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Non-Malignant Brain Tumor Support Group in New York City

Support Group Information

Please join us for a FREE support group that can help you understand how to navigate treatment options and provide strategies for dealing with life changes due to nonmalignant brain tumors. The group provides outreach to the newly-diagnosed through our network of doctors, hospitals, and related organizations.

Where: Paul, Weiss, Rivkind, Wharton & Garrison LLP
Conference Room 2905 on the 29th Floor
1285 Avenue of the Americas – UBS Building at the corner of 51st Street
New York, NY 10019-6064
Click here for a map and directions
(Note: you must present photo ID to lobby security)

When: 5:00 – 6:30 PM on:

February 4, 2014
February 18, 2014
March 4, 2014
March 18, 2014
April 8, 2014
April 29, 2014
May 13, 2014
May 27, 2014
June 10, 2014
June 24, 2014

Note: Registration is required. To register, please contact: Rochelle Guttman at 718.258.7100 or rochelle.guttman@verizon.net

More information about the group from facilitator Rochelle Guttman:

Click here to read Rochelle’s Full Bio and Brain Tumor Story

All of us who have been diagnosed with a brain tumor can recall vividly the terror and dread we experienced at hearing the words “you have a brain tumor.” In 1994 when I was diagnosed with a meningioma and needed to have surgery immediately, I could not fathom going through this ordeal and coming out at the other side. I knew of no-one who had had brain surgery. While I was blessed to have a brilliant and skilled brain surgeon, who explained the technical aspects of the surgery and what would happen if I chose not to go that route, (as he succinctly stated “paralysis and then death”), there was no addressing the emotional impact this had on me as a person.

At my post surgery visit I mustered up my courage and told him how it was essential to be aware there was a person there and deal with the feelings and my surgeon (not an uncaring person) candidly admitted that there was indeed a need to take the whole person into account but this was not his forte. I remain eternally grateful for his expertise as a surgeon. Yet this made me aware of the need for a forum to address the emotional and psychological needs of the patient pre and post treatment. So my decision to form and facilitate a support group for people with non-malignant brain tumors has its genesis in my own experience of recognizing the void that existed in helping patients navigate their brain tumor journey.

Our group has been in existence for seven years. We not only offer concrete, emotional support and resources to people with non-malignant brain tumors, but members accompany each other to medical visits and stand-in for family when there is none. The group as so many have stated has become a family. The Non-Malignant Brain Tumor Support Group (NMBTSG) is delighted to become part of the Voices Against Brain Cancer family.

What it Means to be Member of NMBT:

“All of uswho have been diagnosed can recall vividly the terror and dreadwe experienced at hearing the words “you have a brain tumor.” My experience made me aware of the need for a forum to address the emotional and psychological needs of the patient throughout treatment. Our group is delighted to become part of the VABC family.”
Rochelle Guttman, L.C.S.W., Facilitator of Non-Malignant Brain Tumor Support Group

“In finding this group I feel I have taken the first step in my journey of healing.”
—new member of the Non-Malignant Brain Tumor Support Group

“Now we can give more help to more people.”
Neale Albert after learning the group had partnered with VABC

“NMBT is a place to learn, to laugh and know we are not alone.”
Mark Kupferberg

Two members of the group share experiences of having to take care of an elderly disabled parent while dealing with their brain tumor. A, another member of the group states this is the one place she wants to be and feels understood.
–Pat Webb

“Our Non-Malignant Brain Tumor Support Group has been my family, my heart, my future. They’ve been my answer to so many many questions I’ve struggled with through out my meningioma journey. I found the group shortly after my diagnosis and my “new family” offered me support and help finding answers to the multitude of questions someone with a newly diagnosed brain tumor is faced with. When the treatment plans offered to me were sometimes conflicting or just confusing, I was able to talk these options out with the group and find answers that were right for me. They showed me how to reach for a goal during my recovery and how to help the next new member joining our group find their way. We might accompany that member to a doctor’s consult when they had no one else to take notes and support them during these sometimes scary days. Or we were there to just listen. Sometimes that was the best help anyone could offer…a willing and knowledgeable listener; someone who has walked-the-walk along the brain tumor journey. A family of friends who knew what was ahead…they were there for me.”

“Our Non-Malignant Brain Tumor Support Group has been my family, my heart, my future. They’ve been my answer to so many questions I’ve struggled with throughout my meningioma journey. I found the group shortly after my diagnosis and my “new family” offered me support and help finding answers to the multitude of questions someone with a newly diagnosed brain tumor is faced with. When the treatment plans offered to me were sometimes conflicting or just confusing, I was able to talk these options out with the group and find answers that were right for me. They showed me how to reach for a goal during my recovery and how to help the next new member joining our group find their way. We might accompany that member to a doctor’s consult when they had no one else to take notes and support them during these sometimes scary days. Or we were there to just listen. Sometimes that was the best help anyone could offer…a willing and knowledgeable listener; someone who has walked-the-walk along the brain tumor journey. A family of friends who knew what was ahead…they were there for me.”

The ethos of The Non-Malignant Brain Tumor Support Group is that we can triumph over medical and emotional problems.

By becoming part of the VABC family since 2010, our group is now able to reach many more people with non-malignant brain tumors who will benefit from our support.

A. commented she was depressed at not working because of the physical stamina her previous job required. Another group member offered that she learned not to compare herself to her past self. She shared with the group programs that help the disabled. P stated that he too experienced a decrease in his physical stamina, which made A feel understood. P said “no-one except the group really understands.”

S, a young woman in her thirties, who is a mother of a 4 year old girl was diagnosed with multiple tumors. After two years of monitoring her tumors, it was determined that they grew and she would need to have surgery. During the course of the two years S. was able to get input from the group in the form of medical referrals, sorting out her options, help in navigating the insurance maize and emotional support and validation. A member of the group accompanied her to the medical consultations and two people from the group were with her in July 2011 when she had the multiple surgeries. S said ” It really helped being in the NMBT Support Group. They understand in a way family cannot.” S continues to attend the group sometimes accompanied by her daughter who has surrogate aunties and uncles in the group members.

G, a new member who had recently been diagnosed with a brain tumor and needed to have surgery said “It’s reassuring to see others have gone through this and lead normal lives.” Another member expressed the value of the NMBT Support in helping people pre and post-surgery.

B described feeling altered post brain tumor surgery. In addition to physical changes such as fatigue and double vision, he’s learned that it’s okay to relinquish control in certain situation. He said : “This is the only place where I can talk about my feelings and feel that people really care and want to know how I feel.”

In this session N who is one month post-surgery talked about how hopeful and inspired she felt by L who talked about making lemonades out of lemons by teaching movement to handicapped people. Prior to her brain tumor, L had been a dancer, but now had partial paralysis in one foot. Nevertheless, she found a way to combine her passion for dance and helping others at the same time. N had been a singer prior to her surgery and worried that she wouldn’t be able to sing because her voice didn’t sound the same to her. After hearing L’s story, she said she resonated with this and now felt optimistic that she would be able to adapt and continue singing.

At a recent meeting, a group member, scheduled for surgery the following week, said tearfully, “I couldn’t have made it without the support of this group: you are my family.” A member of the group was with her during her surgery.

One member of the group who was terrified of having surgery, and wouldn’t even entertain the idea of consulting with a surgeon was able, with the help and encouragement of the group to proceed with her surgery. She attended the meeting four weeks post- surgery and is doing very well. She is now eager to help others recently diagnosed and has become an active advocate for newly diagnosed people in the group.

A woman in her early 30′s who is a mother of two young children and found the NMBT Group shortly after her surgery and radiation spoke about how she feels safe talking about her feelings, her fears, without having to worry about frightening her loved ones.. She said ” here I am able to be myself without having to worry about upsetting my family and friends: It’s the one place I feel understood.”

A newly diagnosed man in his late 20′s said ” when I look at all of you I feel hopeful about coming through this and leading a productive life”.

Guest Speakers

Dr. Steven Pacia was a guest speaker at the October 12th meeting. Dr. Pacia is Director of Neurology at Lenox Hill Hospital and Associate Professor of Neurology at NYU Comprehensive Epilepsy Center. He addressed the management and treatment of seizures in patients with malignant and non-malignant brain tumors. Dr. Pacia is that rare Doctor who is not only brilliant in his field but has a way of communicating information so that it is clear and interesting to the lay person. Although his specialty is seizures, he covers a range of issues affecting the person with a brain tumor.

There was a brief overview of seizures and the state of the art treatment, followed by Q & A period.

Check back on this page for more announcements about special guest speakers at our suppor group!

More Information

Click here to visit the support group’s website

 

 

 

 
Voices Against Brain Cancer is a not-for-profit public charity recognized by the IRS under 501 (c) (3)