Support and Resources

Support

Living with a serious disease such as cancer is not easy. You may worry about caring for your family, keeping your job, or continuing your daily activities. Concerns about treatments and managing side effects, hospital stays and medical bills are also common. Doctors, nurses, case managers and other members of the health care team can answer questions about treatment, working and other activities.

Meeting with a social worker, counselor or member of the clergy can be helpful to those who want to talk about their feelings or discuss their concerns. Often, a social worker can suggest resources for financial aid, transportation, home care or emotional support.

Support Groups

Support groups can also help. In these groups, patients or their family members meet with other patients or their families to share what they have learned about coping with the disease and the effects of treatment. Groups may offer support in person, over the phone or on the Internet.

The Western New York Brain Tumor Support Group meets on the first Wednesday of each month in Orchard Park and the 3rd Tuesday of each month in Amherst. Call Cherie Hodgsen at: 824-1761.

Please check with our Social Work department (716) 845-8022 for a listing of support groups that may interest you.

Social Work Department

Licensed Medical/Clinical Social Workers are skilled in assisting patients and families in addressing their social, psychological, emotional and practical concerns. Services range from individual and group support to providing referrals for services in the community. 

A Social Worker is assigned to each clinical department and will act as your personal liaison with the community, home and hospital. They will work with you while you are in the hospital and while you recover at home.

Contact the Social Work department at (716) 845-8022 for more information on their services.

Psychosocial Oncology Department

Psychologists are available to help you and your family cope with any emotional issues you may experience. Individual, family and group treatment, with a focus on stress management is offered. 

Ask your doctor or nurse for a referral to a psychologist at any time during your treatment.

Case Manager

Case Managers are registered professional nurses who are available to assist you and your family in planning and arranging nursing care at home if requested by your physician.

Skilled nursing care needs may include wound care, catheter care, ostomy care and physical therapy.

Contact the Social Work Department (716) 845-8022 for any questions you have regarding Case Management.  The Case Manager for the WNY Brain Tumor Center is Sylvia Dlugokinski-Plenz.

Pastoral Care

Hospital chaplains of all faiths are available for bedside visitation, counsel, consultation and spiritual guidance. Arrangements for pastoral care can be made by you or your family through the nursing staff. Your own clergy is welcome at anytime.

There is a non-denominational chapel located on the 1^st floor of the hospital and is open to patients, family and staff at all times for meditation and prayer.

If you have any questions or would like to speak to a chaplain, please call the Pastoral Care Department at (716) 845-8051.

Community Cancer Resource Center (CCRC)

At the CCRC, located on the first floor of the hospital, trained information specialists help cancer patients, their families and friends, and the general public to properly access, correctly interpret, and effectively personalize the wealth of cancer information available. The CCRC’s clearinghouse of cancer information includes:

• support programs (including yoga, mediation, and teleconferences)
• assistance with using the Internet
• the Wig, Scarf and Hat Boutique
• a lending library of books, videotapes and audio cassettes
• free brochures and gifts

To learn more about CCRC services, stop by the CCRC, or call (716) 845 - 8659 or toll free 1-877-ASK-RPCI (1-877-275-7724).

Roswell Park Website

The Internet has become a valuable tool for patients. By visiting Roswell Park’s website at www.roswellpark.org you can find important information on Roswell Park and its services, online forms and applications, phone numbers, and email addresses.

The Roswell Park website is also the home of our clinical trials search tool. You can find out what clinical trials are being held at Roswell by going to our homepage at www.roswellpark.org and clicking on Research and then Clinical Trials.

Roswell Park Neuro-oncology Webpage 

From our webpage at http://www.roswellpark.org/document_4354.html you can learn more about the medical team members, treatment options, the latest research, and s description of the different types of brain tumors. You will also fin links for other online resources and a listing of publications for additional information.

NCI Cancer Information Service (CIS)

The National Cancer Institute's Cancer Information Service provides the latest and most accurate cancer information to patients, their families, the public, and health professionals. The CIS provides personalized, confidential responses to specific questions about cancer.

• By telephone: U.S. residents may call the CIS toll free at 1–800–4–CANCER (1–800–422–6237). CIS information specialists answer calls Monday through Friday from 9:00 a.m. to 4:30 p.m. local time, in English or Spanish. Callers with TTY equipment may call 1–800–332–8615. Callers also have the option of listening to recorded information about cancer 24 hours a day, 7 days a week.
• Online: CIS information specialists also offer online assistance in English Monday through Friday from 9:00 a.m. to 10:00 p.m. Eastern Time through the LiveHelp link at http://cancer.gov/ on the Internet.
• NCI Website: http://cancer.gov
  The NCI's Cancer.gov™ Web site offers current information on cancer prevention, screening, diagnosis, treatment, genetics, supportive care, and ongoing clinical trials. It has information about NCI's research programs and funding opportunities, cancer statistics, and the NCI itself.

American Cancer Society

American Cancer Society
Western NY Region Office
101 John James Audubon Pkwy
Amherst NY 14228
(716) 689-6981

The American Cancer Society is a nationwide community-based voluntary health organization dedicated to eliminating cancer through research, education, advocacy and service. Their local office and services for cancer patients and their families include:

• Support groups for general cancer, laryngectomy patients and breast and prostate cancers
• Hope Lodge: Provides patients with free, comfortable and safe housing while they receive treatment. For more information call Hope Lodge at (716) 883-1177.
• Look Good/Feel Better Program: A monthly, hands-on workshop for cancer patients whose treatments have caused or may cause changes in their appearance. Health, cosmetic and beauty experts offer practical tips on skin and nail care, hair care, wigs, accessories and make-up. Co-sponsored by The American Cancer Society, the National Cosmetology Association, the Cosmetic, Toiletry and Fragrance Association and Roswell Park Cancer Institute. For information, call the Community Cancer Resource Center at (716) 845-8659.
• Road to Recovery: Transportation for ambulatory cancer patients to and from treatment

Additional Resources

For more information about brain tumors:

American Brain Tumor Association:  (800) 886-2282      www.abta.org Provides written materials about brain tumors, treatment, resources, newsletter, and support groups.

Brain Tumor Society (800) 770-8287. Provides information for patients and families, educational materials, telephone network, and support groups.

National Brain Tumor Foundation 800-934-2873 www.braintumor.org Provides informational materials for patients and families coping with a brain tumor diagnosis. Also offers support groups, and “Ask the Nurse” informational sessions.

David Bailey Brain tumor survivor, singer, and songwriter. Visit his website at www.davidmbailey.com

Brain Tumor Support Group of Western New York: A support group run by brain tumor patients and families. The group meets on the first Wednesday of the month. For more information, contact Cherie Hodgson at (716) 824-1761.

Cure Magazine: To obtain a free subscription to a magazine about cancer updates, research, and education go to www.curetoday.com

Driving Evaluation Through DeGraff Hospital, Rochester Rehab Services offers driver evaluation services. Call 877-823-7483.

Erie County Caregiver Coalition   www.eriecountycaregiver.org The mission of the ECCC is to promote community awareness, sensitivity to and action around caregiving issues. Visit their website for links to area services.

Fertile Hope www.fertilehope.com Provides reproductive information for cancer survivors.

Reproductive Concerns: For information on sperm banking and other fertility issues, in the Buffalo area, contact Dr. Bhakoo at 4500 Main St, Snyder, NY, (716) 839-5198

Hope Lodge: Located at 197 Summer Street in Buffalo, NY the Hope Lodge offers overnight accommodations for cancer patients and their families. For more information call (716) 882-9244.

Kevin Guest House: Located near the hospital, the Kevin Guest House offers Inexpensive lodging for families. Call (716) 882-1818 for more information or reservations.

Ronald Mc Donald House: Located in a 107 year old mansion in a beautiful residential neighborhood in Buffalo, NY, the Ronald McDonald house provides safe, comfortable and affordable lodging to families of pediatric patients receiving treatment at Roswell Park. Please call (716) 883-1177 for more information.

Doubletree Club Hotel: A hotel adjacent to Roswell Park (it can be accessed from the 1^st floor of the main hospital), the Doubletree is a member of the Hilton chain and offers comfortable, convenient rooms for Roswell Park patients and their families. Please call 877-633-4667 for information and reservations.

Hospice: Hospice services are available to provide support and palliative care services to patient and caregivers coping with a life limiting illness. You may obtain more information about services in your community by calling the Social Work Department at (716) 845-8022.

Life Transitions Center offers support groups for children, teens, and adults, counseling, and education for patients with a life threatening illness and their families. For more information, please call (716) 836-6460.

National Coalition for Cancer Survivorship: www.canceradvocacy.org Provides information on health insurance, employment and financial assistance.

National Family Caregivers Association: www.nfcacares.org Offers education, support, and resources for family caregivers.