Mesothelioma Support Groups

People who are diagnosed with mesothelioma – or any other type of cancer – frequently experience feelings of fear and of being overwhelmed and alone. They often wonder how they will cope with the challenges that lie ahead of them, and it can be difficult to discuss these fears with the people closest to them.

This is completely natural. The fact is however that you are not alone, and there are many others out there who are sharing the same experience – and not o few who have either survived it, or are living with it.

What Is a Cancer Support Group?

A cancer support group consists of people suffering from similar conditions. There are cancer support groups in nearly every city and community as well as on the World Wide Web. These support groups meet regularly in order to discuss their fears and concerns about the disease, its treatments and the effects on the members and their families, as well as coping strategies.

Why Should I Join One?

Your oncologist will tell you that dealing effectively with the emotional and psychological aspects of their condition is as important to successful treatment as dealing with the medical and physical side. S/he may even assign you to a support group as part of your treatment plan.

A cancer support group can provide a safe environment where cancer patients and survivors alike can speak candidly about their fears, difficulties and other challenges involved. Members of support groups are often able to educate one another on dealing with emotional issues as well as managing side effects and living as normally as possible despite the disease.

When one is diagnosed with cancer, it has a tremendous affect on family and friends as well. Family life can suffer major disruptions – not only because of treatment schedules, but also the tremendous financial burden placed on them by the only industrialized nation (the U.S.) whose government refuses to extend the right of health care to all of its citizens as it continues to protect the interests of the wealthy private insurers to whom profitability, stock price, large CEO salaries and shareholder dividends far outweigh human needs.

These are the issues frequently discussed among members of cancer support groups. In fact, there are support groups especially for the friends and families of cancer patients. However, virtually all cancer support groups encourage participation by friends and family members.

Where To Find Support Groups

As cancer now affects one out of every four people in the U.S., there is no shortage of organizations offering support groups for cancer patients. If your oncologist has not already directed you to one (such groups are often sponsored through hospitals), a good place to start is online at the National Cancer Institute website.  This organization offers a fact sheet which can be downloaded for free at http://www.cancer.gov/cancertopics/factsheet/support/organizations. You can also order it from the Cancer Information Service at 1 (800) 4CANCER.

As mentioned earlier, your oncologist can refer you to a cancer support group, and information is usually available through hospital staff members such as nurses and social workers. In fact, most hospitals maintain a social services department where you can find details on groups in your community such as when and where meetings are held, the size of the group (some prefer the relative anonymity of a larger group, while others may benefit from the intimacy of a smaller one), and the specific issues discussed.

Types of Support Groups

You will find many different types of cancer support groups available. Many groups have members with all types of cancer, while others focus around a particular form of the disease, such as mesothelioma, or breast or prostate cancer. There are groups for the general population as well as those for people of a specific age group or gender. For example, support groups for victims of childhood cancer or teens are common. A particular group may discuss all aspects of the disease, while others focus on specific topics such as treatment issues, or maintaining a normal life while dealing with cancer.

Sadness and grief are a natural part of suffering from a potentially fatal disease. Therapy groups, often facilitated by mental health professionals, can be of great help in this regard. If your family and friends are participating in a support group as well, you may wish to choose a group in which cancer patients meet separately from friends and family members, or one in which everyone meets together.

Finally, there are support groups online that meet over the Internet. Meetings take place in virtual “chat rooms,” through electronic bulletin boards and moderated discussions, and via e-mail. The advantage to online support groups is that they are available twenty-four hours a day, seven days a week. They are also ideal for cancer patients who have difficulties traveling.

There are two distinct disadvantages to online support groups. One is that it is often a poor substitute for genuine human contact. Even if this is not a problem for someone, the fact remains that the Internet is a place where people are not always who they seem to be. Any information you receive online should be discussed with your oncologist.

It is a good idea to visit a few different groups in order to find one with which you are most comfortable. Also be advised that while most groups accept members free of charge, some require the payment of a small fee, which typically goes toward rental of the meeting space or facilitator remuneration (1).

Finding a Local Support Group

Here is a partial listing of cancer support groups throughout the U.S., listed alphabetically by state and city. The oncology department of most local hospitals and university medical centers can also refer you to a support group.

CITY AND STATE

SUPPORT GROUP NAME

CONTACT INFO

Tucson, AZ

Cancer Care of Southern Arizona

Lynn Johnson
520.248.9005

Tuscon, AZ

Sunstone Resource Center at Tucson Medical Center

Hellene Rothstein
520.296.3065

Fontana, CA

Kaiser Permanente Fontana Medical Center

Sandy Luna
909.427.5495

Los Angeles, CA

Jonsson Comprehensive Cancer Center

Tom Pier, MSW
310.794.6644

Newport Beach, CA

Hoag Cancer Center

Sian Wing
949.764.6889

Orange, CA

St. Joseph Hospital Regional Cancer Center

Pam Matten, RN
714.771.8254

Rancho Mirage, CA

Eisenhower Lucy Curci Cancer Center

Pam van der Nagel
760.674.3602

Redondo Beach, CA

The Wellness Community

Tom May
310.376.3550

Sacramento, CA

UC Davis Medical Center

General Information
916.734.8299

San Francisco

UC San Francisco Comprehensive Cancer Center

Barbara Buckley
415.885.7623

Walnut Creek, CA

The Wellness Community

Judy Blazin
925.933.0107

Denver, CO

Rocky Mountain Cancer Centers

Susan Ash-Lee
303.285.5076

New Haven, CT

McGivney Center for Cancer Care

Rosemary Spinelli-Reyes
203.789.3946

Norwalk, CT

Cancer Care of Connecticut

Sandy Tripoli
203.854.9911

Newark, DE

Helen F. Graham Cancer Center

General Information
302.623.4500

Ft. Lauderdale, FL

Gilda’s Club South Florida

Karen Hansen
954.763.6776

Safety Harbor, FL

Mease Countryside Hospital

General Information
727.461.8904

Sarasota, FL

The Wellness Community

Dr. John Kleinbaum
941.921.5539

Tampa, FL

Moffitt Cancer Center

Cynthia Shimizu
813.979.3990

Atlanta, GA

St. Joseph’s Cancer Center

Tom Simon
770.451.4749

Atlanta, GA

St. Joseph’s Cancer Center

Renee Sevy
404.851.5051

Savannah, GA

Summit Cancer Care

Barbara McLaughlin
912.354.6187

Evanston, IL

Evanston Hospital

General Information
847.570.1663

Hinsdale, IL

Wellness House

Marnie McHale
630.654.5108

Maywood, IL

Cardinal Bernardin Cancer Center

Jenny Abrams
708.327.2042

Springfield, IL

Simmons Cooper Cancer Institute

Beth Phelps, MS, APN-C
217.545.7806

Winfield, IL

Central DuPage Hospital

Pat Mellinger
630.933.5286

Fort Wayne, IN

Women’s Cancer Center

Linda Jordan
219.435.7959

Pikeville, KY

Pikeville Methodist Hospital

Shirley Coleman, RN
606.218.4992

South Portland, ME

The Cancer Community Center

Chris Robbins, RN
207.774.2200

Baltimore, MD

Hopewell Cancer Support

Carole Sharp
410.832.2719

Silver Springs, MD

Holy Cross Hospital

Joyce Wonders
310.754.7757

Newton, MA

The Wellness Community of Greater Boston

Abe Feingold
617.332.1919

Detroit, MI

Karmanos Cancer Institute Patient & Family Services

General Information
313.576.9280

Royal Oak, MI

Gilda’s Club

Joe Perry
248.577.0800

Minneapolis, MN

Women’s Cancer Resource Center

Lisa Simer
612.822.4846

St. Paul, MN

Regions Hospital

Scott Cruise, LICSW
651.254.9267

St. Paul, MN

Regions Hospital

Connie Berchem
651.464.3936

St. Paul, MN

United Hospital

Leona Stevens, RN
651.241.8328

Robbinsdale, MN

North Memorial Medical Center

Karen Assel, BSN, RN
763.520.3963

Columbia, MO

Reynolds Alumni Center at University of Missouri

Christine Chang
573.882.2587

Morristown, NJ

Morristown Memorial Hospital Carol G. Simon Cancer Ctr.

Catherine Owens, MSW
973.971.5169

Mount Holly, NJ

Fox Chase Virtua Health at Virtual Memorial Hospital

Doug Marshall
888.847.8823

Vorhees, NJ

Cooper University Hospital (CINJ at Cooper)

General Information
800.8COOPER

New York City, NY

Gilda’s Club

General Information
212.647.9700

New York City, NY

Memorial Sloane Kettering Discussion Group

Elizabeth Peabody
212.639.3917

New York City, NY

Memorial Sloan Kettering Educational Sessions

Barbara Massina, LCSW
212.717.3530

New York City, NY

MSKCC Journey to "Normal" - Psychological Adjustment

Jack Burkhalter, PhD
212.583.3013

New York City, NY

NYU Cancer Institute

Leora Lowenthal, LCSW
212.731.5141

New York City, NY

New York Hospital

Maria Carrera, NP
212.746.5982

Woobury, NY

CancerCare, Long Island

Win Boerkel
516.364.8130

Greenville, NC

American Cancer Society McConnell-Raab Hope Lodge

Teresa L. Parent, RN
252.744.1789

Winston-Salem, NC

Cancer Services

Nedra
336.760.9983

Blue Ash, OH

Lynn Stern Center

General Information
513.791.4060

Cleveland, OH

The Cleveland Clinic

Nancy Fenner
216.444.6888

Columbus, OH

The Wellness Community

Tom May
614.791.9510

Toledo, OH

The Victory Center

Kelly S. Brooks, RN
419.531.7600

Eugene, OR

Cancer Care Resources

Pat Greene
541.405.1693

Philadelphia, PA

The Wellness Community

Kathleen Coyle, MSW
215.879.7733

Pittsburgh, PA

UOP  Medical Center Shadyside Hospital

Bonnie Shields
412.622.1212

Nashville, TN

Gilda’s Club

General Information
615.329.1124

Houston, TX

M.D. Anderson Cancer Center

Mary Ann Bassham
713.792.7149

Houston, TX

M.D. Anderson Cancer Center

Annemarie Redelmeier
713.792.0770

San Antonio

Brooke Army Medical Center

Don Laughery
830.639.4994

Falls Church, VA

Life With Cancer Family Center

Oncology Counselors
703.776.2841

Washington DC

Lombardi Cancer Center at Georgetown U. Hospital

Mary Kardauskas
202.444.1684

Seattle, WA

Northwest Hospital

Cathy Bjornstaard, MA
206.297.2500

Madison, WI

University of Wisconsin Cancer Center

Thersea Woods, PhD
608.262.7515

 

'Mesothelioma Support Groups' Resources:
  1. National Cancer Institute. “Taking Time: Support for People With Cancer”. Cancer.gov.
  2. Lung Cancer Alliance. “Support Groups”. Alcase.org.
  3. Lung Cancer Online. “Support Groups (Face-to-Face)”. LungCancerOnline.org.
    Accessed: July 10, 2007.