specifically, to prostate cancer?”
    • Example: “For the past few months, I’ve noticed I’m getting up several times a night to urinate, and my stream seems weaker. Could this be a sign of prostate cancer, or is it more likely BPH?”
  • “What diagnostic tests are typically performed to investigate these symptoms?”
    • Example: “What tests would you recommend to figure out the cause of my urinary symptoms? Will I need a DRE or a PSA test?”
  • “If it’s not cancer, what are the most common causes of these symptoms, and what are the typical treatments?”
    • Example: “Assuming this isn’t cancer, what are the most common non-cancerous causes of these symptoms, and what treatment options would be available for them?”
  • “When should I be concerned enough about these symptoms to seek immediate medical attention?”
    • Example: “Are there any ‘red flag’ symptoms I should look out for that would indicate I need to come in right away?”

The Diagnostic Journey: Navigating Biopsies and Staging

If initial tests suggest a potential for prostate cancer, a biopsy is often the next step. This can be a particularly anxious time, and asking precise questions is vital for understanding the findings and implications.

Scenario 3: Before a Prostate Biopsy

Key Questions to Ask Your Urologist:

  • “What type of biopsy will be performed, and what is the exact procedure?”
    • Example: “Will this be a TRUS (Transrectal Ultrasound) guided biopsy, or will it be a transperineal biopsy? Can you walk me through the steps, including anesthesia?”
  • “What are the potential risks and side effects of the biopsy?”
    • Example: “What are the common side effects I should expect after the biopsy, like pain, bleeding, or infection? What are the rare but serious risks?”
  • “How long will it take to get the results, and who will explain them to me?”
    • Example: “When can I expect to hear about the biopsy results, and will you be the one explaining them to me, or will it be another member of your team?”
  • “What information will the biopsy provide, specifically regarding the Gleason score and cancer grade?”
    • Example: “Once the biopsy is done, what specific information will it give us? Will it provide a Gleason score, and if so, what does that score mean?”
  • “What should I do to prepare for the biopsy, and what should I avoid?”
    • Example: “Are there any dietary restrictions, medications I should stop, or specific instructions I need to follow before the biopsy?”

Scenario 4: Receiving Biopsy Results and Understanding Staging

This is perhaps the most critical conversation. Understanding the pathology report and the stage of the cancer is paramount.

Key Questions to Ask Your Urologist/Oncologist:

  • “Based on the biopsy, do I have prostate cancer? If so, what is the specific diagnosis?”
    • Example: “So, the biopsy confirms prostate cancer. What type of prostate cancer is it, and is it localized or has it spread?”
  • “What is my Gleason score, and what does it signify about the aggressiveness of the cancer?”
    • Example: “My report says my Gleason score is 7 (3+4). Can you explain what that means in terms of how aggressive my cancer is, and what the difference between 3+4 and 4+3 would be?”
  • “What is the clinical stage of my cancer? What information was used to determine this stage (e.g., PSA, DRE, imaging)?”
    • Example: “What stage is my prostate cancer, and how was that determined? Was it just based on my PSA and DRE, or were there imaging tests involved?”
  • “Are there any other prognostic factors we should consider, such as PSA density, or the number of positive cores?”
    • Example: “Beyond the Gleason score and stage, are there other factors like PSA density or the number of positive biopsy cores that influence the prognosis and treatment options?”
  • “Do I need further imaging (e.g., MRI, CT scan, bone scan, PSMA PET scan) to determine if the cancer has spread?”
    • Example: “Given my Gleason score and stage, do you recommend any further imaging, such as an MRI or a PET scan, to check if the cancer has spread outside the prostate?”
  • “What are my options if the biopsy is inconclusive or if there’s a discrepancy with other test results?”
    • Example: “If the biopsy wasn’t definitive, or if it doesn’t align with my high PSA, what would be the next steps?”

Treatment Decisions: Exploring All Avenues

Once prostate cancer is confirmed and staged, the conversation shifts to treatment options. This is where personalized medicine truly comes into play, as the “best” treatment depends on numerous factors, including cancer aggressiveness, patient age, overall health, and personal preferences.

Scenario 5: Discussing Treatment Options

Key Questions to Ask Your Urologist, Radiation Oncologist, and Medical Oncologist (if applicable):

  • “What are all the available treatment options for my specific type and stage of prostate cancer?”
    • Example: “Considering my Gleason 7 (3+4) and localized stage T2a cancer, what are all the viable treatment options on the table, including active surveillance, surgery, radiation, and others?”
  • “For each treatment option, what are the potential benefits, cure rates, and risks/side effects, both short-term and long-term?”
    • Example: “If I opt for radical prostatectomy, what’s the likelihood of being cured, and what are the specific risks like incontinence or erectile dysfunction, both immediately after and years down the line? How do these compare to radiation therapy?”
  • “What is your experience with each of these treatment options, and how many such procedures do you perform annually?”
    • Example: “Dr. [Surgeon’s Name], how many radical prostatectomies do you perform each year, and what are your personal outcomes regarding preserving continence and potency?”
  • “How will each treatment option impact my quality of life, including sexual function, urinary function, and bowel function?”
    • Example: “I’m particularly concerned about maintaining my quality of life. Can you elaborate on how each treatment option might affect my sexual function, my ability to control my bladder, and my bowel habits?”
  • “Are there any clinical trials available that might be suitable for me?”
    • Example: “Given my situation, are there any ongoing clinical trials that I might be eligible for that could offer a novel treatment approach?”
  • “What is the recovery process like for each treatment, and how long can I expect to be out of commission?”
    • Example: “If I undergo surgery, what’s the typical hospital stay, recovery time before I can return to work, and the general timeline for regaining strength?”
  • “What support services are available to help me manage the side effects or emotional impact of treatment?”
    • Example: “Are there support groups, physical therapists specializing in pelvic floor exercises, or counselors you recommend to help me cope with the physical and emotional challenges of treatment?”
  • “What are the implications if I choose not to pursue immediate treatment, and what is the ‘active surveillance’ option?”
    • Example: “If I decide to go with active surveillance, what does that truly entail in terms of monitoring, and what are the risks and benefits of delaying definitive treatment?”
  • “Can I get a second opinion, and if so, how do I go about arranging that?”
    • Example: “I’d like to get a second opinion on my treatment options. Is that something you recommend, and can you assist me with the referral process?”

Post-Treatment and Surveillance: Long-Term Management

The journey doesn’t end with treatment. Ongoing surveillance and management of potential side effects are crucial for long-term health and well-being.

Scenario 6: Post-Treatment Monitoring and Side Effects

Key Questions to Ask Your Urologist/Oncologist:

  • “What is the follow-up schedule after treatment, and what tests will be performed (e.g., PSA tests, DREs)?”
    • Example: “Now that my treatment is complete, what’s the recommended schedule for my follow-up appointments, and what specific tests will be done to monitor for recurrence?”
  • “What PSA level should I be aiming for, and what would indicate a potential recurrence?”
    • Example: “What’s considered a ‘normal’ or undetectable PSA level after my treatment, and what PSA increase or pattern would indicate a potential recurrence?”
  • “How will we manage any long-term side effects such as urinary incontinence, erectile dysfunction, or bowel issues?”
    • Example: “I’m still experiencing some urinary leakage/erectile dysfunction. What are the available treatments or therapies to manage these long-term side effects?”
  • “Are there any lifestyle changes (diet, exercise) that can help reduce the risk of recurrence or improve my overall health?”
    • Example: “Are there any specific dietary recommendations or exercise routines that could help me maintain my health and potentially reduce the risk of the cancer returning?”
  • “What are the signs and symptoms I should watch out for that might indicate a recurrence or new problems?”
    • Example: “Beyond my PSA, are there any physical symptoms or changes I should be aware of that could signal a recurrence or other issues I should report immediately?”
  • “What are the options if my cancer recurs after initial treatment?”
    • Example: “If, unfortunately, my cancer were to return, what would be the next steps and potential treatment options at that point?”

Advanced Prostate Cancer: Navigating Complexities

For some, prostate cancer may be diagnosed at an advanced stage or recur and spread after initial treatment. These situations require a different set of questions focused on systemic therapies and quality of life.

Scenario 7: Dealing with Advanced or Metastatic Prostate Cancer

Key Questions to Ask Your Medical Oncologist:

  • “What are the current treatment options for advanced/metastatic prostate cancer?”
    • Example: “Given that my prostate cancer has spread to [specific location, e.g., bones], what are the current standard treatment options available, such as hormone therapy, chemotherapy, or targeted therapies?”
  • “What are the goals of treatment in this stage (e.g., extending life, managing symptoms, improving quality of life)?”
    • Example: “What are the primary goals of treatment at this stage? Is it primarily focused on extending my life, managing my pain, or a combination of both?”
  • “What are the potential side effects of these systemic treatments, and how will they be managed?”
    • Example: “If I start hormone therapy, what are the common side effects I should anticipate, and what strategies or medications are available to manage them?”
  • “Are there any novel therapies or clinical trials specifically for advanced prostate cancer that I might be eligible for?”
    • Example: “Are there any cutting-edge treatments or new clinical trials that are showing promise for advanced prostate cancer that I could consider?”
  • “How will my pain and other symptoms be managed effectively?”
    • Example: “I’m experiencing significant bone pain. What are the options for effective pain management, and when should I consider palliative care?”
  • “What is the prognosis with these treatment options, and what factors influence it?”
    • Example: “Based on the available treatments, what is the typical prognosis for someone with my stage of advanced prostate cancer, and what individual factors might influence that?”
  • “What resources are available for emotional and practical support for me and my family?”
    • Example: “Where can I find support groups, counseling, or financial assistance programs specifically for patients and families dealing with advanced prostate cancer?”

Empowering Your Conversations: Beyond the Questions

Asking the right questions is just one part of effective communication. Consider these additional tips to maximize your interactions with your healthcare team:

  • Bring a Companion: A trusted friend or family member can act as an extra set of ears, take notes, and help you remember important details.

  • Take Notes: Jot down questions before your appointment and record the answers during the consultation. This helps solidify information and serves as a reference.

  • Be Honest and Open: Share all your symptoms, concerns, and preferences truthfully. Your doctors can only help you effectively if they have the complete picture.

  • Don’t Rush: If you don’t understand something, ask for clarification. Don’t leave an appointment feeling confused or uncertain. Ask your doctor to explain things in simpler terms or to draw diagrams if it helps.

  • Prioritize Your Concerns: If you have many questions, list them in order of importance. This ensures that your most pressing concerns are addressed first.

  • Request Information in Writing: Ask for written summaries of your diagnosis, treatment plan, and follow-up instructions.

  • Consider a Multi-Disciplinary Team: For complex cases, ensure your care involves a team of specialists (urologist, radiation oncologist, medical oncologist) who can collaborate on your treatment plan.

  • Educate Yourself (Carefully): While external resources can be helpful, always discuss information you find online with your healthcare provider to ensure its relevance and accuracy for your specific situation.

Conclusion

Navigating a prostate cancer diagnosis requires active participation and informed decision-making. By asking pertinent, detailed questions at every stage of the journey, you empower yourself to understand your condition, explore all viable options, and ultimately, advocate for the best possible care. This guide provides a robust framework, but remember that your individual circumstances are unique. Be proactive, be persistent, and always prioritize your well-being in these critical conversations.