Caregivers, Screening & Support

The team at the International Prostate Cancer Foundation has worked hard to create a comprehensive guide on prostate cancer caregiving. Click here to download or visit the download center for other download options.

List of online resources

The websites and information resources listed are not the property of the International Prostate Cancer Foundation. The International Prostate Cancer Foundation does not assure the accuracy or timeliness of the information and provides these references for your convenience only.

Prostate Cancer Education, Information and Resources
There are many places for prostate cancer patients and their families or caregivers to go for current information on prostate cancer.

The International Prostate Cancer Foundation
Education Center
Published data indicates that early, accurate treatment by experienced doctors is crucial in prostate cancer care. Understanding the disease and all available options is essential before finalizing a treatment plan. The IPCF education center aims to educate patients and caregivers with the latest updates on all things prostate cancer.

The International Prostate Cancer Foundation
Resource Download Center
Our Resource Center provides comprehensive prostate cancer education, shopping lists for prostate-healthy foods, support groups, wellness practices, and checklists. Additionally, we offer free downloadable books for managing prostate cancer at any stage and for supporting someone with a prostate cancer diagnosis.

Center for Disease Control – ASK NATHAN: Nathan is here to share information and answer your questions about prostate cancer screening and treatment. He also suggests some questions you might want to ask your doctor.

Prostate Health Education Network – PHENTV.com Prostate Cancer Educational Videos. PHEN’s mission also includes advocacy efforts to increase the overall support and resources for a war on prostate cancer that will lead to a cure for the disease for the benefit of all men.

Support Groups & Online Communities
There are several support groups for prostate cancer patients and their families or caregivers. If you do not find one near you on the sites listed below, try contacting your local hospitals and treatment centers. They often have support groups or know of others in your community.

ZERO Prostate Cancer Get access to lifesaving information and support, connect with others in the prostate cancer community, and take action to ZERO out prostate cancer.

ZERO360 Whether you need help understanding your insurance coverage options, finding sources of financial aid, or resolving issues with your insurance company, we are here to help. ZERO360 is your co-pilot in navigating your prostate cancer journey.

Call (844) 244-1309 to connect with
a ZERO360 Case Manager.

Smart Patients Smart Patients is an online community where patients and caregivers learn from each other.

Patients Like Me Online group with questions and answers from people who have prostate cancer.

Us TOO International 1-800-808-7866
Us TOO International is a grassroots, non-profit prostate cancer education and network of over 325 support group chapters worldwide, providing men and their families with free information, materials and peer-to-peer support.

Support group chapters:
www.ustoo.org/Support-Group-Near-You

Us TOO Inspire online community:
www.inspire.com/inspire/group/us-too-prostate-cancer/

YANA You Are Not Alone Now Prostate Cancer Support Site

Malecare 212-673-4920
Malecare is the largest all volunteer grassroots, non-profit men’s cancer support and advocacy nonprofit in the United states. Malecare is unique in providing support groups focused on men presenting with advanced disease and for gay and bisexual men.

Malecare online community:
www.outwithcancer.org

Malecare moderated email discussion lists:
health.groups.yahoo.com/group/prostatecancerunder50/

health.groups.yahoo.com/group/prostatecancerandgaymen/

health.groups.yahoo.com/group/advancedprostatecancer

Malecare doctor to patient advice:
www.prostatecanceradvice.org

Imerman Angels 1-877-274-5529
Imerman Angels partners a person fighting cancer with someone who has beaten the same type of cancer.

Cancer Hope Network 1-877-467-3638
Matches cancer patients one-on-one with someone who has recovered from a similar experience.

The Scott Hamilton CARES Initiative – 4th Angel Program
1-866-520-3197
Free, national service which provides a one-to-one supportive relationship (phone or email based) to cancer patients and their caregivers.

Frank Talk Online Discussion Forums
Online only: Discussion forums devoted to the topic of erectile dysfunction.

DailyStrength Prostate Cancer Support Group

CancerCompass Prostate Cancer Discussions

Treatment Diaries Treatment Diaries is a social network for those living with illness, newly diagnosed or caring for someone with a medical condition.

Friend for Life Cancer Support Network
502-893-0643 or 866-374-3634
Pairing Patients with a trained survivor of a similar experience so they can face cancer with someone who's been there.

Cancer Information and Counseling Line (CICL) Providing support and follow up care to cancer survivors since the AMC created the Cancer Information and Counseling Line in 1981.

Other notable Cancer organizations

American Association for Cancer Research
aacr.org or (866) 423-3965
The American Association for Cancer Research provides research grants, publishes several prestigious medical journals, and has an active patient education program.

American Cancer Society
cancer.org or (800) 227-2345
The site includes information about the ACS and statistics about prostate cancer incidence rates.

American Urological Association Foundation
urologyhealth.org or (800) 828-7866
This organization is dedicated to the prevention and cure of urologic diseases, such as prostate cancer, through research, education, and public awareness. The site includes research facts, educational material, and advocacy information.

Cancer Information Service of the National Cancer Institute
cancer.gov/cancertopics/types/prostate or (800) 4-CANCER,
301-435-3848 and TTY: 800-332-8615
This is the most useful gateway for information from the National Cancer Institute. From here, you can access a portion of the contents of PDQ®—the Physician Data Query database—which provides detailed information about specific cancers written for both medical professionals and patients.

Department of Defense Center for Prostate Disease Research (CPDR) cpdr.org or (240) 453-8900
The CPDR is a prostate cancer research program funded by the US Army that conducts nationwide research at US Army, Navy, and Air Force hospitals.

National Coalition for Cancer Survivorship
canceradvocacy.org or (301) 650-9127
The National Coalition for Cancer Survivorship is a grassroots network of individuals and organizations working on behalf of people with all types of cancer.

National Comprehensive Cancer Network
nccn.com or (215) 690-0300
Dedicated to improving the quality and effectiveness of cancer care, this not-for-profit organization is made up of 21 of the world’s leading cancer centers.

Patient Advocates for Advanced Cancer Treatments (PAACT)
paactusa.org or (616) 453-1477
PAACT offers the latest news releases regarding prostate cancer and new treatment options. You will also find a list of pertinent links for additional information sources.

Patient Advocate Foundation
757-873-6668 or 800-532-5274
patientadvocate.org

PROMISE Registry PROMISE is a registry of prostate cancer patients participating in a research study to learn how genetic differences can affect patient outcomes. prostatecancerpromise.org

Prostate Conditions Education Council (PCEC)
prostateconditions.org or (866) 477-6788
The PCEC is a leading provider of information about prostate health issues. In addition to providing a wide range of information about prostate cancer and related health topics.

Office of Minority Health
800-444-6472
minorityhealth.hhs.gov

Cancer Information and Support Network
cisncancer.org

Cancer Legal Resource Center
cancerlegalresourcecenter.org 866-843-2572

Cancer Research Institute
800-992-2623 or 212-688-7515
cancerresearch.org

Cancer Support Community
888-793-WELL (9355) or 202-659-9709
cancersupportcommunity.org

Cancer Survivors Gathering Place
cancersurvivorsplace.org

Cancer Trials Support Unit
ctsu.org or 888-823-5923

FDA Cancer Liaison Program
fda.gov/ForConsumers or 1-888-INFOFDA

Hospice Foundation of America
hospicefoundation.org or 800-854-3402

International Association for Hospice and Palliative Care (IAHPC)
936-321-9846 or 866-374-2472 or 346-571-5919
hospicecare.com

National Library of Medicine
301-594-5983 or 888-FIND-NLM (888-346-3656)
nlm.nih.gov

National Cancer Survivors Day Foundation
ncsdf.org or 615-794-3006

Office of Cancer Survivorship
301-402-2964
dccps.nci.nih.gov/ocs

communities & support groups

A support group is a gathering of people who share a common health concern or similar issues, whether that's, relationship problems, major life changes or illness, such as prostate cancer, diabetes, heart disease, addiction or long-term caregiving. A support group shouldn't replace your standard medical care, but it can be a valuable resource to help you cope.

Support groups are not the same as group therapy sessions. Group therapy is a formal type of mental health treatment that brings together several people with similar conditions under the guidance of a trained mental health provider.

Support groups may be formed by a lay person with the condition or by someone interested in it, such as a family member. In some cases, support groups may be formed by nonprofit organizations, advocacy organizations, mental health clinics or other organizations.

Support groups also come in a variety of formats, including in person, on the Internet or by telephone. They may be led by professional facilitators — such as a nurse, social worker or psychologist — or by group members.

Online Communities
There are numerous prostate cancer communities and support groups that you can find online. Facebook, Twitter and Google are just a few ways in which to search for, follow, and participate in these support groups and communities.

Organizations that offer online social networking communities and support groups for prostate cancer often display social media icons. Simply click on those icons to join or follow.

Understanding Support Groups
Members of support groups often share experiences and advice. It can be helpful just getting to talk with other people who are in the same situation.

While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges.

Benefits of Support Groups
Members of a support group offer one another emotional comfort and moral support, while being a great source of information and encouragement. They may also offer practical advice and tips to help you cope with your prostate cancer treatment or diagnosis and more. Such as:

Feeling less lonely, isolated or judged
Gaining a sense of empowerment and control
Improving your coping skills and sense of adjustment
Talking openly and honestly about your feelings
Reducing distress, depression, anxiety or fatigue
Developing a clearer understanding of what to expect with your situation
Getting practical advice or information about treatment options
Comparing notes about resources, such as doctors and alternative options
Gain instant camaraderie and support
A chance to talk about your disease and ask questions
Help coping with advanced prostate cancer, such as how to share news of your disease with others
Help dealing with practical problems, such as getting to and from doctor visits
A supportive environment to recognize milestones in treatment

How to find a Support Group
What support group, if any, you ultimately choose may depend largely on what's available in your community, whether you have access to a computer or whether you're able to travel.

Plan to attend a few support group meetings to see how you fit in. If the support group makes you uncomfortable or you don't find it useful, try another one. Remember that even a support group you like can change over time as participants come and go. Periodically evaluate the support group to make sure it continues to meet your needs.

Ask your doctor or other health care provider for assistance. Your doctor, nurse, social worker, chaplain or psychologist may be able to recommend a support group for you.
Search the Internet. Online support groups are available as email lists, newsgroups, chat rooms, blogs and social networking sites, such as Facebook.
Contact local centers. Contact community centers, libraries, churches, mosques, synagogues or temples in your area and ask about support groups.
Check your local listings. Look in your local telephone book or check your newspaper for a listing of support resources.
Ask people you know with the condition. Ask others you know with the same illness or life situation for support group suggestions.
Contact organizations. Contact a state or national organization devoted to your disease, condition or situation.

Be aware that you may be at a different stage of coping or acceptance than are others in the support group. Or they may have a different attitude about their situation. Don't feel obligated to keep attending the group if you don't feel it's a good fit — find another group to try.

Questions to Ask Before Joining
Each type of support group has its own advantages and disadvantages. You may find that you prefer a structured, moderated group. Or you may feel more at ease meeting less formally with a small group of people. Some people may prefer online support groups.

Ask these questions before joining a new support group:

Is it geared toward a specific condition?
Is the location convenient for regular attendance?
What is the meeting schedule?
Is there a facilitator or moderator?
Is a mental health expert involved with the group?
Is it confidential?
Does it have established ground rules?
What is a usual meeting like?
Is it free, and if not, what are the fees?
Does it meet your cultural or ethnic needs?

Getting the Most Out of a Support Group
When you join a support group, you may be nervous about sharing personal issues with people you don't know. At first, you may benefit from simply listening. Over time, though, contributing your own ideas and experiences can help you get more out of a support group.

Remember that support groups aren't a substitute for regular medical care. Let your doctor know that you're participating in a support group. If you don't think a support group is appropriate for you, but you need help coping with your condition or situation, talk to your doctor about counseling or other types of therapy.

Take the Lifestyle Assessment

The International Prostate Cancer Foundation has developed a great tool for assessing your baseline health. You may want to print the results and share them with your doctor. Together, you’ll be able to discuss what steps toward a healthier lifestyle you should take next. And this baseline will help you know when you are making improvements! To take the quiz, click here.

This is living with Cancer phone app

Cancer is a life-changing illness. Today, with advances in treatment and screening, more than 32 million people worldwide are living with cancer.

Telling the stories of real people who are living with cancer and providing free tools like the LivingWith app is helping redefine life with cancer.e. Pfizer Oncology created this amazing app to help support and inspire those who have been affected by cancer.

Download the app here!

caregiver support

Although prostate cancer strikes only men, a diagnosis of prostate cancer can have a profound impact on a patient’s spouse/partner and family. The disease and its treatment can have a significant impact on lifestyle, quality of life and emotional well-being. Caregivers play a very important role in patients’ care. Not only do caregivers provide support outside of doctor’s appointments but can also be an important member of his healthcare team.

Being a caregiver can have its challenges. Communicating with the patient is very important. This can help with decisions regarding his care. It can also help with open communication and emotional support for both patient and caregiver.

Although it’s natural for the prostate cancer patient/survivor and loved ones/caregivers to feel many emotions including anxiety, fear and frustration, it’s important to take charge of managing the disease and to recognize that knowledge is power. Below are some tips that can reduce some of the anxiety and confusion that comes with a diagnosis of prostate cancer.

Learn
The International Prostate Cancer Foundation site offers a complete overview of information about the prostate, prostate cancer, and its treatment, and educational materials. Visit the Education Center or the Resources Center to guide you through this journey. And don’t forget to download the Prostate Cancer Caregiver Guide for a hands-on reference guide to caregiving for a prostate cancer patient from diagnosis to facing end of life planning.

Communicate
A diagnosis of prostate cancer can lead to feelings of fear, anxiety, and depression. Your loved one will need understanding and listening without judgment. Do not pressure him to talk about his feelings before he is ready. Just knowing that you are there for him when he needs you can make a big difference to his sense of emotional wellbeing.

Participate
Ask patient if he would like support at doctor appointments and tests. Men often do not like to discuss their health, and your loved one may benefit from your presence as an advocate who can help voice concerns to the doctor. Also, being educated about the disease and the treatment options can help. Be prepared with questions to ask the doctor about the disease and treatment options. Find out what kind of side effects may occur after treatment and how they may affect quality of life for him and impact others.

Find Community
Some caregivers find it helpful to go to therapy or join a support group. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges.

National Association for Home Care & Hospice
nahc.org or 202-547-7424
National Family Caregivers Association
301-942-6430 or 800-896-3650
nfcacares.org
Family Caregiver Alliance
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s and other debilitating disorders that strike adults.
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
www.caregiver.org
info@caregiver.org
FCA CareJourney:
www.caregiver.org/carejourney
Family Care Navigator: www.caregiver.org/family-care-navigator
Caregiving Resources:
www.thisislivingwithcancer.com/get-support
Other Organizations and Links:
AARP www.aarp.org
Administration for Community Living: For caregiver support groups, respite providers, and other caregiving services.
www.acl.gov
Eldercare Locator
eldercare.acl.gov
(800) 677-1116
ARCH National Respite Network and Resource Center
www.archrespite.org
MyCancerCircle.net™
mycancercircle.net
Organize help from friends and family. MyCancerCircle is a free, private and customizable online tool that enables people facing cancer to organize and coordinate a circle of family members and friends to provide practical and emotional support. MyCancerCircle.net provides caregivers of people facing cancer a simple, effective answer to a question they are asked constantly, “What can we do to help?” You can also use MyCancerCircle.net to look for professional or volunteer resources in your community.

FAcing End of life

We all know that death is a natural part of life and that it will happen to us all one day, but most of us hope that we won’t die anytime soon. Realizing that death is close can be frightening and hard to believe. For some people, it may be a relief.

Some people have cancer that no longer responds to treatment, and others will choose to opt out of treatment – but all must face the fact that they will soon die. Learning that your loved-one may not have long to live is shocking news, for both of you. Even if you are both aware that the cancer is progressing, hearing those words can be extremely upsetting.

To understand this topic in more detail download the Prostate Cancer Caregiver Guide. This is a hands-on reference guide to caregiving for a prostate cancer patient from diagnosis to end of life planning. Reference pages 65-68 or download this infographic to get you started: Understanding Advanced Directives Infographic.

financial help

The cost of medical treatment is among the many concerns you may have if you, a friend, or family member has been diagnosed with cancer. Because bills and debt can add up quickly, people may want to seek financial help soon after being diagnosed with cancer. Oncology social workers, case managers, doctors, and oncology nurses can help or provide referrals to support services and financial resources.

Although coping with daily financial responsibilities may sometimes seem overwhelming, it is important not to let bills pile up and go unpaid. In addition to information from social workers and other health care providers, there are also several national and local service organizations that help people with cancer who are facing financial challenges.

Contact these organizations directly to learn more about their specific programs and services, including eligibility criteria.

The Cancer Financial Assistance Coalition (CFAC) is a group of national organizations that provide financial help to patients. CFAC provides a searchable database of financial resources.

CancerCare's financial assistance programs (800-813-4673) provide limited financial assistance for people affected by cancer.

The HealthWellFoundation (800-675-8416) is an independent, non-profit organization that helps insured patients with a chronic, life-altering disease afford their medications.

Family Reach (973-394-1411) is providing these families with the resources they need to keep a roof over their heads, put food on the table and maintain safe, reliable access to cancer treatment.

Local Service Organizations
Community-based groups, such as local churches, synagogues, mosques, and lodges may also provide assistance for people with cancer, sometimes even if the person is not a member of that particular organization or religion.

Local service or volunteer organizations such as Catholic Charities, Jewish Social Services, the Lions Club, Lutheran Social Services, the Salvation Army, and others may offer financial assistance. Some hospitals also have private funds available for patients in need.

Some of these organizations offer grants to help cover the cost of treatment and other expenses, while others aid with specific services or products, such as travel or medications. A social worker or an Internet search can provide you with a list of organizations. Many hospitals and clinics also maintain a list of service organizations in the community.

Here are just a few that can help direct you to services in your community. The American Cancer Society (800-227-2345) and the local United Way office can also direct people to services in their community.

The Department of Social Services in your city or county may provide food, housing, and other general assistance services.

To view groups classified by specific disease type, view Cancer.net’s Cancer-Specific Resources list. Get a list of patient information resources to connect to cancer organizations nationwide. As always, be sure to talk with your healthcare team about any questions you may have about information you find.

Screening locations

Local hospitals and local prostate cancer support groups usually either offer screening or have a list of places you can go for screening. You can start by checking with your personal physician or calling your local clinic. For more comprehensive screening information be sure to visit the Education Center.

You can find a useful resource for making these decisions at the U.S. Centers for Disease Control and Prevention site.

Visit these Websites to Get your PSA Screening —
Letsgetchecked.com
Lifelinescreening.com
Healthtestingcenters.com
Prostate Conditions Education Council (PCEC)
prostateconditions.org The PCEC website provides a prostate cancer screening center locator, allowing you to find a screening center close to you.

Remember that these tests aren't a substitute for regular medical care. Let your doctor know that you've taken and online PSA test and share the results for a better understanding. For the International Prostate Cancer Foundation’s recommendation on all Men’s health screenings view the infographic here.

genetic Screening