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Sep 19, 2014 · 8 Replies

Groups offer support for brain tumor survivors

By Sheryl M Ness, MA, RN, Manager, Cancer Education Program @smness

Hearing that you have a diagnosis of a brain tumor is a life changing event. Patients range from young children to adolescents and adults. It's important to find the information, resources and support you and your family and friends need to navigate the journey through treatment and recovery.

There are many different types of brain tumors, all with different treatment recommendations and prognosis. Finding information specific to your brain tumor type is important as you learn about your diagnosis. I'd like to feature a few local and national support organizations that can help you along the way.

  • If you're in Minnesota, you may want to connect with Brains Together for a Cure. Its mission is to promote awareness of brain tumors and the need for effective treatments. It offers support for research, information, resources and a local support group for survivors and their families. To learn more about Brains Together for a Cure, visit http://www.brainstogetherforacure.org or email info@brainstogetherforacure.org.
  • The Sontag Foundation was started by the Sontag family in northeast Florida. They wanted to make a difference in the lives of those affected by brain cancer and rheumatoid arthritis through the power of medical research. The foundation provides funding to support community programs as well as research grants that help scientists make new discoveries for treating brain tumors and rheumatoid arthritis. The foundation offers a local support group for brain tumor patients and their families in Jacksonville. For more information, visit http://www.sontagfoundation.com.
  • Founded in 1973, the American Brain Tumor Association (ABTA) was the first national nonprofit organization dedicated solely to brain tumors. ABTA provides comprehensive resources that support the complex needs of brain tumor patients and caregivers. It provides vital funding of research to support the discovery of new breakthroughs in brain tumor diagnosis, treatment and care. Families of patients who are children and adolescents can find support through updates on the ABTA website (www.abta.org) as well as by calling their CareLine at 800-886-ABTA (2282) or emailing abtacares@abta.org.

Are you a brain cancer survivor? What support and resources did you find helpful?

Tags: brain tumor, Support Groups, Cancer, survivor, survivorship, Living With Cancer, Sheryl Ness, Sontag Foundation, Brains Together for a Cure

ben franko likes this
audrapopp

Posted by @audrapopp, Wed, Mar 23 at 4:16pm CDT

I have been going to the monthly support group Brains Together For a Cure (BTFC) in Rochester, MN and have found it extremely beneficial. They always try to have one of the Mayo neuro oncology physicians there, also nursing staff from the department. We not only discuss current treatment options but it's an open platform for patients and caregivers to have a chance to express any concerns they are having. Whatever question or concern you have there is likely someone there that has "been there, done that." Whether you are recently diagnosed or 15 years out like I was before I joined...I would strongly recommend joining a support group. This one meets at Hope Lodge, 3rd Saturday of every month from 10-11:30.

user_che69bc66

Posted by @user_che69bc66, Fri, Jun 24 at 1:14pm CDT

Wish I had known. I flew to Mayo from Tucson, Az and spent a month in town, had three brain surgeries, finally completing the measles virus injection. I actually flew home on the 18th of June (3rd Saturday) and certainly would have attended the group that day before my flight around 645 pm. In Tucson there are very few brain cancer survivors so I have not found a group other than a generic terminal disease support through Tu Nidito. it would likely be helpful to share with brain cancer survivors.

colleenyoung

Posted by @colleenyoung, Fri, Jun 24 at 3:18pm CDT

Welcome to Connect @user_che69bc66. While you didn't hear about the in-person support group while you were in Rochester, I'm glad that you found us here on Connect - a virtual support group. I'd be happy to introduce you to a some of the other members sharing in the Brain Tumor group. For example, meet @robinjenkins70 @neffjsn @dmedina71 @dailychronicsupportgroup and @shellsk24

@user_che69bc66 - why don't you tell us a bit more about yourself. What type of brain tumor do you have? How are you doing today?

Belinda likes this
user_che69bc66

Posted by @user_che69bc66, Fri, Jun 24 at 5:36pm CDT

Hello. I am a 57 year old Internal Medicine doctor for the past 30 years. My first cancer encounter began Christmas 2013 when I found a mass in my right breast. January surgery/MRI and pathology diagnosed stage 2 infiltrating ductal carcinoma. I completed standard IV chemo and radiation my therapy. This all went smoothly. I continued Arimidex therapy.

As my 2 daughters were graduating high school and planning college at Univ of AZ in Tucson, I decided to relocate there as well. I lined up a great Hospitalist job and found a fixer-upper 1950's home. The owners carried my loan and I began looking for general contractors for the renovation. It was very exciting since Tucson is where I and my girls were born and raised until 2007.

On May 17, 2015, I was going to yard sales with my girls and their boyfriends. I recall a very nice family breakfast and finding a couch for my youngest's first apartment. The next memory is wakening incubated in a Tucson hospital ICU. I was told that I had experienced a grand mal seizure caused by a brain tumor n my right frontal lobe. Neurosurgery performed removal of the tumor, proven to be a high grade Glioblastoma STAGE IV. Glade like wafers were placed. I completed oral chemo and radiation therapy with only some short term memory issues. My follow up scans actually improved till this March 2016. In the meantime, I had contacted and spoke with Dr. Buckner at Mayo regarding the measles study and Dr. Friedman at Duke regarding the Polio study. The measles study was the only one for which. I could qualify so I set out for Rochester May 30th. After 3 brain surgeries, I finally am completely enrolled and active in the measles clinical trial.

Needless to say, I am homesick and fatigued. As of tomorrow, I return for follow up June 28th with the clinical trial research team. Home bound the 29th. Whew.

Edited: 06/24/2016 @ 10:59pm

Dawn, Mentor likes this
dawn_giacabazi

Posted by @dawn_giacabazi, Wed, Jun 29 at 11:01pm CDT

So encouraging to hear you will be returning home. Your sacrifices will help many many people in the future. For that I thank you. Pray you have safe travels and much needed rest.

Belinda likes this
user_che69bc66

Posted by @user_che69bc66, Thu, Jul 7 at 1:08am CDT

It is wonderful to be home. I have 2 wonderful cats, a miniature horse colt named Toby and 2 daughters. I love being home and sleeping in my own bed. I also attend a Christian church with my brother and his wife. This has reconnected my with God and Jesus. I find my faith strength is directiy related to my level of happiness and autonomy. The bible provides me ways to enjoy my life and find purpose.

I am headed back to Rochester for MRI, labs and consult follow ups on July11 thru 13th. I am certainly interested in being an advocate for any cancer patient and/or family member.

Dawn, Mentor likes this
dawn_giacabazi

Posted by @dawn_giacabazi, Thu, Jul 7 at 4:59am CDT

God has certainly been my strength when I am weak & when i am strong. Many prayers for you now and your upcoming travels & tests. 🙂

user_che69bc66

Posted by @user_che69bc66, Fri, Aug 5 at 11:02am CDT

Well, I'm in Tucson. I am 7.5 weeks into the oncolytic measles study. I still feel great. Been off temodar since late April and only take one seizure med instead of 2. My 4 week post op followup was awesome. I flew to Rochester and really enjoyed seeing my team there. The Aspen Suites staff were also delightful (I spent nearly 6 weeks there in June). Energy and mood are nicely stabilizing. I also stopped the Optune, so finally am growing hair. Amazing how hair is a mood lifter and helps you feel more human.
The heat in Arizona is tough, but I grew up here, so I actually like it.
God is still my rock along with my family.
Days are busy and financial challenges never seem to stop coming through the door. My greatest challenge is trying to stay organized and focused. As a doctor and type A personality, I've always been able to focus and finish projects of any kind. Since donating part of my brain and radiating the rest, focus and finish are very difficult and frustrating. My 21 year old daughter seems always there to remind me how to do everything....gotta love kids.
I'm actually looking to see if I can find or create a job as a physician patient advocate. Maybe the Mayo Cancer Center would be interested.
My family thinks I need to travel for my bucket list. However, as some other cancer patients may appreciate, my joy is being in my home surrounded by familiar things and enjoying the skyscape of Tucson at night. I'd love to get to the Oregon coast this fall....we'll see if the budget allows.
I will be seen at Phoenix/Scottsdale Mayo in 2 weeks. Hope it is not 110 degrees or hotter.

Prayers for us all....peace, satisfaction and never suffer.
Belinda

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