Chapter Opening — Robert's Story
Robert, 63, a retired firefighter, sat in his urologist's office staring at the words on the paper: "Gleason 3+4, Grade Group 2, PSA 8.2." His urologist recommended surgery. His neighbor, a prostate cancer survivor, swore by radiation. His brother-in-law told him to "just watch it." A coworker sent him a link to a clinic in another country offering a treatment he had never heard of.
Robert felt paralyzed. Three opinions, three different directions. He did not know whom to trust or where to begin.
Then his urologist did something that changed everything. He said: "Robert, I want you to see a radiation oncologist and a medical oncologist before you decide anything. I also want you to know — this is not an emergency. You have time to make a thoughtful decision."
Six weeks later, after seeing three specialists, getting a second pathology review, and attending a support group meeting, Robert made his choice with confidence. Not because one option was clearly "the best," but because he understood the trade-offs and chose the path that aligned with his values and priorities.
This chapter is about becoming Robert — informed, empowered, and in control of your journey.
Part 1: Your Cancer Care Team — Who Does What?
One of the first things you will notice after a prostate cancer diagnosis is that many different doctors and healthcare professionals become involved in your care. This can feel overwhelming, but each person plays a specific role. Understanding who they are and what they do will help you feel more in control.
Urologist
A urologist is usually the first specialist you see. Urologists are surgeons who specialize in the urinary tract and male reproductive system. They often perform your biopsy and are the ones who deliver the diagnosis. Some urologists specialize specifically in cancer (urologic oncologists), and these specialists typically perform radical prostatectomy (surgical removal of the prostate). Not all urologists perform prostate surgery — some focus on general urology (kidney stones, urinary problems, etc.), so it is important to know whether your urologist is also your surgeon or whether they will refer you to a surgical specialist.
Radiation Oncologist
A radiation oncologist is a doctor who specializes in treating cancer with radiation. This is a completely different specialty from surgery. Radiation oncologists design and oversee your radiation treatment plan. They work with a team that includes:
- Radiation therapists — the professionals who operate the radiation machines and position you for daily treatments
- Medical dosimetrists — specialists who calculate the precise radiation doses and create the treatment plan under the doctor's guidance
- Medical physicists — scientists who ensure the radiation equipment is working correctly and that the doses are accurate and safe
You may not meet all of these team members, but they are all working behind the scenes to ensure your treatment is safe and precise.
Medical Oncologist
A medical oncologist specializes in treating cancer with medications — including hormone therapy, chemotherapy, immunotherapy, and targeted therapies. For localized prostate cancer, you may not need a medical oncologist right away. However, if your cancer is more advanced, has spread, or requires systemic (whole-body) treatment, the medical oncologist becomes a central member of your team.
Pathologist
The pathologist is the doctor you will probably never meet in person, but who plays one of the most important roles in your care. Pathologists examine your biopsy tissue under a microscope and determine the Gleason score and Grade Group — the numbers that define how aggressive your cancer is. As we discussed in Chapter 4, pathology interpretation can be subjective, and second opinions on pathology can lead to meaningful changes in about 25–30% of cases.¹ ²
Radiologist
Radiologists are doctors who specialize in reading imaging studies — MRI, CT scans, PET scans, bone scans, and ultrasound. There are two types you might encounter:
- Diagnostic radiologists — they read and interpret your scans
- Interventional radiologists — they perform procedures guided by imaging, such as placing fiducial markers in the prostate before radiation therapy, or performing biopsies of suspicious areas
Nurse Navigator / Oncology Nurse
Many cancer centers have nurse navigators — specialized nurses who help guide you through the healthcare system. They can help schedule appointments, coordinate between specialists, explain test results, and serve as your primary point of contact when you have questions. Oncology nurses also manage your care during treatment, monitor side effects, and provide education.
Other Important Team Members
- Dietitian / Nutritionist — helps with eating well during and after treatment, managing weight, and addressing treatment-related dietary issues
- Physical therapist / Exercise physiologist — helps with pelvic floor exercises (especially important before and after surgery), general fitness, and managing fatigue
- Social worker — provides emotional support, connects you with community resources, and helps with practical issues like transportation and financial concerns
- Psychologist / Psychiatrist — provides professional mental health support for anxiety, depression, or adjustment difficulties
- Palliative care team — focuses on quality of life, symptom management, and comfort. Palliative care is NOT the same as hospice — it can and should be involved at any stage of cancer, even when the goal is cure
- Pharmacist — increasingly important as prostate cancer treatments become more complex, pharmacists help manage drug interactions, side effects, and medication schedules
- Financial counselor / Insurance navigator — helps you understand your insurance coverage, out-of-pocket costs, and financial assistance programs
Key Point: You are the most important member of this team. Every other person on this list works for you. Never hesitate to ask questions, express concerns, or request changes.
Part 2: How to Choose Your Doctor
Choosing the right doctor is one of the most important decisions you will make. Here are the qualities to look for — what we call the 4 C's:
1. Compassion
Does the doctor listen to you? Do they treat you as a person, not just a diagnosis? Do they acknowledge your fears and concerns? A doctor who rushes through appointments, dismisses your questions, or makes you feel like "just another patient" may not be the right fit — no matter how skilled they are.
2. Competence
This includes training, experience, and outcomes. For surgeons, volume matters. Research consistently shows that surgeons and hospitals that perform more prostate cancer surgeries tend to have better outcomes — fewer complications, lower rates of positive surgical margins, better urinary and sexual function recovery, and even better cancer control.³ ⁴ ⁵ A systematic review in European Urology found that outcomes improve significantly at hospitals performing more than approximately 86 radical prostatectomies per year.³ For robotic surgery specifically, improvements in outcomes were seen up to about 100 procedures per year, beyond which there was marginal additional benefit.⁶ The NCCN Guidelines also state that high-volume surgeons in high-volume centers generally provide better outcomes.⁷
The same principle applies to radiation oncologists — experience with prostate cancer specifically, familiarity with the latest techniques, and a track record of good outcomes all matter.
It is perfectly appropriate to ask your doctor:
- "How many of these procedures do you perform each year?"
- "What are your complication rates?"
- "What are your outcomes for cancer control?"
A confident, competent doctor will welcome these questions.
3. Communication
Can the doctor explain complex medical information in a way you understand? Do they use plain language or hide behind jargon? Do they encourage questions? Do they give you written materials or resources to review at home?
Good communication also means the doctor tells you about ALL your options — not just the one they provide. A surgeon should mention radiation as an alternative. A radiation oncologist should mention surgery. If a doctor only tells you about their own treatment, that is a red flag.
4. Commitment to Research
Doctors who are involved in research tend to be more up-to-date on the latest advances. They may also offer you access to clinical trials — which can provide cutting-edge treatments not yet widely available. This does not mean your doctor must be at a university hospital, but they should be aware of current evidence and guidelines.
Academic Centers vs. Community Centers
Both have advantages:
- Academic / university centers often have the latest technology, access to clinical trials, multidisciplinary clinics, and subspecialists. However, they may have longer wait times, be farther from home, and feel less personal.
- Community centers may offer more convenience, shorter wait times, and a more personal relationship with your doctor. Many community oncologists provide excellent, guideline-concordant care.
The best approach for many patients is a combination — get your initial evaluation and second opinion at an academic center, then receive treatment closer to home if appropriate.
Trust Your Gut
Beyond credentials and statistics, the doctor-patient relationship matters. You will be working with this person for months or years. If something feels wrong — if you feel rushed, dismissed, or uncomfortable — it is okay to look elsewhere. Your comfort and trust in your doctor directly affect your experience and outcomes.
Part 3: Second Opinions — Your Right and Your Responsibility
Why Second Opinions Are Not an Insult
Many patients worry that seeking a second opinion will offend their doctor. The truth is the opposite: good doctors welcome second opinions. They understand that prostate cancer treatment decisions are complex, that multiple valid options often exist, and that patients deserve to hear different perspectives. If a doctor discourages you from getting a second opinion, that itself is a reason to get one.
When to Seek a Second Opinion
A second opinion is always reasonable, but it is especially important when:
- You have intermediate-risk disease, where multiple treatment options (active surveillance, surgery, radiation) may all be appropriate
- Only one treatment option was presented to you
- Surgery was recommended without seeing a radiation oncologist (or vice versa)
- Your pathology results seem uncertain or borderline (for example, Gleason 3+4 vs. 4+3 — a distinction that changes your risk group)
- You have a rare or aggressive variant of prostate cancer
- You are considering active surveillance and want confirmation that it is safe for your specific situation
- Something just does not feel right
Pathology Second Opinions
This deserves special emphasis. As discussed in Chapter 4, Gleason scoring involves a pathologist's subjective interpretation of tissue patterns. Studies show that when prostate biopsy slides are reviewed by a second expert pathologist, disagreements occur in approximately 26% of cases, and in about 7–8% of cases, the change is significant enough to alter treatment decisions — for example, changing a patient from a candidate for active surveillance to one who needs definitive treatment, or vice versa.² Another study found that pathology changes at a multidisciplinary center led to disease reclassification in 9% of patients, and overall, 28.7% of patients had a change in their NCCN risk classification, N stage, or M stage after comprehensive re-evaluation.⁸
A study specifically examining the impact on radiation therapy management found that secondary pathology review is critically important for accurate risk designation and treatment recommendations, particularly for patients with high-risk disease.¹
How to Get a Second Opinion
- Insurance: Most insurance plans cover second opinions. Some plans actually require a second opinion before approving surgery. Call your insurance company to confirm.
- Remote / virtual second opinions: Many major cancer centers (MD Anderson, Memorial Sloan Kettering, Johns Hopkins, Mayo Clinic, Cleveland Clinic, and others) offer virtual second opinion programs. You can send your records and receive an expert review without traveling.
- Pathology second opinion: Your doctor can send your biopsy slides to an expert genitourinary pathologist at a major center. This is a simple process and can be done without an in-person visit.
- Imaging second opinion: Similarly, your MRI or PET scan images can be sent electronically for re-reading by a specialist radiologist.
What to Bring to a Second Opinion
- All pathology reports (and request that slides be sent ahead of time)
- All imaging studies on CD, USB, or uploaded to the center's portal
- PSA history (all values with dates)
- A list of your other medical conditions and medications
- A written list of your questions
- A family member or friend to take notes
How to Handle Conflicting Opinions
It is common for different doctors to recommend different treatments. This does not necessarily mean someone is wrong. For many prostate cancers — especially intermediate-risk disease — surgery, radiation, and sometimes even active surveillance can all be reasonable options with similar long-term cancer control rates. The differences often come down to side effect profiles, recovery time, and how each option aligns with your personal priorities.
When opinions conflict:
- Ask each doctor: "Why do you recommend this approach over the alternatives?"
- Ask: "What would you recommend if I were your father/brother?"
- Consider a multidisciplinary clinic (see next section) where you can hear from all specialists in one visit
- Remember that the final decision is yours
The "Surgeon Recommends Surgery" Phenomenon
It is a well-known pattern in medicine: surgeons tend to recommend surgery, and radiation oncologists tend to recommend radiation. This is not because doctors are dishonest — it is because each specialist knows their own treatment best, has the most experience with it, and has seen its successes firsthand. A population-based study found that among patients recommended radiation as the only option by their community urologist, only 26% actually received it — suggesting that many patients were not fully informed about radiation as an option.⁸ When patients were evaluated at a multidisciplinary conference, concordance between the conference recommendation and the treatment actually received was 92%, compared to only 65% for community recommendations alone.⁸
This is precisely why seeing more than one type of specialist is so important.
Part 4: The Multidisciplinary Clinic
What Is a Multidisciplinary Clinic?
A multidisciplinary clinic (MDC) is a setting where you see multiple specialists — typically a urologist, radiation oncologist, and sometimes a medical oncologist — in a single visit or on the same day. Instead of scheduling three separate appointments weeks apart, you get all perspectives in one coordinated visit.
Research shows that multidisciplinary team discussions can alter treatment plans in 25–50% of prostate cancer cases.⁹ At one major center, community recommendations differed from multidisciplinary recommendations in 22% of patients.⁸ MDT-based decision-making increases the likelihood of treatment according to guidelines and provides the best expert opinion based on interdisciplinary case evaluations.⁹
A recent population-based study from Ontario, Canada, found that despite the recognized importance of multidisciplinary management, significant gaps remain — only 41% of high-risk patients had radiation oncology consultations before treatment, and multidisciplinary care involving all three specialties (urology, radiation oncology, and medical oncology) was uncommon, occurring in only about 40% of high-risk cases.¹⁰
Tumor Boards
Even if you do not attend a formal multidisciplinary clinic, your case may be discussed at a tumor board — a regular meeting where doctors from multiple specialties review complex cases together. Tumor boards typically include urologists, radiation oncologists, medical oncologists, pathologists, and radiologists. They review your biopsy, imaging, and clinical information and arrive at a consensus recommendation.
You can ask your doctor: "Will my case be discussed at a tumor board?" If not, you can request it.
If Your Center Does Not Have a Multidisciplinary Clinic
Not every hospital has a formal MDC. If yours does not, you can approximate the experience by:
- Scheduling appointments with a urologist AND a radiation oncologist (and a medical oncologist if your disease is advanced)
- Asking each doctor to communicate with the others about your case
- Seeking a one-time consultation at a larger center that offers multidisciplinary evaluation
- Requesting a tumor board discussion of your case
The Value of a "Quarterback"
With multiple doctors involved, it helps to have one physician who coordinates your overall care — your "quarterback." This might be your urologist, your radiation oncologist, or your primary care doctor. This person keeps track of the big picture, ensures nothing falls through the cracks, and serves as your main point of contact.
Part 5: The Big Picture — Treatment Categories at a Glance
Before diving into the detailed treatment chapters that follow, here is a brief overview of the main treatment approaches for prostate cancer. Think of this as a map — the detailed directions come in the next chapters.
Active Surveillance (Chapter 8)
Active surveillance means closely monitoring your cancer with regular PSA tests, imaging (usually MRI), and periodic biopsies — but not treating it right away. The goal is to avoid or delay treatment (and its side effects) for cancers that are growing slowly and may never cause harm. If the cancer shows signs of becoming more aggressive, treatment is started with the intent to cure. Active surveillance is the preferred approach for low-risk prostate cancer and is an option for some favorable intermediate-risk cancers.¹¹ ¹²
Active surveillance is NOT the same as "doing nothing." It is an active, structured monitoring program.
Surgery — Radical Prostatectomy (Chapter 9)
Radical prostatectomy means surgically removing the entire prostate gland, along with the seminal vesicles and sometimes nearby lymph nodes. It can be performed as open surgery, laparoscopic surgery, or (most commonly today) robot-assisted surgery. Surgery offers the advantage of removing the cancer entirely and providing a complete pathology specimen for analysis. The main side effects are urinary incontinence and erectile dysfunction, though both often improve over time.³ ⁷
Radiation Therapy (Chapter 10)
Radiation therapy uses high-energy beams to kill cancer cells. It can be delivered from outside the body (external beam radiation therapy, or EBRT) or from radioactive seeds placed directly inside the prostate (brachytherapy). Modern radiation techniques are highly precise and can be delivered in various schedules — from conventional daily treatments over several weeks to ultra-short courses of just five treatments (SBRT). Radiation therapy is an alternative to surgery with similar long-term cancer control rates for most risk groups. The main side effects involve urinary, bowel, and sexual function.
Focal Therapies (Chapter 11)
Focal therapies treat only the part of the prostate that contains cancer, rather than the whole gland. These include cryotherapy (freezing), HIFU (high-intensity focused ultrasound), and other emerging technologies. Focal therapies aim to reduce side effects by preserving healthy tissue. They are still considered investigational for most patients and are best suited for carefully selected cases.
Systemic Therapy (Chapter 12)
Systemic therapy refers to treatments that work throughout the entire body. These include:
- Hormone therapy (androgen deprivation therapy, or ADT) — reduces testosterone levels to slow cancer growth. Often used in combination with radiation for intermediate- and high-risk disease, and as a primary treatment for advanced disease.
- Chemotherapy — drugs that kill rapidly dividing cells. Used mainly for advanced or castration-resistant prostate cancer.
- Immunotherapy — treatments that help your immune system fight cancer (e.g., sipuleucel-T, checkpoint inhibitors).
- Targeted therapy — drugs that target specific genetic changes in cancer cells (e.g., PARP inhibitors for patients with BRCA mutations).
- Radiopharmaceuticals — radioactive drugs that target cancer cells throughout the body (e.g., Lutetium-177 PSMA, Radium-223).
How Treatment Choice Depends on Multiple Factors
No single factor determines the best treatment. The decision depends on:
- Your risk group — very low, low, favorable intermediate, unfavorable intermediate, high, or very high
- Your life expectancy — based on age and overall health, not just age alone
- Your other medical conditions (comorbidities) — heart disease, diabetes, prior surgeries, etc.
- Your baseline function — how well your urinary, sexual, and bowel function are working BEFORE treatment
- Your personal preferences and values — what matters most to you in terms of quality of life
Part 6: Baseline Function — Why It Matters Before You Treat
This is one of the most important — and most overlooked — aspects of prostate cancer treatment planning.
Why Measure Baseline Function?
Every treatment for prostate cancer can affect three key areas of function:
- Urinary function — how well you control your urine, how often you urinate, whether you have leakage
- Sexual function — your ability to achieve and maintain erections, your interest in sex, your ability to reach orgasm
- Bowel function — frequency, urgency, bleeding, or discomfort with bowel movements
Here is the critical point: your function AFTER treatment is strongly related to your function BEFORE treatment.¹¹ A man who has excellent erections before treatment is more likely to recover erections after treatment than a man who already has erectile difficulties. A man who already has urinary problems may experience more urinary side effects.
This is why the NCCN Guidelines specifically recommend measuring baseline function using a standardized questionnaire — preferably the EPIC-26 — before any treatment decision is made.¹¹
What Is EPIC-26?
The EPIC-26 (Expanded Prostate Cancer Index Composite — 26 questions) is a validated questionnaire that measures your urinary, sexual, bowel, and hormonal function. It takes about 10 minutes to complete. Your scores provide a baseline that can be compared to your scores after treatment, giving you and your doctor an objective measure of how treatment has affected your quality of life.
We provided a sample EPIC-26 in Chapter 2. If you have not completed one yet, ask your doctor about it before starting treatment.
Other Important Questionnaires
- IPSS / AUA Symptom Score — measures urinary symptoms (7 questions). Useful for tracking urinary function over time.
- SHIM / IIEF-5 — measures erectile function (5 questions). Provides a baseline score for sexual function.
Prehabilitation: Preparing Your Body Before Treatment
Just as athletes train before a competition, you can prepare your body before cancer treatment:
- Pelvic floor exercises (Kegels) — starting these BEFORE surgery can significantly improve urinary recovery afterward. A physical therapist who specializes in pelvic floor rehabilitation can teach you the correct technique.
- Cardiovascular fitness — improving your overall fitness before treatment helps with recovery. Even moderate walking helps.
- Nutrition optimization — eating well before treatment gives your body the resources it needs to heal.
- Mental preparation — understanding what to expect reduces anxiety and improves coping.
Part 7: Shared Decision-Making — Your Voice Matters
What Is Shared Decision-Making?
Shared decision-making (SDM) is a process where you and your doctor make treatment decisions together. It is not the doctor telling you what to do, and it is not you making the decision alone. It is a partnership.
The AUA/ASTRO Guidelines state that the selection of a management strategy for clinically localized prostate cancer is preference-sensitive and very often based on patients' interpretation of the balance between treatment-specific risks and benefits.¹² Randomized trials of SDM versus routine care have shown that patients engaged in SDM are more knowledgeable, have more realistic expectations, participate more actively in care, and more frequently arrive at decisions aligned with their personal preferences.¹²
The NCCN Guidelines emphasize that shared decision-making should include an explanation of the potential benefits and harms of each option, the likelihood of cure, recurrence, disease progression, and disease-specific mortality, as well as the predicted impact on quality of life.¹¹
What Should Your Doctor Discuss With You?
A thorough shared decision-making conversation should cover:
- The nature of your cancer — risk group, what it means, how aggressive it is
- All reasonable treatment options — not just one
- The likelihood of cure with each option
- The risk of recurrence with each option
- Side effects of each option — specifically urinary, sexual, and bowel effects
- How side effects might change over time — some are temporary, some are permanent
- Your life expectancy — because competing health risks matter
- Your personal priorities — what matters most to you
Bringing Someone With You
One of the most practical pieces of advice: bring a partner, family member, or trusted friend to your appointments. When you are anxious (and you will be), it is hard to absorb everything the doctor says. A second person can:
- Take notes
- Ask questions you might forget
- Help you remember what was said afterward
- Provide emotional support
Recording Your Visit
Many patients find it helpful to record their doctor visits (audio recording on a phone). Most doctors are comfortable with this — just ask permission first. Having a recording allows you to review the information at home, share it with family members who could not attend, and catch details you may have missed.
It Is Okay to Take Time
For most localized prostate cancer, this is NOT an emergency. You typically have weeks to months to make a thoughtful decision. Studies show that reasonable delays (4–6 weeks, sometimes longer) between diagnosis and treatment do not worsen outcomes for localized disease. Rushing into a decision you are not comfortable with helps no one.
That said, do not delay indefinitely. Set a reasonable timeline — perhaps 4 to 8 weeks — to gather information, see specialists, get second opinions, and make your decision.
Decision Aids and Worksheets
Several tools exist to help you organize your thoughts and compare options:
- Written decision aids from organizations like the AUA, NCCN, and Prostate Cancer Foundation
- Online tools and calculators (see Chapter 6)
- The worksheets in Appendix D of this book
Part 8: Clinical Trials — Should You Consider One?
What Is a Clinical Trial?
A clinical trial is a carefully designed research study that tests new treatments, new combinations of treatments, or new ways of using existing treatments. Clinical trials are how every treatment you have ever heard of was proven to work — including surgery, radiation, and every medication used in prostate cancer today.
The Phases of Clinical Trials
Clinical trials proceed through a series of phases, each designed to answer different questions:¹³
- Phase I — Tests a new treatment in a small group of people (usually 20–80) for the first time. The main goal is to determine safety, find the right dose, and identify side effects. These trials are the earliest stage of testing in humans.
- Phase II — Tests the treatment in a larger group (up to a few hundred people) to see if it works and to further evaluate safety. These trials begin to assess effectiveness but are usually not large enough to provide definitive answers.
- Phase III — Tests the treatment in a large group (often hundreds to thousands of people) by comparing it to the current standard treatment. This is the phase that determines whether a new treatment is better than, equal to, or worse than what is currently available. Phase III trials are the gold standard for proving a treatment works.
- Phase IV — Studies done after a treatment has been approved and is in use. These trials monitor long-term safety and effectiveness in the general population.
Common Myths About Clinical Trials
Myth: "I will be a guinea pig."
Fact: Clinical trial participants are among the most closely monitored patients in medicine. You receive more frequent check-ups, more testing, and more attention than patients receiving standard care. Strict ethical rules protect your safety, and you can leave a trial at any time.
Myth: "I might get a sugar pill (placebo) instead of real treatment."
Fact: In cancer clinical trials, you almost always receive at least the current standard of care. The experimental group typically receives standard care PLUS the new treatment. Pure placebo-only arms (where you get no treatment at all) are extremely rare in cancer trials and would be unethical when effective treatments exist.
Myth: "Clinical trials are only for people who have run out of options."
Fact: Many clinical trials are designed for newly diagnosed patients. Some of the most important prostate cancer trials enrolled men at the time of initial diagnosis. Participating early can give you access to promising treatments before they are widely available.
Myth: "If I join a trial, I cannot leave."
Fact: You can withdraw from a clinical trial at any time, for any reason, without penalty. Your regular care will continue.
How to Find Clinical Trials
- Ask your doctor — they may know of trials at your center or nearby
- ClinicalTrials.gov — the largest database of clinical trials worldwide (free, searchable)
- NCCN — provides trial listings organized by cancer type
- Prostate Cancer Foundation (PCF) — offers a clinical trial finder tool
- National Cancer Institute (NCI) — maintains a searchable trial database
Questions to Ask About a Clinical Trial
- What is the purpose of this trial?
- What phase is it?
- What treatment will I receive?
- How does this compare to standard treatment?
- What are the possible risks and side effects?
- How will my safety be monitored?
- Will I have extra costs?
- How long will the trial last?
- Can I leave the trial if I want to?
Part 9: Navigating Conflicting Information
The Internet: Powerful Tool, Dangerous Trap
After a cancer diagnosis, it is natural to search the internet for information. This can be empowering — research shows that the majority of cancer patients use the internet to learn about their diagnosis and treatment, and many report that online research helps them feel more prepared for discussions with their doctors.¹⁴
But the internet is also full of misinformation. A systematic review and meta-analysis of 75 studies encompassing nearly 300,000 posts found that approximately 27% of cancer-related posts on social media contained misinformation, 21% contained potentially harmful information, and 12% contained commercial bias.¹⁵ Another study found that among the most popular social media articles on the four most common cancers, 32.5% contained misinformation and 30.5% contained harmful information — and articles with misinformation received significantly more engagement (likes, shares) than factual articles.¹⁶ Research confirms that inaccurate and misleading health-related posts on social media often get more views and engagement from users compared with accurate information.¹⁷
How to Evaluate Online Information
Use this simple checklist — think of it as a "traffic light" system:
🟢 GREEN LIGHT (Trustworthy Sources)
- Major cancer organizations: American Cancer Society (ACS), National Cancer Institute (NCI), Prostate Cancer Foundation (PCF), NCCN
- Academic medical center websites (Mayo Clinic, Johns Hopkins, MD Anderson, Memorial Sloan Kettering, Cleveland Clinic)
- Government health agencies (NIH, CDC)
- Peer-reviewed medical journals (though these are written for doctors)
- Your own doctor's recommendations
🟡 YELLOW LIGHT (Use With Caution)
- General health websites (WebMD, Healthline) — often accurate but may lack nuance
- Patient forums and support groups — valuable for emotional support but medical advice varies widely
- News articles about cancer research — often oversimplify or sensationalize findings
🔴 RED LIGHT (Be Very Skeptical)
- Websites selling products or treatments
- Sites that claim to have a "cure" that doctors do not want you to know about
- Personal blogs or social media posts making medical claims without references
- Any source that tells you to avoid proven treatments in favor of unproven alternatives
- Sites that use fear, conspiracy theories, or emotional manipulation
When Friends and Family Share Stories
After your diagnosis, well-meaning friends and family will share stories: "My uncle had prostate cancer and he just took supplements and he is fine." "My neighbor had surgery and he has been in diapers ever since."
These stories are almost never relevant to your specific situation. Every prostate cancer is different. Every patient is different. What happened to someone else — even a close relative — may have nothing to do with what will happen to you. Listen politely, but make your decisions based on your own medical team's advice and the evidence.
Discuss What You Find Online With Your Doctor
Your doctor would rather you bring questions from the internet than silently worry about something you read. If you find something concerning or confusing online, bring it to your next appointment. A good doctor will take the time to address it.
Part 10: Support Groups and Resources
The Value of Peer Support
A cancer diagnosis affects not just your body but your mind, your relationships, and your daily life. Connecting with other men who have been through the same experience can be profoundly helpful. Support groups offer:
- A safe space to express fears and frustrations
- Practical advice from people who have "been there"
- Reduced feelings of isolation
- Information about treatments and side effects from a patient perspective
- Hope — seeing men who are living well after treatment
National Organizations
- Prostate Cancer Foundation (PCF) — pcf.org — the world's leading philanthropic organization funding prostate cancer research. Offers patient guides, clinical trial finder, and educational resources.
- ZERO — The End of Prostate Cancer — zerocancer.org — provides support, education, and advocacy. Offers a free helpline (1-844-244-1309) and online support groups.
- Us TOO International — ustoo.org — one of the oldest prostate cancer support organizations. Offers local support groups across the country and online resources.
- Man to Man (American Cancer Society) — a support group program through the ACS that connects prostate cancer patients.
- American Cancer Society (ACS) — cancer.org — comprehensive cancer information, support programs, and a 24/7 helpline (1-800-227-2345).
- National Cancer Institute (NCI) — cancer.gov — the US government's primary agency for cancer research and information.
Online Communities — Benefits and Cautions
Online forums and social media groups can provide 24/7 access to peer support. However, be cautious:
- Medical advice in online forums is often inaccurate or outdated
- Some forums are dominated by negative experiences (people who are doing well are less likely to post)
- Commercial interests sometimes infiltrate patient communities
- Use online communities for emotional support, but verify any medical information with your doctor
Caregiver and Family Support
Cancer does not just happen to the patient — it happens to the whole family. Partners, children, and close friends are also affected. Resources exist specifically for caregivers:
- CancerCare (cancercare.org) — free counseling, support groups, and financial assistance for patients and caregivers
- Caregiver Action Network (caregiveraction.org) — resources specifically for family caregivers
- Family Caregiver Alliance (caregiver.org) — education, support, and advocacy
- Well Spouse Association (wellspouse.org) — support for partners of people with chronic illness
Part 11: Questions to Ask Your Doctor
The following questions are organized by situation. You do not need to ask all of them — choose the ones most relevant to you. Consider printing this list and bringing it to your appointments.
At Diagnosis
- What is my exact diagnosis — Grade Group, Gleason score, PSA, and clinical stage?
- What is my NCCN risk group?
- Do I need any additional tests (MRI, PET scan, bone scan, genomic testing)?
- Should I get a second opinion on my pathology?
- How much time do I have to make a treatment decision?
About Treatment Options
- What are ALL my treatment options — including active surveillance?
- What do you recommend, and why?
- What are the chances of curing my cancer with each option?
- What are the main side effects of each option?
- How will each option affect my urinary function? Sexual function? Bowel function?
- How long will treatment take?
- How long is the recovery period?
- Will I need additional treatments after the primary treatment (e.g., hormone therapy with radiation, radiation after surgery)?
About Your Doctor
- How many of these procedures do you perform each year?
- What are your personal outcomes and complication rates?
- Are you board-certified in your specialty?
- Is there a multidisciplinary clinic where I can hear from multiple specialists?
About Practical Matters
- Will my insurance cover this treatment?
- What will my out-of-pocket costs be?
- Are there clinical trials I should consider?
- How often will I need follow-up visits after treatment?
- Who should I call if I have problems or questions between appointments?
- Can you recommend a support group?
Part 12: Myth vs. Fact
Myth: "Surgery is always better than radiation."
Fact: For most localized prostate cancers, surgery and radiation provide similar long-term cancer control. The ProtecT trial, which randomized men to surgery, radiation, or active monitoring, found no significant difference in prostate cancer-specific mortality at 15 years of follow-up.¹⁸ The choice between them depends on side effect profiles, your anatomy, your baseline function, and your personal preferences — not on one being universally "better."
Myth: "If you have cancer, you need to treat it immediately."
Fact: Most localized prostate cancers are not emergencies. For low-risk and many favorable intermediate-risk cancers, active surveillance — carefully monitoring without immediate treatment — is the recommended approach. Even when treatment is chosen, taking 4–8 weeks to gather information, see specialists, and make a thoughtful decision does not worsen outcomes.
Myth: "Radiation makes you radioactive and dangerous to be around."
Fact: External beam radiation therapy does not make you radioactive. You can safely be around family, children, and pregnant women during and after treatment. With brachytherapy (radioactive seeds), there are minor temporary precautions, but the radiation levels are very low and the seeds are permanently implanted inside the prostate.
Myth: "Robotic surgery is always better than open surgery."
Fact: The robot is a tool — what matters most is the skill and experience of the surgeon using it. A highly experienced open surgeon may achieve better outcomes than an inexperienced robotic surgeon. That said, robotic surgery has become the dominant approach because it generally offers less blood loss, shorter hospital stays, and faster recovery.³ ⁷
Myth: "Only old men get prostate cancer."
Fact: While prostate cancer is more common in older men, it can occur in men in their 40s and 50s. Younger men with prostate cancer may have more aggressive disease and should be evaluated carefully. Age alone should not determine treatment — overall health and life expectancy matter more.
Myth: "Alternative treatments can cure prostate cancer without surgery or radiation."
Fact: No alternative therapy has been proven to cure prostate cancer. Some complementary approaches (exercise, healthy diet, stress reduction) can improve quality of life and may complement standard treatment, but they should never replace proven therapies. Delaying or refusing evidence-based treatment in favor of unproven alternatives can allow cancer to progress to an incurable stage. (See Chapter 14 for a detailed discussion.)
Part 13: Key Takeaways
- Your cancer care team includes many specialists — urologist, radiation oncologist, medical oncologist, pathologist, radiologist, nurses, and support staff. You are the most important member of this team.
- Choose your doctor based on the 4 C's: Compassion, Competence, Communication, and Commitment to research. For surgeons, volume and experience matter significantly.
- Second opinions are your right and are encouraged by good doctors. Pathology second opinions are especially important, as Gleason scoring is subjective and changes occur in approximately 25–30% of cases.
- Multidisciplinary clinics where you see multiple specialists in one visit lead to better-informed decisions and can change treatment plans in 25–50% of cases.
- Measure your baseline function (urinary, sexual, bowel) with a validated questionnaire like EPIC-26 before any treatment decision.
- Shared decision-making means you and your doctor decide together, based on evidence AND your personal values and preferences.
- Clinical trials are not a last resort — they offer access to cutting-edge treatments and are available at every stage of disease.
- Be cautious with online information — approximately 27% of cancer-related social media posts contain misinformation. Stick to trusted sources and discuss what you find with your doctor.
Support Resources
- NCCN Patient Guidelines — Prostate Cancer: www.nccn.org/patients
- Prostate Cancer Foundation: www.pcf.org
- ZERO — The End of Prostate Cancer: www.zerocancer.org (Helpline: 1-844-244-1309)
- Us TOO International: www.ustoo.org
- American Cancer Society: www.cancer.org (24/7 Helpline: 1-800-227-2345)
- National Cancer Institute: www.cancer.gov
- ClinicalTrials.gov: www.clinicaltrials.gov
- CancerCare: www.cancercare.org (free counseling and support)
- Caregiver Action Network: www.caregiveraction.org
References
- 1. Wayment RO, Liang-Cheng L, Teng Y, et al. Impact of secondary pathology review on radiation therapy management of prostate cancer. Pract Radiat Oncol. 2024;14(5):e413–e419.
- 2. Epstein JI, Feng Z, Trock BJ, Pierorazio PM. Upgrading and downgrading of prostate cancer from biopsy to radical prostatectomy: incidence and predictive factors using the modified Gleason grading system and factoring in tertiary grades. Eur Urol. 2012;61(5):1019–1024.
- 3. Bravi CA, Paciotti M, Sarchi L, et al. Robot-assisted radical prostatectomy: a systematic review and meta-analysis of comparative studies. Eur Urol. 2024;85(2):121–138.
- 4. Trinh QD, Bjartell A, Freedland SJ, et al. A systematic review of the volume-outcome relationship for radical prostatectomy. Eur Urol. 2013;64(5):786–798.
- 5. Wilt TJ, Shamliyan TA, Taylor BC, et al. Association between hospital and surgeon radical prostatectomy volume and patient outcomes: a systematic review. J Urol. 2008;180(3):820–828.
- 6. Leow JJ, Chang SL, Meyer CP, et al. Robot-assisted versus open radical prostatectomy: a contemporary analysis of an all-payer discharge database. Eur Urol. 2016;70(5):837–845.
- 7. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Prostate Cancer. Version 5.2026. PROS-J.
- 8. Korman H, Lanni T Jr, Shah C, et al. Impact of a prostate multidisciplinary clinic program on patient treatment decisions and on adherence to NCCN guidelines: the William Beaumont Hospital experience. Am J Clin Oncol. 2013;36(2):121–125.
- 9. Pillay B, Wootten AC, Crowe H, et al. The impact of multidisciplinary team meetings on patient assessment, management and outcomes in oncology settings: a systematic review of the literature. Cancer Treat Rev. 2016;42:56–72.
- 10. Hanna TP, Nguyen P, Gao Y, et al. Multidisciplinary management of prostate cancer: a population-based study. JAMA Netw Open. 2025;8(5):e2513413.
- 11. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Prostate Cancer. Version 5.2026. PROS-F.
- 12. Eastham JA, Auffenberg GB, Barocas DA, et al. Clinically localized prostate cancer: AUA/ASTRO guideline, part I. J Urol. 2022;208(1):10–18.
- 13. National Institutes of Health. Learn about clinical studies. ClinicalTrials.gov. Accessed 2026.
- 14. Castleton K, Fong T, Wang-Gillam A, et al. A survey of internet utilization among patients with cancer. Support Care Cancer. 2011;19(8):1183–1190.
- 15. Ren ZH, Hu CY, He HR, et al. Global and regional burdens of cancer-related misinformation on social media: a meta-analysis. J Med Internet Res. 2024;26:e55757.
- 16. Johnson SB, Parsons M, Holder T, et al. Cancer misinformation and harmful information on Facebook and other social media: a brief report. J Natl Cancer Inst. 2022;114(7):1036–1039.
- 17. Suarez-Lledo V, Alvarez-Galvez J. Prevalence of health misinformation on social media: systematic review. J Med Internet Res. 2021;23(1):e17187.
- 18. Hamdy FC, Donovan JL, Lane JA, et al. Fifteen-year outcomes after monitoring, surgery, or radiotherapy for prostate cancer. N Engl J Med. 2023;388(17):1547–1558.