Prostate Cancer Patient Advocacy Groups

Forming A National Collective

Within the global theme of forming a national collective four subthemes emerged: sharing common experiences and learning from each other having a united and powerful voice symbiosis and interdependence and selfdetermination and identity.

3.3.1. Sharing common experiences and learning from each other

Support group leaders described seeking common experiences and learning from and supporting each other in running support groups. Within this was the purpose to establish common practices and build sustainability. For example:

We felt that support groups ought to get together so that they can compare notes on how they operated because, in the early days, everybody operated differently. A lot was the same but you needed to get together with other people to find out the problems that they may have encountered, the difficulties sometimes in getting good guest speakers.

Linkages between groups across both states and the country more broadly were seen as a way to build sustainability into the group movement.

I could just see no future in isolated little cells who almost inevitably would have a short life and a merry one and then just fade away.

So that was the beginning of the national support group movement, that was July 2001. Now once that happened of course there was, if you like, I guess an official recognition that we were altogether and we were all working in the one direction and there was much more communication between groups through the PCFA.

Prostate Cancer Clinical Trials Consortium

The Prostate Cancer Clinical Trials Consortium is a clinical research group sponsored by the Prostate Cancer Foundation and the Department of Defense Prostate Cancer Research Program , with its Coordinating Center headquartered at Memorial Sloan Kettering Cancer Center. The PCCTC is currently composed of 15 participating clinical research sites and 32 affiliated clinical research sites.

Visit the PCCTC site for trial information: www.pcctc.org

Free Professional Support Services

CancerCare helps individuals, families, caregivers and the bereaved cope with the emotional and practical challenges of cancer. Our services include counseling, support groups, educational workshops, publications and financial assistance. All of our services are provided by professional oncology social workers and are offered completely free of charge. To learn more, visit www.cancercare.org.

CancerCare® National Office

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Where To Find A Support Group

Many hospitals, cancer centers, community groups, and schools offer cancer support groups. Here are some ways to find groups near you:

• Ask your social worker to suggest groups.
• Talk to other patients who have tried support groups.
• Do an online search for groups. Or go to the NCI database Organizations that Offer Cancer Support Services for suggestions.

Features Of Pcsgs That Positively Influence Mens Adjustment To Pca

Respondents provided ratings of seven features of PCSGs that were potentially positive influences on mens adjustment to PCa . Ratings of these features were uniformly high . All seven characteristics were identified as important benefits. While friendship was rated the lowest of the items, sharing experiences and emotional support were highlighted as the strongest factors positively influencing mens adjustment to PCa.

Positive factors how prostate cancer support groups influence mens adjustment to prostate cancer.

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Neuroendocrine Cancer Awareness Network

Our passion pays off! Thanks to the community of NET patients and caregivers that we serve, NCAN has once again been awarded top rated nonprofit organization status by greatnonprofits.org. It’s an award bestowed upon us by the community, and we’re proud to say that we’ve been honored with this award every year since 2011. This status helps bring even more credibility to our organization, which in turn helps donors and volunteers feel more confident in their choice to support us.

In addition to the NET hotline and the thousands of information packets that have been sent to patients and caregivers, the NCAN organization has produced over 60 conferences around the country.

Working To Raise Prostate Cancer Awareness: A Patient Advocates Story

Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. James E. Williams, Jr., has been a prostate cancer survivor since 1991. He started a consulting firm, Jim Williams and Associates, specializing in human resources management, prostate cancer awareness, education, and advocacy. He retired from the United States Regular Army as a full colonel.

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Bone Marrow/stem Cell Transplant Patients

These webinars are designed to help patients who’ve had a bone marrow/stem cell transplant live their best life.

Questions? Topics you’d like to see discussed? Email us at .

• Your mouth and graft-versus-host disease | Joel Epstein D.M.D., M.S.D.
• Introduction to graft-versus-host disease | Eneida R. Nemecek, M.D., M.S., M.B.A.

Upcoming Prostate Cancer Groups

Active Surveillance

Active Surveillance for low and low-intermediate risk prostate cancer presents its own challenges that are very different from other treatment protocols. This virtual group is for men and caregivers on or considering AS to treat their condition. New participants are given priority to discuss their situation.

Moderators: Joe Gallo , Ken Mason , Howard Wolinsky, Elliott Kerman, Jim Schraidt, Hugh Idstein

Low/Intermediate Risk Prostate Cancer

This group is for all men diagnosed with low or intermediate risk disease at whatever stage of treatment. We often discuss the greatest quandary faced by newly diagnosed men . treatment alternatives & side effects, with men who have experienced the range of treatments. New participants are given priority to discuss their situation. Caregivers welcome.

2nd & 4th Mondays of every month at 8pm EST/EDT

Moderators: Peter Kafka, Bill Franklin, Russ Smith& Ken Mason

High Risk/Recurrent/Advanced Men and Caregivers

This group is for men with complex disease either at diagnosis, or whose disease has recurred with or without evidence of metastasis. With men who have experienced the gamut of treatments, we discuss status, as well as new developments in treatment and technology. New participants are given priority to discuss their situation. Caregivers welcome.

Please note that occassional calendar quirks may require we shift meetings to avoid holding groups on successive nights.

1st & 3rd Mondays of every month at 8pm EST/EDT

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The Importance Of Support Groups For Prostate Cancer

When men are diagnosed with prostate cancer, they often feel isolated and alone. It can be difficult to talk about such a personal issue, even with close friends or family members. However, theres nothing wrong with seeking support from others who have similar experiences. A group like this helps you feel less alone when going through an illness or situation that seems impossible. The prostate cancer community offers a safe place for men to share their stories and learn what it takes during this difficult time in life.

Likewise, cancer support communities can be an invaluable resource for newly diagnosed patients with prostate cancer as they navigate their treatment options. These groups can also support men dealing with the recurrence of prostate cancer or the side effects of treatment.

A support group is an essential part of their life journey toward recovery for many men. Moreover, patients can find strength in numbers and receive the necessary emotional support to cope with their diagnosis. In addition, they can learn about new treatments and share tips on how to manage side effects.

What Is Prostate Cancer

Prostate cancer is a cancer that starts in the prostate. Cancer is a disease that begins in cells, which are the building blocks that make up all tissue and organs of the body, including the prostate. Normal cells grow, divide, and die on a regular schedule. Sometimes something goes wrong with this process and the cells dont die as they should. Instead, they create a growth or tumor. Tumors can be benign or malignant .

Prostate cancer can spread from the prostate to the bone, other organs, and the lymph system. When this happens, the disease is called metastatic prostate cancer. If prostate cancer spreads, or metastasizes, to the bone, you have prostate cancer cells in the bone, not bone cancer.

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Prostate Cancer Support Group

The Prostate Cancer Support Group allows patients, survivors, families and caregivers to learn more about prostate cancer, share experiences and receive support.

The group meets virtually the third Wednesday of each month at 6 PM. Facilitated by the Us TOO Prostate Cancer Education & Support Network, these interactive groups facilitate conversations to exchange information among group members assembled with the common goal of empowering each other with the knowledge that comes from experience.

Study Of Pembrolizumab Combination Therapies In Metastatic Castration

Merck is conducting this clinical trial to find out if the investigational medication pembrolizumab in combination with abiraterone and prednisone is safe and works to slow down or stop the growth of metastatic Castrate Resistant Prostate Cancer . Pembrolizumab is a type of immunotherapy, which may help the bodys immune system attack cancer cells. This trial is currently enrolling patients with mCRPC who have not received chemotherapy for mCRPC and have either not had prior second generation hormonal manipulation for mCRPC, or have previously been treated with enzalutamide for mCRPC and failed treatment or has become intolerant of the drug. Additional eligibility criteria will apply. Click here to learn more about this trial on the sponsors website.

To learn more about this study and to find out if you may be eligible, please visit:

ClinicalTrials.gov Identifier: NCT02861573

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How Is Prostate Cancer Diagnosed

Prostate cancer can only be diagnosed with a tissue sample, which is obtained through a biopsy. Once you have been diagnosed with prostate cancer, you can learn more about your disease state, including your Gleason Score or grade, which indicates the aggressiveness of the disease, and Stage, which indicates the location of the cancer cells in your body. This information will help you and your doctor work together to develop the best treatment plan for you.

Treatment options vary depending on your prostate cancer stage and how aggressive the cancer cells are.

Risk Factors Signs And Symptoms

There are several factors that can increase your risk of prostate cancer. Speak with your doctor if you believe you may be at risk for developing prostate cancer. Common risk factors include:

• Age – Most men with prostate cancer are over 65 the disease is rare in men under 45.
• Family History – A person is more likely to get prostate cancer if his father, brother or son had prostate cancer.
• Race – Prostate cancer is more common among black men than white or Hispanic/Latino men. Its least common among Asian American/Pacific Islander and American Indian/Alaska Native men.
• Prostate Changes – Men with high-grade Prostatic Intraepithelial Neoplasia , an abnormal cell condition, may be at increased risk of prostate cancer.

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A Note About Online Safety

By now, we expect most folks will have heard of Zoom bombing. Were eager to avoid this issue, and that desire is why were pursuing the workflow described above. We will be closely monitoring who we allow into our Zoom call. Were not looking to exclude folks that we dont know yet, were serious in our efforts to avoid issues like Zoom bombing. Please understand if we ask you to verify your identity.

When Should I Be Screened For Prostate Cancer

made after a consultation with your doctor. Some important factors to consider are your age, race, family history, and history of chemical exposure. Prostate cancer screening includes:

• A Prostate-Specific Antigen blood test measures the level of PSA in the blood. PSA is a substance made by the prostate. The levels of PSA in the blood can be higher in men who have prostate cancer. The PSA level may also be elevated in other conditions.
• A Digital Rectal Exam is a physical exam that is done when a doctor or nurse inserts a gloved, lubricated finger into the rectum to estimate the size of the prostate and feel for lumps or other abnormalities.

In many cases, prostate cancer stays confined to the prostate and is so slow-growing that it may never pose a serious threat to your overall health. However, some cases of prostate cancer are aggressive and may quickly spread to other organs or bones. Your treatment decisions will depend largely on what kind of prostate cancer you have and how aggressive it is. You can determine this by knowing the stage and grade of your cancer.

What should you do if you or a loved one has just been diagnosed with prostate cancer? First, take a moment to breathe. After that, your priority is to find out as much as you can about your diagnosis and work with your doctor to make a plan. Visit our Newly Diagnosed section to find tools and information to help you do this.

Learn

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Cancer Education And Support Groups

We offer patient guides, webinars, support groups and classes to help you:

• Learn about treatments such as chemotherapy and cell transplant therapy.
• Learn about living your best life after a bone marrow/stem cell transplant.
• Connect with other patients and families coping with cancer.
• Ease stress through yoga and mindfulness.

About The Support Group

In partnership with the National Alliance of State Prostate Cancer Coalitions , CancerCare is offering a 15-week online support group is for people diagnosed with prostate cancer who are currently receiving treatment. In this group led by an oncology social worker, patients give support to each other and share resources and information.

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Nervous About A Vasectomy Laughing Gas Is Now An Option

In the Community

2019 Gentlemen Stakes for Prostate Cancer

Since 2006 we have held annual fundraisers for prostate cancer awareness and research programs. Whether it’s a 5k/10k event or a celebration for our cancer survivors, we believe in giving back. These events benefit ZERO – the End of Prostate Cancer. A number of local and national businesses also sponsor the event.

The Urology Group supports organizations that promote early detection and provide support for cancer patients and their families. Learn more about prostate cancer initiatives on these websites.

Why Join A Prostate Cancer Support Group

Support groups provide people impacted by prostate cancer with an opportunity to be with others who have a common purpose. While every prostate cancer diagnosis is unique, members of support groups often have similar feelings, worries, and concerns. Finding a support group may benefit you or your loved one in many ways, including:

• Feeling less lonely or isolated
• Improving understanding of prostate cancer treatment and side effects
• Getting practical feedback about treatment options
• Talking openly and honestly about your feelings
• Improving skills to cope with challenges
• Reducing distress, depression, anxiety or fatigue
• Gaining a sense of empowerment
• Learning about education, financial assistance, and other resources

Interested in becoming a Support Group Leader? View our Leading a ZERO Us TOO Support Group sheet now!

Due to the ongoing COVID-19 pandemic, most Support Groups are meeting virtually, however, some are now meeting in person and some are using a hybrid. Please check back often as we continue to make updates!

Premier Sponsors:

Huntsville Third Thursday of the month 7:00 PM CT David McElhaney 407-341-4462

Anchorage: Weekly, Wednesday at 10:00Mike Zoske

Phoenix First Monday of the Month 7PM MSTTed Hinderman 480-363-0204

State of CA only: 3rd Saturday of month at 10:30am PT men and caregiversKevin Axelrad 310-393-2186

State of CA only: 2nd and 4th Wed of Month at 6:30pm PT men onlyPhil Dipaola 818-618-7700

Las Vegas: times vary

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American Association For Cancer Research

The AACR is the oldest and largest scientific organization in the world focused on every aspect of high-quality, innovative cancer research. The mission of the AACR is to prevent and cure cancer through research, education, communication, and collaboration.215.440.9300 or toll free 866.423.3965

571.483.1780 888.651.3038212.226.5525

Is A Support Group Right For Me

Before joining a support group, you may want to ask yourself if you’re comfortable talking about personal issues. You can also think about what you hope to gain by joining one. A support group may not be right for everyone. Some people don’t like to hear about others’ problems. And some find that their need for a support group changes over time.

If you have a choice of support groups, visit a few and see what they are like. See which ones make sense for you. Although many groups are free, some charge a small fee. Find out if your health insurance pays for support groups.

If you’re thinking about joining a support group, here are some questions you may want to ask the group’s contact person:

• How large is the group?
• Who attends ?
• How long are the meetings?
• How often does the group meet?
• How long has the group been together?
• Who leads the meetings – a professional or a survivor?
• What is the format of the meetings?
• Is the main purpose to share feelings, or do people also offer tips to solve common problems?
• If I go, can I just sit and listen?

Support groups vary greatly, and if you have one bad experience, it doesn’t mean these groups aren’t a good option for you. You may also want to find another cancer survivor with whom you can discuss your cancer experience. Many organizations can pair you with someone who had your type of cancer and is close to your age and background.

• January 24, 2019

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Facebook Groups Lead By The Prostate Cancer Foundation

The offer patients, families, and caregivers a place to find support and information. There are many different types of groups available to find one right for you. Some groups are large online communities, while others are facilitated by a mental health professional, a person with cancer, or a medical expert. Whatever your needs, there is a group out there for you.