Audio, Video, Tools & Links
Us TOO Publications | Webinars/Audio/Video Archives | Books of Interest | Physician Resources | Financial Assistance Resources | Other Resources | Us TOO Online Information Request Center
Us TOO Publications
Brochures & Pamphlets – To request hardcopies of the following materials, use our online Information Request Center. Otherwise, click on the links below to read PDF documents.
- About Us TOO International – tri-fold brochure
- Special News About Prostate Cancer For Men At High Risk – brochure
- “Conoce tu PSA” (Know Your PSA: Special News About Prostate Cancer For Men At High Risk) – Spanish language brochure
- A Message For American Indian Men, Alaskan Native Men, and People Who Care About Them
- Special News About Prostate Cancer For Men At High Risk – 11×17” poster
- Pathways for New Prostate Cancer Patients – brochure listing options for the newly diagnosed
- Signposts: Understanding Diagnostic Tests to Monitor Prostate Cancer – brochure
- Resource Kit for Making Prostate Cancer Decisions – kit of brochures & materials for the newly diagnosed
- Good News: Prostate Cancer Recommended Resources – 2-page flyer
- Identifying Clinically Significant Prostate Cancers – Special HotSheet Burning Issues Supplement
- A Systems Pathology Approach to Post-Surgical Patients with Anxiety – Special HotSheet Burning Issues Supplement
- Bone Health in Focus: A Report on Prostate Cancer’s Impact on Bones
- What You Need to Know for Better Bone Health
- Bone Health Take Action Tips
- Taking Care of Yourself While Living With Cancer: Dental Health and Osteonecrosis of the Jaw
- Prostate Cancer Patient’s Guide to Hormone Therapy
- Prostate Cancer Recovery Guide: Hope, Recovery, Support – Insights to help you live life restored after prostate cancer surgery – 70-page brochure
- In Control: Facts About Male Urinary Incontinence – brochure
- Prostate cancer and incontinence: coping strategies and treatment options – Special HotSheet Burning Issues Supplement
- Principles for Managing Advanced Prostate Cancer
- Advanced Prostate Cancer Resource Kit Summary
- Empower Yourself with Knowledge
- What now? Hope and options when experiencing a rising PSA, a recurrence of prostate cancer, or when prostate cancer is not responding to treatment
- The Prostate Cancer Playbook: For Prostate Cancer Recurrence, Rising PSA, and Advanced Disease – brochure
- Clinical Trials for Advanced Prostate Cancer – Special HotSheet Burning Issues Supplement
- What You Need To Know About Your Partner’s Prostate Cancer – A Guide for Wives, Partners and the Men They Love
- HotSheet – Us TOO’s monthly newsletter, featuring articles on advances in research, treatments, diagnostics and much more
- Prostate Cancer NEWS You Can Use – Us TOO’s monthly e-newsletter, featuring prostate cancer stories in the news
- Chapter NEWS! – bi-monthly newsletter highlighting activities and accomplishments of volunteers and Us TOO chapter support groups in their local communities
Poster Sessions
Videotapes and DVDs – To request, please call 630-795-1002 or email ustoo@ustoo.org
- About Prostate Cancer 0:30 sec Public Service Announcement (Spanish language) – DVD
- About Prostate Cancer 0:30 sec Public Service Announcement (Spanish language) – VHS
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“Todo Lo Que Usted y Su Familia Necesita Saber Sobre el Cancer de Prostata”
(“What Every Man and his Family Should Know About Prostate Cancer”) – 15 min. VHS, see transcript in English here -
“Todo Lo Que Usted y Su Familia Necesita Saber Sobre el Cancer de Prostata”
(“What Every Man and his Family Should Know About Prostate Cancer”) – 15 min. DVD, see transcript in English here
Other Brochures and Pamphlets
- Prostate Cancer Screening: A Decision Guide – from U.S. Dept. of HHS, CDC
- Prostate Cancer Screening: A Decision Guide for African Americans – from U.S. Dept. of HHS, CDC
- NCI booklet: Understanding Prostate Changes: A Health Guide for Men
- NCI booklet: Treatment Choices for Men With Early-Stage Prostate Cancer – NEW 2006 edition
Us TOO Annual Reports
Webinars/Audio/Video Archives
Audio / Webinars
- Understanding Diagnostic Testing for Prostate Cancer Patients, Us TOO teleconference and webinar held October 13, 2010, featuring Manish Bhandari, MD
- Estrogen Deficiency Side Effects Due to Androgen Deprivation Therapy Treatment for Prostate Cancer, Us TOO teleconference and webinar held September 23, 2009, featuring Samir Taneja, MD
- The Group Room radio show on Sharing, Caring, and Supporting Each Other Through Illness, held November 4, 2007
- Intimacy & Prostate Cancer, More intimacy solutions for prostate treatment-related impotence, Us TOO teleconference held October 30, 2007, featuring Lawrence S. Hakim, MD
- Intimacy & Prostate Cancer, Solutions for reclaiming or redefining the intimate relationship as a result of prostate treatment-related impotence, Us TOO teleconference held February 13, 2007, featuring Arnold Bullock, MD
- Expanding Treatment Horizons in Prostate Cancer, Us TOO / HealthTalk teleconference held October 5, 2006
- The Group Room radio show Prostate Cancer Special on treatment options, held March 19, 2006
- The Group Room radio show on Prostate Cancer Awareness, held September 25, 2005
- Prostate Cancer Care: Past, Present and Future – Featuring Tom Kirk, Us TOO President & CEO, Jim Kiefert, EdD, Us TOO Board Chairman, Maureen Kiefert, caregiver advocate, and James McKiernan, MD. This was an Us TOO / HealthTalk live broadcast and teleconference held September 22, 2005.
- Us TOO Bone Health Teleconference (10 MB file) – Featuring Stephen Strum, MD and Bill Blair, held on January 20, 2005
- Prostate Cancer & Your Bones: Take Steps to Prevent Bone Complications, Us TOO / HealthTalk teleconference held November 15, 2004
- Prostate Cancer & Your Bones: Prevention and Treatment Strategies, Us TOO / HealthTalk teleconference held October 20, 2004
- Prostate Cancer & Your Bones: The Latest Treatment Updates, Us TOO / HealthTalk teleconference held September 23, 2004
Video
- Us TOO International Summit, Symposium and 20-Year Celebration for men and their families battling prostate cancer, Us TOO University patient education program held August 20-21, 2010 in Chicago, featuring presentations from more than 30 speakers
- Watch more Us TOO videos on the Us TOO International YouTube channel
- View physician presentations from Prostate Forum of Orange County, CA Us TOO chapter meetings
Books
Physician Resources
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American Psychosocial Oncology Society (APOS)
Offers free referral service for obtaining local counseling and support services for cancer patients, caregivers and advocacy organizations -
American Society of Clinical Oncology (ASCO)
The world’s leading professional organization representing physicians who treat people with cancer, ASCO is committed to advancing the education of oncologists and other oncology professionals, to advocating for policies that provide access to high-quality cancer care, and to supporting the clinical trials system and the need for increased clinical and translational research. Referrals to a medical oncologist in your area are available from ASCO on Cancer.Net/Finding a New Doctor page -
American Society for Therapeutic Radiology and Oncology (ASTRO)
The American Society for Therapeutic Radiology and Oncology has created a Web site to help people living with a diagnosis of cancer and their families better understand their treatment options. Referrals to a radiation oncologist in your area are available from ASTRO on RTAnswers.org -
American Urological Association (AUA)
The premier professional association of physicians specializing in the advancement of urologic patient care, providing a wide range of services—including publications, research, the Annual Meeting, continuing medical education (CME) and the formulation of health policy. Referrals to a urologist in your area are available from AUA on UrologyHealth.org - Ask Dr. Barken Weekly Telephone Call-In Show – Israel Barken MD
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Ask Dr. Myers
Video Q+A blog from Dr. Charles "Snuffy" Myers - Dr. Charles "Snuffy" Myers’ Prostate Forum Newsletter
- The New Prostate Cancer InfoLink – Arnon Krongrad MD
- Physician-to-Patient (P2P) – this Prostate Pointers moderated mailing list provides the opportunity to read focused discussion about clinical problems with prostate cancer. Patients post questions with accompanying medical history and specialists in the field of prostate cancer offer ideas to discuss with your physician
- Prostate Videos.com – Gerald Chodak MD
Financial Assistance Resources
- Patient Advocate Foundation – has many helpful resources, including a state-by-state financial resources directory, National Underinsured Resource Directory, and co-pay relief
- American Cancer Society – Health Insurance and Financial Assistance for the Cancer Patient
- Cancer Financial Assistance Coalition (CFAC) – Helps patients and their loved ones connect with organizations that offer financial assistance
- Cancer Legal Resource Center (CLRC) – The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, employers, health care professionals, and others coping with cancer
- Cancer Support Community – see their book Frankly Speaking About Cancer: Coping with the Cost of Care
- Social Security and Disability Resource Center – Written by a former claims examiner, this information may be helpful for individuals who have the need to file for Social Security Disability benefits.
- For veterans of Vietnam, Gulf War, Iraq, Afghanistan – this link will give you all sorts of information on the Agent Orange connection to prostate cancer, and links to the Department of Veterans Affairs medical claims process.
Travel
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Corporate Angel Network
Providing free nationwide air transportation to and from treatment centers for cancer -
Mercy Medical Airlift National Patient Travel Center
Partners with Angel Flight to Cancer Patients to provide charitable (free) airline tickets for cancer patients and their escorts going to or from distant specialized evaluation, diagnosis or treatment facilities -
American Cancer Society Hope Lodge
A free place to stay when you are having treatment. Several locations throughout the country.
Early access programs
- Abiraterone clinical trial access
- Provenge: Dendreon ON Call
- Amgen Assist™ – Get comprehensive access and reimbursement and co-pay support for XGEVA™.
Prescription Assistance / Patient Assistance Programs (PAP)
- Diplomat Specialty Pharmacy Patient Advocacy Navigator – Can help patients with funding to off-set high co-payments. Also has pharmacists, nurses and oncology patient navigators on staff to answer any questions about your medications. See flyer for more info
- Needy Meds – a 501-c-3 non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care. Provides free access to online databases such as Patient Assistance Programs, Disease-Based Assistance, Free and Low- Clinics, government programs and other types of assistance programs. Also has resources for Patient Advocates.
- Novartis Oncology Patient Assistance NOW – provides programs that may help pay for medicines like Zometa® (zoledronic acid) Injection, and/or provide access to drugs still in clinical trial. Also read their Brochure
Negotiating
- How to Ask for a Reduced Medical Bill
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Bargaining Down the Medical Bills – tips on negotiating costs in an excellent NY Times article:
Tips and suggestions from an Us TOO Inspire community member, Feb 2011:
- Do not be intimidated to ask for a discount even if none was offered up front. Ask and then ask again if that is the best they can do. Ask for the billing manager.
- Explain your total financial situation. Even if your bill with them is small if you are facing large total bills they sometimes have "catastrophic financial" discounts the billing manager can offer.
- Knowledge is power. If you can find out or estimate what medicare/medicaid is reimbursing for the procedure that is a great starting point. Tell them you are paying out of your own pocket and so why should you pay more than a medicare patient would. I told them my starting point was the medicare reimbursement amount but that I was willing to pay 2x that to be "fair". they often jumped at that…even though it was still less than half the original bill.
- Doctors are often happy to be paid anything at all and they prefer to be paid sooner than later. So if all else fails you can tell them that unless you can decrease the amount you will have to pay them $10 per month for the rest of your life. They often would prefer to get less and get it NOW than to get more and have to wait and chase the money down later.
More Resource Listings
- Cancer.net Financial Resources – a comprehensive overview for patients on managing the cost of cancer care and many helpful resources, from the American Society for Clinical Oncology (ASCO)
- CancerCare – Financial Assistance for cancer patients
- Livestrong – Financial & Government Assistance Programs
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National Cancer Institute (NCI) – Financial, Insurance, and Legal Information
Good information on government-sponsored and other national organizations that offer financial aid for cancer-related expenses, including treatment, co-pays, travel, lodging, etc. - Patient Resource Cancer Guide – Financial help for patients & families
Other Resources
National
- All Sports Foundation – Prostate On-Site Project mobile screening van program
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CANCER101
Provides planners to cancer centers in all 50 states to give free to their patients and caregivers in need. Planners include essential organizational tools and important resources designed to empower patients and caregivers to take control over their diagnosis. -
Cancer.com
A comprehensive listing of credible websites for those whose lives are touched by cancer -
CancerCare
Provides online and telephone patient education -
Cancer Financial Assistance Coalition (CFAC)
Helps patients and their loved ones connect easily with organizations that offer financial assistance. -
Cancer Legal Resource Center (CLRC)
The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, employers, health care professionals, and others coping with cancer. -
The Cancer Project
The Cancer Project promotes cancer prevention and survival through a better understanding of cancer causes, particularly the link between nutrition and cancer. -
Cancer Support Community
Uniting The Wellness Community and Gilda’s Club Worldwide, the Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer -
Center for Information and Study on Clinical Research Participation (CISCRP)
A non-profit organization founded in 2003 that educates, informs and empowers patients, the public, medical and research professionals, the media and policymakers about clinical research participation -
Coalition of Cancer Cooperative Groups (Cancer Clinical Trials)
A nonprofit organization providing patient awareness of clinical trials, facilitating access, promoting participation, and examines and confronts key issues impeding cancer research. -
Congressionally Directed Medical Research Programs (CDMRP)
Department of Defense Prostate Cancer Research Program is the world’s 2nd largest funding agency for prostate cancer research.Read the "PCRP Perspectives" newsletter here. -
Conquer Prostate Cancer: How Medicine, Faith, Love and Sex Can Renew Your Life
Rabbi Ed Weinsberg, a prostate cancer survivor, patient healthcare and intimacy educator, author, and participant in several Us TOO forums, offers free teleseminars in support of prostate cancer patients, survivors and their wives or partners: “Enhancing Sexual Intimacy After Prostate Cancer" and "How Family, Friends and Support Groups Can Help You Get Through Prostate Cancer Treatment and Side Effects." - Fans for the Cure – Ed Randall’s Fans for the Cure is dedicated to the twin propositions of spreading the gospel of prostate cancer awareness and education. Founded by prostate cancer survivor and sports broadcaster, Ed Randall.
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HealthEcho.com – Directory of Health
Large health and medicine web directory for both humans and animals, linking to more than 30,000 health-related organizations -
Imerman Angels
Provides one-on-one cancer support, connecting cancer fighters, survivors and caregivers. -
International Union Against Cancer
As the world's largest independent, non-profit, non-governmental association of cancer-fighting organisations, UICC brings together a wide range of international organisations, including voluntary cancer societies, research and treatment centres, public health authorities, patient support networks and advocacy groups. UICC disseminates knowledge and fosters best practices on a global scale. With over 270 member organisations in more than 80 countries, UICC is a resource for action and a voice for change. -
malecare.org
A website dedicated to men's health and cancer, prostate cancer, testicular cancer and male breast cancer treatment and support -
Men's Health Network (MHN)
A national non-profit organization whose mission is to reach men and their families where they live, work, play, and pray with health prevention messages and tools, screening programs, educational materials, advocacy opportunities, and patient navigation. -
National Alliance of State Prostate Cancer Coalitions (NASPCC)
An umbrella organization meant to encompass participation by all states – through their state prostate cancer coalitions, state prostate cancer task forces or state prostate cancer foundations. -
National Association For Continence (NAFC)
A national, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence; a leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence. -
National Cancer Institute (www.cancer.gov)
Offers comprehensive information about coping with cancer, cancer causes and prevention, screening and diagnosis, treatment and survivorship; clinical trials; statistics; and more -
National Coalition for Cancer Survivorship
This national, patient-led advocacy organization works on behalf of people with all types of cancer. Through its educational programs, publications and public policy expertise, NCCS is strengthening the cancer survivorship movement, empowering cancer survivors, and advocating for policy issues that affect survivors' quality of life -
Navigating Cancer
Online community for cancer patients and their support network offering free health tracking tools and personalized resources to improve their care and quality of life during treatment. -
NexProfiler Treatment Options Tool for Prostate Cancer
Free, web-based, personalized tool for identifying treatment options -
OncoLink
The University of Pennsylvania Cancer Center Resource -
Patient Advocate Foundation
A national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job discrimination, and or debt crisis matters relative to their diagnosis through case managers and attorneys -
People Living with Cancer
The award winning patient website from the American Society of Clinical Oncology that provides accurate, comprehensive, oncologist-approved information to help people make informed health care decisions - Peyronie's Disease – Association of Peyronie's Disease Advocates Provides information, support, and relevant referral services to patients, partners, and physicians seeking Peyronie’s disease resources.
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Pints For Prostates
A grassroots campaign that uses the universal language of beer to reach men with an important health message, with appearances at beer festivals, social networking and pro bono advertising. -
Prostate.com
A comprehensive resource for information about the prostate, diseases of the prostate, and the available treatments -
Prostate Conditions Education Council (PCEC)
Conducts nationwide screenings for men and performs research that will help the detection and treatment of prostate cancer and other men’s health issues -
Prostate Cancer Foundation
Prostate Cancer Foundation (PCF) is the world's largest philanthropic source of support for prostate cancer research -
Prostate Cancer Research Institute (PCRI)
The objective of PCRI is to educate patients and their families about prostate cancer -
Prostate Cancer Roundtable
a group of 12 independent, patient-centric, not-for-profit organizations that cooperate to foster the development and implementation of a national policy agenda supporting high quality prostate cancer research, the prevention and early detection of clinically significant prostate cancer, the appropriate care and effective treatment of men with prostate cancer, and the appropriate education of all men at risk for this disease. Us TOO is a charter member of this group. -
Prostate Cancer Statistics
Information from the NCI Surveillance Program (SEER), the CDC National Center for Health Statistics -
Prostate Pointers
An active online prostate community -
Scott Hamilton CARES Initiative – 4th Angel Program
A free, national service which provides a one-to-one supportive mentor relationship (phone or email based) to cancer patients and their caregivers. -
The Prostate Net
provides understandable and accurate cancer-related information in areas with significant minority populations -
The Simon Foundation for Continence
A non-profit 501-c-3 organization dedicated to bringing the topic of incontinence out into the open, removing the stigma surrounding incontinence, and providing help and hope for people with incontinence, their families, and the health professionals who provide their care. -
The Group Room radio show
Weekly syndicated cancer talk show, Sundays -
World Wide Prostate Cancer Coalition (WWPCC)
The WWPCC is a confederation of patient and professional organizations from around the world that will seek to share information, ideas, visions and dreams to minimize the impact of prostate diseases, especially prostate cancer, in the global community. -
YANA Now – You Are Not Alone Now
Read and post stories and experiences from prostate cancer survivors. -
ZERO: The Project to End Prostate Cancer (formerly NPCC, the National Prostate Cancer Coalition)
Advocacy and mobile van screening program -
50 Hoops
Non-profit, 501-c-3, national cancer awareness basketball tournaments and health fairs, plus National Physician & Family Referral Project (NPFR), which develops seminars, lecture series and coalitions of African American leaders for various diseases.
Regional
- California Prostate Cancer Coalition
- Seattle Cancer Care Alliance
- University of Michigan Prostate Cancer Home Page
- University of Washington Genitourinary Oncology Clinical Research Group
International
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Other Topics
Nutritional Information
- American Dietary Association
- Dietary Guidelines
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Unite-4Life
A website focused on providing critical nutritional information for anyone concerned with the prevention of cancer or its reoccurrence - USDA Nutrient Database
Activism
- Prostate Action Network is a tool box, provided by Ralph Valle, for prostate cancer activists. The press releases, speeches, fact sheets and other material here are intended to be adapted by prostate cancer patients and their families and friends to stimulate increased awareness, more funding and improved treatment options
End of Life Issues
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Last Acts
Call-to-action campaign dedicated to improving end-of-life care through sharing of ideas and solutions by professional care givers, institutions and individuals. The Last Acts web site includes news updates, a resource center and reports on palliative care, family needs, service providers, education and training, and financing and the workplace
Alternative Medicine
- National Center for Complementary and Alternative Medicine recently established by Congress
- The Cancer Chronicles are now on-line which includes news and commentary by Ralph W. Moss, PhD, founding editor of this publication. The Cancer Chronicles constitute a comprehensive archive of information about non-toxic cancer treatments