Survivorship and Managing Side Effects

Chapter Opening: Ahmed's Story

Ahmed was 62 when he completed radiation therapy and six months of hormone therapy for his intermediate-risk prostate cancer. His PSA dropped to undetectable levels, and his oncologist told him the treatment had gone well. He expected to feel relieved — and he did, briefly. But then came the reality of survivorship.

"Nobody told me that finishing treatment would be the beginning of a different kind of challenge," Ahmed recalls. "The hot flashes kept me up at night. I gained 15 pounds. My erections didn't come back the way I expected. And I was afraid to ask about any of it."

It took Ahmed six months to bring up his sexual difficulties with his doctor, and another three months before he was referred to a specialist who helped him. "I wish someone had told me from the beginning: these side effects are common, they are treatable, and you are not alone."

This chapter is about everything that happens after treatment — the side effects, the adjustments, and the many tools available to help you live well.

Part 1: What Is Survivorship?

Survivorship begins the moment you are diagnosed with cancer — not just when treatment ends. It encompasses everything about living with, through, and beyond cancer: managing side effects, monitoring for recurrence, maintaining your physical and emotional health, and returning to the life you want to live.

Here is the good news: the vast majority of men diagnosed with prostate cancer survive their disease. In the landmark ProtecT trial, after 15 years of follow-up, prostate cancer-specific mortality was only about 3% across all treatment groups — whether men had surgery, radiation, or active monitoring. Deaths from other causes were seven times higher, at approximately 19%, largely from cardiovascular disease and secondary cancers.¹

This means that for most men, the quality of survivorship matters as much as — or more than — the cancer treatment itself.

The American Cancer Society Prostate Cancer Survivorship Care Guidelines identify five key domains of survivorship care:²

1. Health promotion — diet, exercise, weight management, smoking cessation
2. Surveillance for recurrence — PSA monitoring, imaging when indicated
3. Physical side effects — urinary, sexual, bowel, hormonal
4. Psychosocial well-being — anxiety, depression, relationships, return to work
5. Care coordination — communication between your oncologist, primary care doctor, and specialists

Every prostate cancer survivor should have a survivorship care plan — a written document summarizing your diagnosis, treatments received, follow-up schedule, and a plan for managing side effects. Ask your doctor for one if you have not received it.

📊 Illustration 18.1 — The Five Domains of Survivorship Care (wheel diagram)

Part 2: Erectile Dysfunction — Understanding and Managing

How Common Is It?

Sexual dysfunction is the most common long-term side effect of prostate cancer treatment. Studies show that more than 95% of men treated with surgery or radiation experience some degree of sexual dysfunction.³ ⁴ However, the pattern differs by treatment:

• After surgery (radical prostatectomy): Erectile dysfunction is immediate because the nerves that control erections run along the surface of the prostate and may be stretched, bruised, or removed during surgery. Even with nerve-sparing techniques, most men experience significant erectile dysfunction immediately after surgery. Recovery can take 6 to 24 months or longer.⁵ ⁶
• After radiation therapy: Erectile dysfunction develops gradually over 6 to 36 months. Radiation damages the small blood vessels that supply the erectile tissue. The decline is slow, which can be confusing — men may think they are fine initially, only to notice worsening function months later.⁷ ⁸
• During hormone therapy (ADT): ADT suppresses testosterone, which is the primary driver of sexual desire (libido). More than 70% of men on ADT experience erectile dysfunction, but the bigger issue is often loss of interest in sex altogether.⁹

What Determines Recovery?

The two strongest predictors of erectile function recovery are:

• Your baseline function before treatment — men who had strong erections before treatment are more likely to recover them afterward⁵ ⁶
• Your age — younger men recover faster and more completely¹⁰

Other factors include whether nerve-sparing surgery was performed, the type and dose of radiation, whether ADT was used, and your overall cardiovascular health (diabetes, high blood pressure, and smoking all impair recovery).

The Penile Rehabilitation Concept

The idea behind penile rehabilitation is simple: if the penis does not receive regular blood flow and oxygen, the erectile tissue can develop fibrosis (scarring), making future erections more difficult. Rehabilitation aims to keep the tissue healthy while the nerves recover.⁵ ¹¹

A landmark network meta-analysis of 22 studies (2,711 patients) found that sildenafil 100 mg taken regularly (daily or nightly) was the best penile rehabilitation strategy, with a 4-fold higher likelihood of erectile function recovery compared to placebo. Importantly, on-demand dosing (taking the pill only before sex) was no better than placebo for rehabilitation purposes.¹²

Pelvic floor muscle training also showed promise, with a 5-fold higher likelihood of recovery, though the evidence was less certain.¹²

The Treatment Ladder

Think of erectile dysfunction treatment as a ladder — you start with the simplest options and move up if needed:

Step 1: PDE5 Inhibitors (Pills)

These are the first-line treatment. They include sildenafil (Viagra), tadalafil (Cialis), vardenafil (Levitra), and avanafil (Stendra). For rehabilitation after surgery, regular daily or nightly dosing is recommended rather than on-demand use.¹² ¹³

• Tadalafil has the advantage of lasting up to 36 hours
• These medications require some nerve function to work — they may be less effective immediately after surgery but can become more effective as nerves recover
• Common side effects: headache, flushing, nasal congestion, indigestion
• Do NOT take with nitrate medications (for heart disease) — this combination can cause dangerously low blood pressure

Step 2: Vacuum Erection Device (VED)

A VED is a plastic cylinder placed over the penis. A pump creates a vacuum that draws blood into the penis, producing an erection. A constriction ring is then placed at the base to maintain the erection. [VEDs](/rare-disease/vascular-ehlers-danlos-syndrome) have been shown to preserve penile length and improve tissue health when used regularly.¹⁴ ¹⁵ The combination of PDE5 inhibitors plus VED may provide the best results.¹⁶

Step 3: Intracavernosal Injections

A small needle is used to inject medication (usually alprostadil, sometimes combined with papaverine and phentolamine — called "trimix") directly into the side of the penis. This produces an erection within 5 to 15 minutes that lasts 30 to 60 minutes. While the idea of an injection sounds intimidating, most men find it much easier than expected, and satisfaction rates are high.⁵ ¹⁷

Step 4: Intraurethral Suppository (MUSE)

A tiny pellet of alprostadil is inserted into the urethra using a small applicator. It is less invasive than injections but also somewhat less effective.

Step 5: Penile Prosthesis (Implant)

For men who do not respond to other treatments, a penile prosthesis is an excellent option. A surgeon places inflatable cylinders inside the penis, with a pump in the scrotum and a fluid reservoir in the abdomen. When you want an erection, you squeeze the pump. Satisfaction rates are remarkably high — 84% to 100% of men and their partners report satisfaction.⁵ ¹⁷

📊 Illustration 18.2 — The Penile Rehabilitation Ladder (stepwise visual)

📊 Illustration 18.3 — NCCN Sexual Health Treatment Algorithm (simplified)

Neglected Sexual Side Effects

Several sexual changes after prostate cancer treatment are common but rarely discussed:

• Climacturia (urine leakage during orgasm): Affects 20–45% of men after surgery. Emptying the bladder before sex and using a condom can help. Pelvic floor exercises may reduce it over time.¹⁸ ¹⁹
• Anejaculation (dry orgasm): Expected after surgery (100% of men) because the seminal vesicles and prostate are removed. After radiation, 11–71% of men experience reduced or absent ejaculation.¹⁹ ²⁰
• Altered orgasm sensation: Decreased intensity in 44% and complete inability to orgasm in 24% after radiation.²⁰
• Orgasm-associated pain (dysorgasmia): Affects 3–19% of men after both surgery and radiation. Usually improves over time.¹⁹ ²¹
• Penile shortening: Reported by 47–58.5% of men after surgery. Nerve-sparing techniques and early penile rehabilitation with VED may help preserve length.¹⁸ ²²

These side effects are treatable. The most important step is telling your doctor about them.

Part 3: Urinary Incontinence — Regaining Control

How Common Is It?

Urinary incontinence after prostate cancer treatment varies widely depending on how it is measured and which treatment was used:

• After surgery: Most men experience some degree of incontinence immediately after catheter removal. The majority recover significantly within 3 to 6 months, and most achieve good continence by 12 months. However, 2–15% may have persistent significant leakage.² ¹⁰ ²³
• After radiation: Incontinence is less common acutely but can develop as a late effect. Urgency incontinence (sudden strong urge to urinate) is more common than stress incontinence after radiation.²

Types of Incontinence

• Stress incontinence — leakage with coughing, sneezing, laughing, lifting, or standing up. This is the most common type after surgery.
• Urgency incontinence — a sudden, strong urge to urinate that you cannot hold. More common after radiation.
• Mixed — a combination of both.

Pelvic Floor Muscle Training (Kegels) — The Cornerstone

Pelvic floor muscle training (PFMT), commonly known as Kegel exercises, is the most important non-surgical treatment for post-prostatectomy incontinence. A meta-analysis of 20 randomized controlled trials (2,188 men) found that PFMT reduced incontinence rates by 12–25% compared to no exercise, with the greatest benefit in the first 6 months after surgery.²⁴

Key findings from the evidence:

• Start before surgery if possible. Studies show that preoperative PFMT is more effective than starting only after surgery.²⁵ ²⁶
• Supervised training is better than unsupervised. Supervised PFMT causes a significant decrease in short-term incontinence rates, while unsupervised PFMT has similar effects to no PFMT at all.²⁴
• Biofeedback enhances effectiveness. Programs incorporating biofeedback (a device that shows you whether you are contracting the right muscles) show significantly better results — one study found 85% continence with biofeedback vs. 60% without.²⁵ ²⁷
• The combination of electrical stimulation + biofeedback + PFMT is most effective. A network meta-analysis of multiple rehabilitation strategies ranked this combination highest for continence recovery and symptom improvement.²⁸

How to Do Kegel Exercises

1. Find the right muscles. Imagine you are trying to stop the flow of urine midstream, or trying to hold back gas. The muscles you squeeze are your pelvic floor muscles.
2. Contract and hold. Squeeze these muscles for 5 to 10 seconds.
3. Relax. Release for 5 to 10 seconds.
4. Repeat. Do 10 to 15 repetitions, 3 times per day.
5. The Knack maneuver. Before you cough, sneeze, or lift something heavy, quickly contract your pelvic floor muscles. This can prevent leakage in the moment.

Important: Do NOT contract your abdominal, buttock, or thigh muscles. Only the pelvic floor should be working. If you are unsure whether you are doing them correctly, ask for a referral to a pelvic floor physical therapist.

If Incontinence Persists

For men with significant incontinence lasting more than 12 months despite pelvic floor therapy:

• Male sling — a mesh tape placed under the urethra to provide support. Best for mild to moderate incontinence.
• Artificial urinary sphincter (AUS) — a cuff placed around the urethra with a pump in the scrotum. When you want to urinate, you press the pump to open the cuff. This is the gold standard for severe incontinence, with high success rates.² ²³

📊 Illustration 18.4 — How to Do Kegel Exercises (step-by-step anatomical visual)

📊 Illustration 18.5 — Continence Recovery Timeline (month-by-month expectations)

Part 4: Urethral Strictures — A Hidden Complication

What Is a Urethral Stricture?

A urethral stricture is a narrowing of the urethra (the tube that carries urine from the bladder out of the body) caused by scar tissue. After prostate cancer treatment, this scarring can occur at the connection point where the bladder was reattached to the urethra (after surgery) or in the area that received radiation.

How Common Is It?

Strictures are more common than many patients realize:

• After radical prostatectomy: 5–12% (vesicourethral anastomotic stenosis)²⁹ ³⁰
• After external beam radiation: 1.5–13%²⁹ ³¹ ³²
• After brachytherapy (seeds): 1.9–9%²⁹ ³¹
• After combined EBRT + brachytherapy: 4.9–18.4% (the ASCENDE-RT trial found 18.4% in the brachytherapy boost group vs. 5.2% with EBRT alone)³¹ ³²
• After salvage prostatectomy (surgery after failed radiation): can exceed 40%²⁹

The 12-year hazard ratio for urethral stricture after radiation compared to untreated men is 6.49-fold higher; after prostatectomy, it is 5-fold or greater.³³

Symptoms

• Weak urine stream
• Straining to urinate
• Feeling that the bladder does not empty completely
• Frequent urinary tract infections
• Urinary retention (inability to urinate — a medical emergency)

The Patient Awareness Gap

A study of 230 men with post-radiation urethral strictures found that only 30% recalled being told about stricture risk before treatment. The impact on quality of life is severe: 64% reported urinary dysfunction as a "moderate" or "big" problem, 67% reported frequent or total incontinence, and 41% reported depressive symptoms.³⁴

Treatment Options

Treatment follows a stepwise approach:

1. Dilation — stretching the narrowed area with progressively larger instruments. Can be done in the office. Often needs to be repeated — the 5-year retreatment rate after endoscopic management is about 42%.³⁰
2. Visual internal urethrotomy — using a small camera and blade to cut the scar tissue from inside. Similar to dilation in terms of recurrence rates.
3. Self-catheterization — for some men, learning to pass a small catheter periodically can keep the stricture open.
4. Urethroplasty — reconstructive surgery using tissue grafts (often from the inside of the cheek — called buccal mucosal graft). This is the most durable solution, with success rates of approximately 80–87% and no de novo incontinence in experienced hands.³⁵ ³⁶ ³⁷
5. Urinary diversion — rarely needed, reserved for the most severe cases that do not respond to other treatments.

Important: Before treating any stricture, your doctor must rule out cancer recurrence, as a growing tumor can mimic stricture symptoms.²⁹

When to See a Specialist

If you notice a progressively weakening urine stream, difficulty starting urination, or recurrent urinary infections after prostate cancer treatment, ask your doctor about a possible stricture. A referral to a reconstructive urologist may be appropriate, especially if initial treatments have not been successful.

📊 Illustration 18.6 — Urethral Stricture: What It Is and How It Is Treated (cross-section diagram)

Part 5: Bowel Dysfunction — After Radiation

Acute vs. Chronic

Bowel side effects are primarily associated with radiation therapy, since the rectum sits directly behind the prostate:

Acute effects (during and shortly after radiation):

• Diarrhea, increased frequency, urgency
• Rectal discomfort or cramping
• Mucus discharge
• Usually resolve within weeks to months after treatment ends

Chronic effects (months to years later):

• Rectal bleeding (from telangiectasias — fragile new blood vessels)
• Chronic diarrhea or urgency
• Fecal incontinence (1–12%)
• Rectal pain

The 12-year cumulative incidence of radiation proctitis is approximately 5.88 per 1,000 person-years for radiation-treated men vs. 0.07 for untreated men — a hazard ratio of approximately 88.³³

Prevention

Modern radiation techniques have significantly reduced bowel toxicity:

• IMRT/IGRT — intensity-modulated and image-guided radiation therapy precisely shapes the radiation beam to minimize rectal dose
• Rectal spacers (such as SpaceOAR hydrogel) — a gel injected between the prostate and rectum before radiation that pushes the rectum away from the treatment area, reducing bowel disorder risk by approximately 32%³⁸

Management

For acute symptoms:

• Low-residue diet (white rice, bananas, lean protein, well-cooked vegetables)
• Loperamide (Imodium) for diarrhea
• Stool softeners if needed
• Avoid caffeine, alcohol, spicy foods, raw vegetables, and high-fiber foods during treatment

For chronic symptoms:

• Dietary counseling
• Topical steroids or sucralfate enemas for rectal inflammation
• Argon plasma coagulation for persistent rectal bleeding
• Hyperbaric oxygen therapy for refractory cases
• Referral to a gastroenterologist for persistent symptoms

For fecal incontinence:

• Pelvic floor physical therapy
• Dietary modifications
• Sacral neuromodulation in severe cases

📊 Illustration 18.7 — Acute vs. Chronic Radiation Bowel Side Effects (comparison table)

Part 6: Managing ADT Side Effects — A Comprehensive Guide

Androgen deprivation therapy (ADT) is a cornerstone of prostate cancer treatment, but it affects virtually every organ system because testosterone plays a role throughout the body.⁹ ³⁹ ⁴⁰

Hot Flashes

Up to 60–80% of men on ADT experience hot flashes — sudden waves of heat, sweating, and flushing that can last seconds to minutes and occur multiple times daily.⁹ ³⁹

Non-pharmacologic approaches:

• Dress in layers
• Keep the room cool
• Avoid triggers (alcohol, caffeine, spicy foods, hot beverages)
• Exercise regularly
• Acupuncture — evidence supports benefit
• Cognitive behavioral therapy (CBT)

Pharmacologic treatments (per NCCN Survivorship Guidelines):⁴¹

• Venlafaxine (an antidepressant) — reduces hot flash frequency
• Gabapentin — effective, especially for nighttime hot flashes
• Medroxyprogesterone — very effective but has hormonal effects; use with caution
• Low-dose estrogen (diethylstilbestrol) — effective but carries cardiovascular risks

Fatigue

Fatigue is one of the most common and debilitating ADT side effects. The most effective intervention is exercise — both aerobic and resistance training. Screen for contributing factors: anemia, depression, sleep disorders, thyroid dysfunction.² ³⁹

Bone Health

ADT accelerates bone loss and increases fracture risk. A retrospective study of 50,613 men found a higher incidence of fracture in those who received ADT vs. those who did not (19.4% vs. 12.6%).⁹

Prevention and management:

• Baseline DEXA scan and repeat every 1–2 years
• FRAX assessment to estimate fracture risk
• Calcium 1,000–1,200 mg/day (from food + supplements)
• Vitamin D — target serum level 30–50 ng/mL
• Weight-bearing exercise and resistance training
• Pharmacologic options (when indicated):
• Denosumab (Prolia) 60 mg subcutaneous injection every 6 months⁴²
• Zoledronic acid 5 mg IV annually
• Alendronate 70 mg orally weekly
• Dental clearance before starting denosumab or bisphosphonates — these medications carry a small risk of osteonecrosis of the jaw
• Warning about stopping denosumab: Abrupt discontinuation can cause rebound bone loss and vertebral fractures. Transition to a bisphosphonate if stopping denosumab.

📊 Illustration 18.8 — Bone Health Management Flowchart (FRAX → DEXA → treatment decision)

Metabolic Syndrome and Cardiovascular Health

ADT increases the risk of weight gain, insulin resistance, dyslipidemia, diabetes, and cardiovascular events. An observational study of 73,196 patients found that men receiving GnRH agonists had higher rates of diabetes (29.0 vs. 20.9 per 1,000 person-years), myocardial infarction (13.5 vs. 10.9), and sudden cardiac death (12.9 vs. 9.0) compared to men not receiving ADT.⁹

What you can do:

• Mediterranean diet and regular exercise
• Monitor weight, blood pressure, blood sugar, and cholesterol regularly
• Discuss cardiovascular risk with your doctor — referral to a cardiologist or cardio-oncologist may be appropriate
• If you have pre-existing heart disease, discuss the choice of ADT agent with your oncologist (GnRH antagonists like relugolix may have a more favorable cardiovascular profile)

Gynecomastia (Breast Enlargement)

Gynecomastia is the growth of breast tissue in men, often accompanied by tenderness (mastodynia). The incidence varies by ADT type:

• With bicalutamide (antiandrogen monotherapy): up to 70%⁴³
• With standard ADT (LHRH agonists/antagonists): approximately 10%; a recent study of 281 men treated with short-course ADT and SBRT found cumulative moderate-to-severe gynecomastia of 10.3%, peaking at 12 months and resolving by 24 months⁴⁴
• After orchiectomy: 10–15%⁴⁵

Prevention (must be done BEFORE breast tissue develops):

• Tamoxifen 10–20 mg daily — reduces gynecomastia by approximately 82% in meta-analysis. More effective than radiation.⁴⁶ ⁴⁷
• Prophylactic radiation to breast buds — single fraction of 10 Gy or 2 × 6 Gy — reduces gynecomastia by approximately 52%.⁴⁶ ⁴⁷
• Anastrozole — NOT effective; no significant benefit.⁴⁶ ⁴⁷
• Prophylactic tamoxifen is more effective than starting tamoxifen after symptoms develop.⁴⁸

Treatment of established gynecomastia:

• Tamoxifen (if caught early, in the proliferative phase)
• Reduction mammoplasty (surgery) for severe, long-standing cases⁴¹

📊 Illustration 18.9 — Gynecomastia Prevention and Treatment Options

Cognitive Changes and Dementia Risk

This is a growing concern but the evidence remains complex:

• A meta-analysis of 15 studies (1,093 patients) found that ADT worsens subjective cognition (patients perceive more cognitive difficulties) but did not conclusively demonstrate decline in objective cognitive test performance.⁴⁹
• The largest real-world study (627,025 men with prostate cancer) found a 60% increased risk of dementia with ADT (HR 1.6). The highest risk was seen with GnRH antagonists (degarelix, HR 1.92). Interestingly, the increased risk was observed in white men but not in African Americans.⁵⁰
• An updated meta-analysis of 21 studies (2,278,835 patients) confirmed that ADT significantly increases the risk of overall dementia (HR 1.14) and Alzheimer's disease (HR 1.15), with a bell-shaped dose-response relationship peaking at 15.5 to 21.5 months of ADT.⁵¹
• Drug-specific considerations: enzalutamide and apalutamide cross the blood-brain barrier and may have more CNS effects; darolutamide has lower CNS penetration and comparable cognitive disorder rates to ADT alone.⁵²

What you can do:

• Exercise (aerobic + resistance) is the most promising intervention for preserving cognitive function⁵³
• Stay mentally active — puzzles, reading, social engagement, learning new skills
• Use compensatory strategies — lists, reminders, routines, smartphone apps
• Report memory concerns to your doctor — screening for depression, sleep disorders, anemia, and thyroid dysfunction is important, as these can mimic or worsen cognitive symptoms
• If you are over 70 and on long-term ADT, discuss neurocognitive screening with your doctor⁵⁴

📊 Illustration 18.10 — ADT Side Effects Dashboard (body map showing all ADT effects)

Other ADT Side Effects

• Anemia — mild decrease in red blood cells; usually does not require treatment
• Muscle loss (sarcopenia) — resistance training is critical to preserve muscle mass
• Joint and muscle pain — common, especially with newer hormonal agents
• Sleep disturbance — often related to hot flashes and mood changes
• Thinning body hair — some bald men may notice regrowth of scalp hair³⁹
• Testicle atrophy — expected with medical castration
• Decreased penile size — recognized side effect of ADT³⁹

Chapter 18b: Survivorship — Living With and Beyond Side Effects (Continued)

Part 7: Inguinal Hernia After Surgery

A surprisingly common but underrecognized complication of radical prostatectomy is inguinal hernia — a bulge in the groin area where tissue pushes through a weak spot in the abdominal wall.

How Common?

A systematic review and meta-analysis found the following incidence rates:⁵⁵ ⁵⁶

• After open retropubic prostatectomy: 13.7–15.9%
• After laparoscopic prostatectomy: 6.7–7.5%
• After robotic prostatectomy: 3–19.4% (mean approximately 7.9%)
• In untreated controls: approximately 3.3%

Most hernias occur within the first 2 years after surgery and are predominantly indirect type (82–89%).⁵⁵ ⁵⁶ ⁵⁷

Why Does It Happen?

During prostatectomy, the surgeon works in the space behind the pubic bone (the space of Retzius). This can weaken the inguinal floor and disrupt structures that normally prevent hernias. Additionally, some men have a pre-existing weakness (patent processus vaginalis) that becomes apparent after surgery.⁵⁶ ⁵⁸

Prevention

Prophylactic closure of the processus vaginalis during robotic prostatectomy has been shown to reduce hernia incidence from 25% to less than 1% in one study.⁵⁹

Treatment

Standard hernia repair — either open (Lichtenstein) or laparoscopic — is safe and effective after prior prostatectomy. Prior prostatectomy is NOT a contraindication to minimally invasive hernia repair.⁶⁰ ⁶¹

What to Watch For

If you notice a bulge in your groin, especially one that appears when standing or straining and disappears when lying down, tell your doctor. Most inguinal hernias are not emergencies, but they should be evaluated.

📊 Illustration 18.11 — Inguinal Hernia After Prostatectomy: What to Watch For

Part 8: Lymphedema — Swelling After Treatment

What Is Lymphedema?

Lymphedema is swelling caused by damage to the lymphatic drainage system. In prostate cancer, this can occur in the legs or genital area after pelvic lymph node dissection, pelvic radiation, or both.

How Common?

A systematic review found the following prevalence rates:⁶²

• After prostatectomy with pelvic lymph node dissection: lower limb 0–14%, genital 0–1%
• After pelvic radiation: lower limb 0–9%, genital 0–8%
• After combined surgery + pelvic radiation: lower limb 18–29%, genital 2–22% — substantially higher

A large Danish study of 44,101 prostate cancer survivors found that 2% received formal lymphedema treatment and 8% reported swelling. Obesity was a strong risk factor (OR 3.52). Swelling was associated with significantly impaired physical functioning (OR 3.75) and emotional functioning (OR 4.41).⁶³

Key Points from NCCN Survivorship Guidelines:⁶⁴

• Approximately 75% of lymphedema cases are diagnosed within 3 years of treatment, but it can develop at any time
• Early detection is critical — stages 0 and 1 are reversible; stages 2 and 3 are less responsive to treatment
• Progressive weight training and physical activity do NOT worsen lymphedema
• Patients should be educated about early symptoms: fullness, tightness, heaviness, pain

Stages of Lymphedema

• Stage 0 (subclinical): No visible swelling, but lymphatic damage has occurred. May feel heaviness or tightness.
• Stage 1 (mild): Soft swelling that improves with elevation. Pitting edema (pressing leaves an indent). Reversible with treatment.
• Stage 2 (moderate): Swelling that does NOT fully resolve with elevation. Tissue becomes firmer. Partially reversible.
• Stage 3 (severe): Hard, fibrotic swelling. Skin changes (thickening, folds). Difficult to reverse.

Management

• Compression garments
• Manual lymphatic drainage by a certified lymphedema therapist
• Complete decongestive therapy (CDT) — the gold standard, combining manual drainage, compression, exercise, and skin care
• Exercise — resistance training under supervision is safe and may improve symptoms⁶⁴
• Weight management — obesity significantly increases risk
• Skin care — prevent infections in the affected area
• In severe cases: surgical options including vascularized lymph node transfer⁶⁵

📊 Illustration 18.12 — Lymphedema: Signs, Stages, and When to Seek Help

Part 9: Peyronie's Disease — Penile Curvature After Treatment

Peyronie's disease is a condition where scar tissue (plaque) forms inside the penis, causing curvature, pain, and sometimes difficulty with intercourse.

Incidence After Prostate Cancer Treatment

• After radical prostatectomy: 15.9% in men presenting with sexual dysfunction (vs. 3–9% in the general population)⁶⁶
• Mean time to develop after surgery: approximately 14 months⁶⁶
• After external beam radiation: altered curvature reported by approximately 10–12%⁸
• A pilot study found that all 24 men who completed the study developed fibrotic changes and calcification in the penis after prostatectomy, along with significant decreases in penile oxygen levels — suggesting that hypoxia (lack of oxygen) from nerve injury may drive the process⁶⁷

Two Phases

1. Active phase (first 12–18 months): Pain, evolving curvature, plaque formation. Treatment focuses on preventing progression.
2. Stable phase (after 12–18 months): Curvature is fixed, pain usually resolves. Surgical options can be considered.

Treatment Options

Non-surgical (for active phase or mild stable disease):

• Penile traction therapy — mechanical stretching devices worn daily
• Intralesional collagenase clostridium histolyticum (Xiaflex) — FDA-approved; reduces curvature by 16–17 degrees⁶⁸
• Intralesional verapamil or interferon
• Oral agents (vitamin E, colchicine) — limited evidence⁶⁹

Surgical (for stable disease interfering with intercourse):

• Tunical plication (Nesbit procedure) — shortens the longer side to straighten the penis
• Plaque incision/excision with grafting — for severe curvature (>60 degrees)
• Penile prosthesis — if concurrent erectile dysfunction that does not respond to other treatments⁷⁰

Note: The AUA guideline states that radiation therapy should NOT be used to treat Peyronie's disease.⁷⁰

📊 Illustration 18.13 — Penile Changes After Prostate Cancer Treatment (comparison table by treatment type)

Part 10: Fertility Preservation

Why It Matters

While prostate cancer is most common in older men, younger men are increasingly being diagnosed. For any man who may want to have children in the future, fertility preservation must be discussed before treatment begins.

The Impact of Treatment on Fertility

• After surgery: Anejaculation (no ejaculate) is permanent because the seminal vesicles and prostate are removed. Sperm banking MUST be done before surgery.
• After radiation: Sperm quality may be compromised. The radiation field can scatter to the testicles, and sperm DNA integrity may be affected.⁷¹ ⁷²
• During ADT: Testosterone suppression impairs spermatogenesis. Sperm banking should be done before starting ADT.

Sperm Cryopreservation — The Gold Standard

ASCO guidelines recommend that sperm cryopreservation should be offered to all pubertal and postpubertal males before cancer treatment.⁷¹ ⁷²

Key points:

• Even one collection is valuable — intracytoplasmic sperm injection (ICSI) can achieve fertilization with very few sperm
• Sperm can be stored indefinitely when frozen
• The process is simple: provide a semen sample at a fertility clinic or sperm bank
• Cost: typically $500–$1,000 for initial banking plus $200–$500 per year for storage
• Some insurance plans cover fertility preservation for cancer patients — check your coverage
• If you cannot produce a sample naturally, surgical sperm extraction (testicular sperm extraction, or TESE) is an option

After Treatment

• After surgery: Natural conception is not possible without prior sperm banking. Assisted reproduction (IVF/ICSI) using banked sperm is the path forward.
• After radiation: Sperm production may recover over 1–3 years, but quality may be permanently affected. A semen analysis can assess recovery.
• After ADT: Spermatogenesis usually recovers after stopping ADT, but recovery can take 6–18 months or longer. Age and duration of ADT affect recovery.

The Conversation That Matters

If you are a younger man diagnosed with prostate cancer, or if you have not completed your family, bring up fertility with your doctor before any treatment begins. Time is critical — once treatment starts, options become limited.

📊 Illustration 18.14 — Fertility Preservation Decision Tree

Part 11: Secondary Cancers After Treatment

What Is a Secondary Cancer?

A secondary cancer is a new, different cancer that develops as a result of previous cancer treatment. This is different from a recurrence (the original prostate cancer coming back).

The Evidence

A landmark analysis of 44,119 men from the Prostate Cancer Prevention Trial and the Selenium and Vitamin E Cancer Prevention Trial, with 12 years of follow-up, found:³³

• Bladder cancer after radiation: approximately 3-fold increased risk (HR 2.87)
• Radiation cystitis (severe bladder inflammation): 12-year cumulative incidence of 4.70 per 1,000 person-years vs. 0.03 in untreated men — a hazard ratio of 131
• Radiation proctitis (severe rectal inflammation): 12-year cumulative incidence of 5.88 per 1,000 person-years vs. 0.07 in untreated men — a hazard ratio of 88
• Rectal cancer after radiation: modest increase in risk

Putting It in Perspective

While these hazard ratios sound alarming, the absolute numbers are small. The vast majority of men treated with radiation will never develop a secondary cancer. However, this is why long-term follow-up is important, and why any new symptoms (blood in urine, rectal bleeding, changes in bowel habits) should be reported to your doctor promptly — even years after treatment.

Screening Recommendations

• Continue routine colorectal cancer screening as recommended for your age
• Report any new urinary symptoms, especially blood in the urine (hematuria)
• Your doctor should be aware of your radiation history when evaluating any new symptoms

Part 12: When to Call Your Doctor — Red Flags

Not every symptom after prostate cancer treatment is an emergency, but some require urgent attention. Here is a guide:

Call 911 or Go to the Emergency Room If:

• You cannot urinate at all (complete urinary retention)
• You have sudden severe back pain with leg weakness or numbness (possible spinal cord compression)
• You have chest pain, sudden shortness of breath, or leg swelling with pain (possible blood clot)
• You have a fever above 101°F (38.3°C) with shaking chills, especially if on chemotherapy or immunotherapy
• You have uncontrolled bleeding

Call Your Doctor Within 24 Hours If:

• You see blood in your urine that is new or worsening
• You have a fever above 100.4°F (38°C)
• You have severe diarrhea (more than 6 episodes per day)
• You have pain that is not controlled by your current medications
• You notice new swelling in your legs or groin
• You have difficulty swallowing or keeping fluids down

Schedule an Appointment If:

• You notice a gradual weakening of your urine stream
• You have new or worsening erectile dysfunction
• You experience increasing fatigue that does not improve with rest
• You notice mood changes, depression, or anxiety
• You have new bone or joint pain
• You notice a lump or swelling in your groin (possible hernia)
• You have breast tenderness or enlargement
• You notice memory difficulties or "brain fog"

📊 Illustration 18.15 — When to Call Your Doctor: Red Flags (traffic light visual — red/yellow/green)

Part 13: The Survivorship Care Plan

Every prostate cancer survivor should have a written survivorship care plan. This document serves as a roadmap for your long-term health and should be shared with all of your doctors.

What Should It Include?

Treatment summary:

• Your diagnosis (stage, Gleason score, PSA at diagnosis)
• All treatments received (surgery, radiation, hormone therapy, chemotherapy — with dates and doses)
• Names and contact information of your treatment team

Follow-up schedule:

• How often to check PSA (typically every 3–6 months for the first 5 years, then annually)
• When to get imaging studies
• What symptoms to watch for

Side effect management plan:

• Current side effects and how they are being managed
• Referrals to specialists (urologist, sexual health specialist, physical therapist, mental health professional)

Health promotion:

• Exercise recommendations
• Dietary guidance
• Smoking cessation (if applicable)
• Screening for other cancers (colon, lung, skin)
• Cardiovascular risk management
• Bone health monitoring (if on ADT)

Psychosocial support:

• Mental health resources
• Support group information
• Financial counseling resources

How to Get One

Ask your oncologist or primary care doctor for a survivorship care plan. Many cancer centers now provide these automatically at the end of treatment. If yours does not, the American Society of Clinical Oncology (ASCO) offers free templates at survivorshipcareplan.org.

📊 Illustration 18.16 — Survivorship Care Plan Template (sample one-page summary)

Questions to Ask Your Doctor

About sexual health:

• What is the expected timeline for erectile function recovery after my treatment?
• Should I start penile rehabilitation? If so, when and how?
• Are there specialists (sexual health, urology) I should see?
• Could my other medications be contributing to erectile dysfunction?

About urinary health:

• Should I see a pelvic floor physical therapist?
• How long should I wait before considering surgical options for incontinence?
• Could my symptoms be caused by a stricture rather than incontinence?

About ADT side effects:

• How long will I be on hormone therapy?
• Should I have a DEXA scan for bone density?
• What can I do about hot flashes?
• Should I be screened for diabetes or cardiovascular risk?
• Is prophylactic treatment for gynecomastia appropriate for me?

About survivorship:

• Do I have a survivorship care plan?
• How often should I follow up, and with whom?
• What symptoms should prompt me to call you between visits?
• Are there clinical trials for managing side effects?
• Can you refer me to a support group?

Myth vs. Fact

Myth: "If my PSA is undetectable, I am cured and do not need follow-up."

Fact: An undetectable PSA is excellent news, but long-term follow-up is still important. Late recurrences can occur years after treatment, and monitoring for treatment side effects and secondary cancers is essential.¹ ²

Myth: "Erectile dysfunction after prostate cancer treatment is permanent and untreatable."

Fact: While erectile dysfunction is common, it is highly treatable. A stepwise approach — from pills to vacuum devices to injections to implants — means that virtually every man can achieve satisfactory erections with the right treatment.⁵ ¹² ¹⁷

Myth: "Incontinence after surgery means I will need pads forever."

Fact: Most men recover continence within 3 to 12 months after surgery. Pelvic floor exercises significantly speed recovery. For the small percentage with persistent incontinence, surgical options like the artificial urinary sphincter have excellent success rates.²⁴ ²⁵

Myth: "Exercise is dangerous during or after cancer treatment."

Fact: Exercise is one of the most beneficial things you can do during and after treatment. It reduces fatigue, improves mood, preserves muscle and bone, and may even improve cancer outcomes. The NCCN Survivorship Guidelines strongly recommend regular physical activity.² ⁶⁴

Myth: "Hot flashes only happen to women."

Fact: Up to 80% of men on ADT experience hot flashes. They are caused by the sudden drop in sex hormones — the same mechanism as in menopause. Effective treatments are available.⁹ ⁴¹

Myth: "If I have side effects, it means the treatment worked."

Fact: Side effects and treatment effectiveness are not directly related. You can have excellent cancer control with minimal side effects, or significant side effects without better cancer outcomes. Side effects are a consequence of treatment, not a measure of its success.

Key Takeaways

1. Survivorship is a journey, not a destination. It begins at diagnosis and continues for the rest of your life. Having a written survivorship care plan is essential.
2. Side effects are common, expected, and treatable. Whether it is erectile dysfunction, incontinence, hot flashes, or fatigue — effective treatments exist for virtually every side effect. The most important step is telling your doctor.
3. Pelvic floor exercises (Kegels) are your best friend. Start before surgery if possible, do them consistently, and consider supervised training with biofeedback for the best results.
4. Bone health matters on ADT. Get a baseline DEXA scan, take calcium and vitamin D, exercise regularly, and discuss bone-protective medications with your doctor.
5. Know the red flags. Complete urinary retention, spinal cord compression symptoms, signs of blood clots, and high fevers require immediate medical attention.
6. You are not alone. Support groups, counseling services, and survivorship programs exist to help you and your family navigate this journey.

Support Resources

• American Cancer Society — cancer.org — 1-800-227-2345
• Prostate Cancer Foundation (PCF) — pcf.org
• ZERO — The End of Prostate Cancer — zerocancer.org
• Us TOO International — ustoo.org — peer support and education
• LIVESTRONG Foundation — livestrong.org — survivorship support
• CancerCare — cancercare.org — free counseling and support groups
• Man Cave Health — mancavehealth.org — men's health education
• National Association for Continence — nafc.org
• Sexual Medicine Society of North America — smsna.org — find a sexual health specialist
• ASCO Survivorship Care Plan Templates — survivorshipcareplan.org

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