Us TOO International Prostate Cancer Education & Support Network


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	ABOUT PROSTATE CANCER

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Advanced Disease

Made possible through charitable donations from Novartis Oncology, AstraZeneca, Endo Pharmaceuticals, Veridex, Ferring Pharmaceuticals, GTx, Inc. and people like you!

Advanced Prostate Cancer Resource Kit

UsTOO International Prostate Cancer
Education & Support Network is Here for You

If you're looking for valuable knowledge and perspective to help you manage your advancing prostate cancer, the information in this kit will be of great interest to you. Available online or in print, it's one of the many resources from Us TOO that will help you ask the right questions, evaluate your options, and make choices that are best for you and your family. You can also attend a local support group meeting, access our web site and online discussion communities, read our monthly HotSheet and Chapter NEWS newsletters, or call us to request whatever assistance you need.

Advancing Disease

This kit was created to address the increasing number of requests for information specific to advancing disease. Most men with advancing disease have been managing their prostate cancer for some time and are familiar with the basic information surrounding the disease including anatomy, initial treatment options, and side effects from those treatments. Therefore, the material in this kit is focused on providing you with accurate, unbiased information that’s most relevant and most useful to help you make the best decisions for effectively managing your advancing prostate cancer.

Advanced Prostate Cancer Disease Resource Kit - 4 page summary

This kit includes the following material, which is specific to advancing prostate cancer:

Principles for Managing Advanced Prostate Cancer

Focuses on effectively managing advancing disease with guidance from an Us TOO team and implementation of 7 Principles of Empowerment:

Principle #1: Chart Your Disease Data
Principle #2: Assess Your Disease State
Principle #3: Identify Your Treatment Options
Principle #4: Develop and Reassess Your Treatment Plan
Principle #5: Anticipate Side Effects and Know How to Manage Them
Principle #6: Recognize the Eventual Need for an End-of-Life Plan
Principle #7: Empower Yourself Daily through Diet, Exercise, Spirituality, and Humor

All of the content for each brochure shown below can be accessed by clicking on the picture of the brochure:

Additional Advanced Disease Materials

A The Prostate Cancer Playbook	B What Now? Hope and Options When Experiencing a Rising PSA, a Recurrence of Prostate Cancer or When Prostate Cancer is Not Responding to Treatment	C Signposts – Understanding Diagnostic Tests and Procedures to Monitor Prostate Cancer
D Prostate Cancer Patient’s Guide to Hormone Therapy	E Bone Health in Focus	F What You Need to Know for Better Bone Health
G Hope, Recovery, Support After Prostate Cancer Surgery	H In Control – The Facts About Male Urinary Incontinence	I Us TOO HotSheet – Burning Issues Supplement Prostate Cancer and Incontinence
J What You Need to Know About Your Partner’s Prostate Cancer	K Us TOO HotSheet – Monthly Newsletters	L Living With Prostate Cancer (Hard copy only)

In addition to the 7 Principles of Empowerment found
in the Principles for Managing Advanced Prostate Cancer,
more information about each principle can be found on the Us TOO web site and in the
Additional Advanced Disease Materials (Brochures A – L as pictured above)
with content on specific pages of each brochure as noted below.

PRINCIPLES FOR MANAGING ADVANCED PROSTATE CANCER

ADDITIONAL ADVANCED DISEASE MATERIALS

Principle #1	Chart Your Disease Data	p. 10
Principle #2	Assess Your Disease State	p. 13
Principle #3	Identify Your Treatment Options	p. 15
Principle #3	Questions To Ask Your Doctor	p. 17
Principle #4	Develop and Reassess Your Treatment	p. 20
	Hormone Management	p. 20
	Radiation, Immunotherapy And Chemotherapy	p. 23
	Consider Clinical Trials	p. 27
Principle #5	Anticipate Side Effects and Know How to Manage Them	p. 28
	Maintain Bone Health	p. 28
	Minimize Pain	p. 29
	Manage Incontinence	p. 30
	Maintain Intimacy	p. 31
Principle #6	Recognize the Eventual Need for an End-of-Life Plan	p. 32
Principle #7	Empower Yourself Daily through Diet, Exercise, Spirituality, and Humor	p. 34

A. The Prostate Cancer Playbook B. What Now?	pp. 11, 34, 35 pp. 38, 39
B. What Now? C. Signposts L. LivingWith Prostate Cancer*	pp. 7-9 Throughout pp. 8, 9
A. The Prostate Cancer Playbook J. What You Need to Know About Your Partner’s Prostate Cancer L. Living With Prostate Cancer*	p. 14 p. 5 p. 3
A. The Prostate Cancer Playbook B. What Now?	pp. 24-32 p. 3
A. The Prostate Cancer Playbook B. What Now? L. Living With Prostate Cancer* K. Us TOO HotSheet Monthly Newsletter	p. 15 pp. 4, 5 p. 3 Ongoing
D. Guide to Hormone Therapy B. What Now? L. Living With Prostate Cancer*	pp. 15-21 p. 14 Throughout
A. The Prostate Cancer Playbook B. What Now? L. Living With Prostate Cancer*	p. 15 pp. 12, 22 pp. 12, 13
A. The Prostate Cancer Playbook B. What Now?	p. 17 p. 26
K. Us TOO HotSheet Monthly Newsletter	Ongoing
E. Bone Health in Focus F. What You Need to Know for Better Bone Health B. What Now? A. The Prostate Cancer Playbook	Throughout Throughout p. 32 p. 23
A. The Prostate Cancer Playbook B. What Now?	p. 13 p. 25
H. In Control I. HotSheet - Burning Issues Supplement G. Hope, Recovery, Support	Throughout Throughout pp. 13-19, 34
G. Hope, Recovery, Support	pp. 23-30, 36
A. The Prostate Cancer Playbook	p. 38
A. The Prostate Cancer Playbook B. What Now?	pp. 18, 22 pp. 29, 31, 33

* Hard copy only

Chart Your Disease Data

Medical Smart Chart for graphing tests/results: www.pcref.org/sample_graph2.php
Access for you to personalize Medical Smart Chart: www.pcref.org/medsmartchart.php

Assess Your Disease State

Us TOO advanced disease web pages: www.ustoo.org/ADK
The Us TOO Inspire Online Discussion Community:
http://ustoo.inspire.com provides online peer-to-peer support and discussions specific to advancing prostate cancer to connect patients, families, friends, caregivers and health professionals for health and wellness support.
Prostate Pointers: www.ustoo.org/Prostate_Pointers.asp features 14 focused & moderated email discussion lists.
My Prostate Cancer Roadmap: www.myprostatecancerroadmap.com is an educational web site that provides resources and information specific to advanced prostate cancer patients and those who love them.
Shirley Grey’s “Ten Things I Learned While Loving in Sickness and in Health:”
www.myprostatecancerroadmap.com/take-the-journey/relationship-ten-things-i-learned
CancerCare: What’s New on the Horizon – Treatment Choices for Men Living with Advanced Prostate Cancer:
www.cancercare.org/pdf/booklets/ccc_prostate_advanced.pdf
CancerCare: Living with Metastic Prostate Cancer: www.cancercare.org/pdf/booklets/ccc_mprostate.pdf
Email addresses of Us TOO peer support team members: See page 6.
Ask Dr. Barken Call-In Show: www.pcref.org/call_in_show.php

DEVELOP AND REASSESS YOUR TREATMENT PLAN

Treatment Options: www.ustoo.org/Treatment_Options.asp
Find Us TOO Support Groups:
http://www.ustoo.org/Chapter_NearYou.asp?country1=United%20States
Monthly prostate cancer resource from Charles “Snuffy” Myers, MD: Prostate Forum: www.prostateforum.com/index.html
Prostate cancer videos from Charles “Snuffy” Myers, MD: http://snuffymyers.blogspot.com/
Personal perspective on treatment from Paul F. Schellhammer, MD:
www.foundationforurologicalresearch.com/downloads/My%20Side.pdf
“Views from the Other Side: Personal Reflections About Prostate Cancer from Two Urological Oncologists” – Paul H. Lange, MD, FACS and Paul F. Schellhammer, MD, FACS:
www.foundationforurologicalresearch.com/downloads/ViewsFromTheOtherSide.pdf
Prostate cancer videos from Gerald Chodak, MD: www.prostatevideos.com/
Malecare Advanced Prostate Cancer Program Blog:
http://advancedprostatecancer.net/
Malecare Advanced Prostate Cancer Program: http://malecare.org/advanced-prostate-cancer-program/

ANTICIPATE SIDE EFFECTS AND KNOW HOW TO MANAGE THEM

Post-Treatment Issues: www.ustoo.org/post_treatment_issues.asp
Special Supplement: “Chemotherapy and Taste Issues”,
www.ustoo.org/ChemoSideEffects
Agent Orange Compensation: www.vba.va.gov/bln/21/benefits/herbicide/aono3.htm
Prostate cancer videos from Charles “Snuffy” Myers, MD: http://snuffymyers.blogspot.com/
The National Association for Incontinence:
www.nafc.org
The Simon Foundation for Continence:
www.simonfoundation.org
National Pain Foundation – Cancer Pain: www.nationalpainfoundation.org/cat/8/cancer-pain

RECOGNIZE THE EVENTUAL NEED FOR AN END-OF-LIFE PLAN

Five Wishes (End-of-Life): www.agingwithdignity.org/catalog/
Advanced Cancer Care Planning from American Society of Clinical Oncology:
www.cancer.net/patient/Coping/Advanced+Cancer+Care+Planning
Hospice Care: www.helpguide.org/elder/hospice_care.htm

EMPOWER YOURSELF DAILY THROUGH DIET, EXERCISE, SPIRITUALITY AND HUMOR

Nutrition: www.cancer.gov/cancertopics/coping/eatinghints/page1 and:
www.ustoo.org/post_treatment_issues.asp#LiveHealthy
The Cancer Project – promotes cancer prevention and survival with nutrition
www.cancerproject.org

ADVOCACY AND AWARENESS OPPORTUNITIES

Pints for Prostates: awareness/fundraising events, www.pintsforprostates.org
Zero – The Project to End Prostate Cancer:
www.zerocancer.org
Women Against Prostate Cancer:
www.womenagainstprostatecancer.org

PROSTATE CANCER NON-PROFITS

Us TOO International Prostate Cancer Education & Support Network: wwww.ustoo.org
Prostate Cancer Research Institute:
www.prostate-cancer.org/pcricms/
Prostate Conditions Education Council:
www.prostateconditions.org/
Men’s Health Network:
www.menshealthnetwork.org
Prostate Health Education Network (PHEN):
www.prostatehealthed.org/
The “New” Prostate Cancer Infolink:
http://prostatecancerinfolink.net/
American Cancer Society Man to Man:
www.cancer.org/Treatment/SupportProgramsServices/MantoMan/index
National Cancer Institute – Prostate Cancer:
http://www.cancer.gov/cancertopics/types/prostate
National Alliance of State Prostate Cancer Coalitions:
www.naspcc.org

ACKNOWLEDGEMENTS

Us TOO International Education & Support Network would like to recognize the following team of people who created this guide:
Pam Barrett Fred Gersh Russ Gould Shirley Grey, RN, MSN Jerry Hardy Jim Kiefert, EdD Thomas Kirk	Kay Lowmaster, MSW, LCSW Fred Mills Charles “Snuffy” Myers, MD Charlie Sauer Paul F. Schellhammer, MD Kathy Scortino, RN, MA, LCPC Chuck Strand

DISCLAIMER

The medical information and procedures contained in this guide are not intended as medical advice, nor are they intended as a substitute for consulting with a physician or health care provider. All matters pertaining to your health should be supervised by a health care professional. This material is intended to be used only for educational purposes. It is not a substitute for informed medical advice from a physician.