PROSTATE CANCER PATIENT GUIDE - Cancer Resource

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PROSTATE CANCER PATIENT GUIDE - Cancer Resource

Transcript Of PROSTATE CANCER PATIENT GUIDE - Cancer Resource

PROSTATE CANCER
PATIENT GUIDE
A comprehensive resource on diagnosis, treatment, side effects, and risk factors for patients and families with a history of prostate cancer.

“Be vigilant, live healthy, and don’t give up. This disease can be conquered.”
— FORMER COMBAT MARINE, KOREAN WAR

About this guide
There are no two ways about it: being diagnosed with cancer is hard and it is lifechanging. Despite increasing optimism about treatment, today’s cancer landscape can be challenging, as patients have access to an unprecedented amount of information. There are literally millions of cancer-related webpages, blogs, and videos available at your fingertips. But it’s important to acknowledge that this isn’t always a helpful thing. A cancer diagnosis can be disorienting, and for many, the overwhelming volume of information available can be more of a burden than an aid.
This guide focuses all of the information available about contemporary prostate cancer research, treatment, and lifestyle factors into one consolidated resource. It is for any man who has been newly diagnosed, who is in treatment, or is concerned about a rising PSA. Beyond that, it’s for any loved one or caregiver who wants to cut through the information noise and get directly to need-to-know information for prostate cancer patient navigation. Lastly, as we are beginning to recognize the genetic underpinnings of cancer, this guide is for any family member who might want to understand how their shared genes affect their own short- and long-term risk factors—and whether they should be screened as well.
We gratefully acknowledge the scholarly expertise and contributions of our Editors, who are world leaders in prostate cancer research: Daniel Spratt, MD (University of Michigan); Andrea Miyahira, PhD (Prostate Cancer Foundation); Heather Cheng, MD, PhD (University of Washington, Fred Hutchinson Cancer Research Center); Stacy Loeb, MD, MSc, PhD (hon) (New York University and Manhattan Veterans Affairs); Matthew Cooperberg, MD, MPH, (University of San Francisco); Alicia Morgans, MD (Northwestern University); Arthur Burnett, MD, MBA (Johns Hopkins University); Nima Sharifi, MD (Cleveland Clinic); William Aronson, MD (UCLA); Angelo Baccala Jr., MD, FACS, MBA (Lehigh Valley Health Network); Neal Shore, MD, FACS (Carolina Urologic Research Center); James Schraidt (UsTOO); Chuck Strand; Andrew Armstrong, MD (Duke University); Bill Curry; Izak Faiena, MD (University of California, Los Angeles); Christopher Sweeney, MBBS (Dana-Farber Cancer Institute, Harvard Medical School); Howard Soule, PhD (Prostate Cancer Foundation); Stuart Holden, MD (Prostate Cancer Foundation); Jonathan Simons, MD (Prostate Cancer Foundation); Rebecca Campbell, MD, MPH (Prostate Cancer Foundation) and Julie DiBiase, PhD (Prostate Cancer Foundation).
This is a 2020 digital update of the guide, which was originally released in 2017 by the Prostate Cancer Foundation (PCF). The Prostate Cancer Foundation is the world’s leading philanthropic organization funding and accelerating prostate cancer research. Since its beginning in 1993, the Prostate Cancer Foundation has funded key research leading to many of the treatments used by doctors today to improve the lives of patients, with the mission that someday, soon, no man will die of this disease.
Subjects depicted are models and are used for illustrative purposes only. Prostate cancer standards of practice change regularly. For the most up-to-date information, please register for updates at pcf.org.

► TABLE OF CONTENTS

ABOUT THIS GUIDE

1

1. ABOUT YOU AND PROSTATE CANCER

7

GENERAL INFORMATION

7

WHAT IS PROSTATE CANCER?

7

SURVIVING PROSTATE CANCER

7

RATES OF DIAGNOSIS

7

RISK FACTORS

9

SYMPTOMS

9

HISTORY & PROGRESS

10

MEDICAL BASICS

11

THE ANATOMY OF THE PROSTATE

12

THE BIOLOGY OF PROSTATE CANCER

12

UNDERSTANDING METASTASIS

13

WHAT IS PSA?

13

THE BIOLOGY OF SEX STEROIDS

14

PRECISION ONCOLOGY

15

2. FOR THE NEWLY DIAGNOSED

17

UNDERSTANDING YOUR DIAGNOSIS

17

DETECTION, DIAGNOSIS AND STAGING

17

MAKING THE DIAGNOSIS VIA BIOPSY

17

STAGING YOUR DISEASE

19

SELECTING YOUR TREATMENT

21

ASSEMBLING YOUR TEAM

22

DOCTORS AND PRACTITIONERS

22

FAMILY

22

YOUR SUPPORT NETWORK

23

YOU

25

PROCESSING YOUR DIAGNOSIS

25

TEAR-OUT SHEET: QUESTIONS TO TAKE TO YOUR DOCTOR AFTER INITIAL DIAGNOSIS

27

2 ► TABLE OF CONTENTS

3. TREATMENT OPTIONS FOR LOCALIZED OR LOCALLY ADVANCED PROSTATE CANCER 29

CHOOSING A TREATMENT OPTION

29

RISK GROUPS

29

ACTIVE SURVEILLANCE

31

WHO SHOULD CHOOSE ACTIVE SURVEILLANCE?

32

SURGERY

33

RADIATION

34

EXTERNAL BEAM RADIATION THERAPY (EBRT)

34

BRACHYTHERAPY

36

HORMONE THERAPY WITH RADIATION

36

EXPERIMENTAL THERAPIES FOR LOCALIZED PROSTATE CANCER

37

CRYOTHERAPY

37

PROTON BEAM RADIOTHERAPY

38

HIGH INTENSITY FOCUSED ULTRASOUND (HIFU)

38

PRIMARY HORMONE THERAPY

38

WORKSHEET: LOCAL OR LOCALLY ADVANCED PROSTATE CANCER

39

4. LIVING WITH AND AFTER PROSTATE CANCER

43

IN TREATMENT: WHAT TO EXPECT

43

MENTAL HEALTH

43

MAXIMIZING QUALITY OF LIFE

43

MONTORING FOR RECURRENCE

44

POSSIBLE SIDE EFFECTS

44

URINARY FUNCTION

44

BOWEL FUNCTION

45

FERTILITY

46

SEXUAL FUNCTION

46

PERMANENT UPGRADES TO HEALTHY LIVING

50

DIET

50

EXERCISE

50

LIFESTYLE CHANGES

51

PROSTATE CANCER PATIENT GUIDE ► 3

5. WHAT TO DO IF YOUR PSA STARTS TO RISE

53

DETECTING RECURRENCE

53

UNDERSTANDING THE NUMBERS

53

PSA DOUBLING TIME

54

LOCAL TREATMENTS FOR RECURRENT PROSTATE CANCER

55

SALVAGE RADIATION THERAPY FOLLOWING SURGERY

58

SALVAGE PROSTATECTOMY FOLLOWING RADIATION

58

BRACHYTHERAPY FOLLOWING EXTERNAL BEAM RADIATION

58

CRYOTHERAPY FOLLOWING RADIATION

59

HORMONE THERAPY FOLLOWING RADIATION OR SURGERY

59

THERAPIES FOR ADVANCED (RECURRENT OR METASTATIC) PROSTATE CANCER

59

HORMONE THERAPY

59

TYPES OF HORMONE THERAPY (ANDROGEN DEPRIVATION THERAPY OR ADT)

60

INTERMITTENT HORMONAL THERAPY

61

THERAPIES FOR HORMONE-RESISTANT PROSTATE CANCER

63

THERAPIES FOR NON-METASTATIC CRPC

63

THERAPIES FOR METASTATIC CRPC

64

2ND-GENERATION ANTI-ANDROGENS

65

NON-HORMONAL THERAPY OPTIONS

65

TAXANE CHEMOTHERAPY

65

PLATINUM CHEMOTHERAPY

66

SIPULEUCEL-T IMMUNOTHERAPY

66

PEMBROLIZUMAB

67

RADIUM-233

67

EXTERNAL BEAM RADIATION THERAPY (EBRT)

68

OTHER BONE-TARGETING TREATMENTS

68

SIDE EFFECTS FROM TREATMENTS FOR ADVANCED PROSTATE CANCER

69

SIDE EFFECTS OF HORMONE THERAPY

69

SIDE EFFECTS OF 2ND-GENERATION ANTI-ANDROGENS

70

SIDE EFFECTS OF CHEMOTHERAPY

70

4 ► TABLE OF CONTENTS

6. CUTTING-EDGE DEVELOPMENTS IN PROSTATE CANCER RESEARCH

73

WHAT IS PRECISION MEDICINE?

73

EMERGING NEAR-TERM THERAPIES

74

PARP INHIBITORS

74

PSMA RADIONUCLIDE THERAPY

74

THE FUTURE LANDSCAPE OF PROSTATE CANCER PRECISION THERAPY

75

PRECISION SCREENING

75

IMMUNE CHECKPOINT INHIBITORS

75

CAR T CELLS

76

PROSTVAC

76

MICROBIOME

76

CLINICAL TRIALS: HOW TO GET INVOLVED

76

DRUGS FOR ADVANCED PROSTATE CANCER

76

7. FOR OUR SONS, DAUGHTERS & GRANDCHILDREN

79

THE GENETICS OF RISK

79

SCREENING FOR PROSTATE CANCER

79

SHOULD MY FAMILY MEMBERS BE SCREENED?

79

WHEN TO START—AND STOP—SCREENING

80

SCREENING AND BIOPSY DECISIONS

81

PROSTATE CANCER GENES IN FAMILIES

81

“CASCADE” GENETIC TESTING

82

THE NUANCES OF GENETIC SCREENING

83

HOW TO GET GENETIC COUNSELING AND TESTING

83

THE FUTURE LANDSCAPE OF CANCER

85

PREVENTION

85

DIET AND EXERCISE

85

CHECKLIST: LIFESTYLE CHANGES FOR PROSTATE CANCER PREVENTION

86

APPENDIX: YOUR CARE DURING THE COVID-19 PANDEMIC

88

PROSTATE CANCER PATIENT GUIDE ► 5

3►
“Keep on living your life. I’ve never let anything interfere with my treatments, but I’ve continued to live the life I want to lead.”
— PATIENT

1 ► ABOUT YOU AND PROSTATE CANCER
See Appendix for 2020 COVID-19 Updates.
GENERAL INFORMATION
What is Prostate Cancer? In general, cancer is a condition in which a normal cell becomes abnormal and starts to grow uncontrollably without having the signals or “brakes” that stop typical cell growth. Prostate cancer starts in the prostate, a small gland located below the bladder that is responsible for secreting one of the components of semen. Prostate cancer cells form masses of abnormal cells known as tumors.
Prostate cancer, therefore, is when a normal prostate cell becomes altered and starts growing in an uncontrolled way.
In many cases, prostate cancer is relatively slowgrowing, which means that it takes a number of years to become large enough to be detectable, and even longer to spread outside the prostate, or metastasize. However, some cases are more aggressive and need more urgent treatment.
Surviving Prostate Cancer More than 90% of all prostate cancers are detected when the cancer is in the prostate or the region around it, so treatment success rates are high compared to most other types of cancer in the body. The 5-year relative survival rate in the United States for men diagnosed with prostate cancer is 99%. In other words, the chances of the cancer spreading or men dying from their prostate cancer is generally low. However, prostate cancer comes in many forms and some men can have aggressive prostate cancer even when it appears to be confined to the prostate.

Amidst much optimism and progress in the last 10 years, it’s important to keep in mind that prostate cancer is still a deadly disease for some men, and it is the second leading cause of cancer death among men in the U.S., with nearly 87 men dying from it every day.
In general, the earlier the cancer is caught and treated, the more likely the patient will remain disease-free. In fact, many men with “low-risk” tumors, which are the most common type of prostate cancer, can safely undergo active surveillance, in which they are monitored without immediate treatment (and treatment-related side effects) while still preserving their chance of long-term survival if the cancer becomes aggressive enough to require treatment.
Rates of Diagnosis Prostate cancer is the third most prevalent type of cancer in the U.S. and the fourth most common worldwide. Nearly 175,000 new cases are estimated in the U.S. for 2019, and about 1.27 million men were diagnosed globally in 2018. Approximately one in nine men in the U.S. will be diagnosed with prostate cancer at some point in their lives. The older you are, the more likely you are to be diagnosed with prostate cancer.
Although only about 1 in 437 men under age 50 will be diagnosed, the rate shoots up to 1 in 59 for ages 50 to 59, 1 in 22 for ages 60 to 69, and 1 in 13 for men 70 and older. Nearly 60% of all prostate cancers are diagnosed in men over the age of 65.

IS THERE A CURE FOR PROSTATE CANCER?
When people think about cancer treatment success, they often think of the word “cure.” Thanks to advances in treatment in the last 15 years, it is often possible to say that a man has been “cured” of prostate cancer. However, more often statisticians think of “cure” as a function of time: is 5 years without a cancer recurrence equal to a cure? Or is it 10 years? Unfortunately, in some men, prostate cancers can recur even 10 years after treatment. So instead of using the term “cure,” doctors commonly use terms such as biochemical control (PSA levels kept at bay) or freedom from developing metastatic disease (the cancer has not spread to distant organs) to help quantify the success of prostate cancer treatment.

SUBSCRIBE AT PCF.ORG FOR THE LATEST UPDATES ► 7



20 genes
that run in families have been discovered that have overlap from prostate cancer to other cancers.

Prostate cancer can be silent — it’s important to get checked, even if you have no symptoms.

Since 1993, deaths from prostate cancer have been cut in half.

99%
Prostate cancer is 99% treatable if detected early.




Prostate cancer has one of the highest survival rates of any cancer.

10 THINGS TO KNOW

A man of African descent is 76% more likely to develop prostate cancer.
76%

Thanks to emerging science, in the next 5 years, we may see an end to all incurable prostate cancer.

As men age, their risk of developing prostate cancer increases exponentially.

In the U.S., prostate cancer is the
most common
non-skin cancer in men.

2x

Men with relatives with a history of prostate cancer may be twice as likely to develop the disease.

8 ► ABOUT YOU AND PROSTATE CANCER
Prostate CancerCancerTreatmentPhdProstate Cancer Foundation