Program History

Organizational Meeting – June 29, 2010

The Triangle Bladder Cancer Support Group was an outgrowth as the result of the Bladder Cancer Advocacy Network’s Regional Forum held in Chapel Hill, NC on May 15, 2010.  Liz Sherwood, Dr Matt Nielsen, Dr Deborah Bradley, Michael Barr, Rosie Smith and David Langham met and with Liz’s guidance, created a Mission Statement (“To provide support, education and outreach for those touched by Bladder Cancer, survivors, caregivers, friends and all that are affected”) and a Vision statement (“Living with and beyond Bladder Cancer”).  The group was to find its direction as time progressed.  In addition, it was requested that the group consider having a list of survivors and caregivers who would be available to talk with others who were facing Bladder Cancer. Since our beginnings, members of the Triangle Bladder Cancer Support Group have shared their experience with many people locally, throughout North Carolina and the Southeast.  We agreed that we would meet on the second Tuesday of every month from 7-8:30 starting in September at UNC’s Comprehensive Cancer Care facilities at Carolina Pointe.  

 
2017

January 10:  Frank Sloan - Health Care Economics. Frank Sloan is the J. Alexander McMahon Professor of Health Policy and Management and Professor of Economics at Duke University since 1993. He has been a member of the National Academy of Medicine since 1982. He is a past President of the American Society of Health Economists and was recently given the V.R. Fuchs Award for Lifetime Contributions to Health Economics. 

2016

January 12: Brant Inman, MD   Dr. Inman will speak to us about urinary diversions.  Brant Inman, Surgical Oncologist, Urologic Oncologist, Urology Surgeon, Duke Medical Center.

February 9: Jane Fellows, RN   How To Care For Yourself After Bladder Removal Surgery - Jane Fellows, RN, MSN, CWOCN Duke University Medical Center.

March 8: Members Panel   Group members Frank, Ritchie and Mike will share their bladder cancer experience with non-muscle invasive, muscle invasive and caregiving.

April 12: Deanna Griffie, BSN, RN, OCN   Deanna Griffie, Oncology Nurse Navigator with the Genitourinary Oncology Program at UNC will be speaking to us about "Navigating the Cancer Trajectory from Diagnosis into Survivorship".  She will discuss the role of nurse navigators and detail how you and your family can best utilize the expertise of the Oncology Nurse Navigator. She will offer suggestions for those without a nurse navigator. She will provide information to help all patients advocate for themselves and their families in our complex healthcare system.  Bring your questions and concerns to this interactive meeting. 

April 30 - AMP UP! Walk for Bladder CancerClick Here to Register and Donate: http://support.bcan.org/ampuptriangle

May 10: Continue our wonderful discussions with Don Rosenstein, MD Director of the Comprehensive Cancer Support Program at UNC.  We will have cake to celebrate 5 great years at Carolina Pointe.   

June 14: No Meeting  

July 12: No Meeting   

September 13 (6th Anniversary)Tracy Rose, MD MPH - Newly approved immune therapy drug Tecentriq.  Tracy Rose, MD MPH is a medical oncologist specializing in genitourinary cancers at the University of North Carolina at Chapel Hill. She has a research interest in clinical trial development in kidney and bladder cancer. She completed her fellowship at UNC, residency at Beth Israel Deaconess Medical School, and medical school at Duke University. She will be discussing the use of the newly approved immune therapy drug atezolizumab (Tecentriq) in advanced bladder cancer.  

October 11: Fran Bryant RN, BSN, CN4 Nurse Manager, - How to get the most out of your provider visit!  Fran Bryant is an RN, BSN, CN4 and Nurse Manager at the Genitourinary Oncology Program at the Duke Cancer Institute.

November 8:  No meeting due to elections.

December 13: Holiday Potluck - Lara Leininger Ostomy Nurse  Lara Leininger, Wound, Ostomy, Continence Nurse, UNC HealthCare. Lara will speak to us about two projects starting at UNC in 2017:  a pre-op ostomy weekly class and a cystectomy research project involving an educational video.


2015

Jan 13: Cancelled due to weather.  

Feb 10: Dr. Raj Pruthi, Healthcare Economics  Dr. Pruthi will discuss the economics of bladder cancer care and the evolving healthcare landscape in the Triangle and beyond.

Joanna Burgess: Inspirations!  A person, a poem, a gift...each of us, as survivors or caregivers, have found inspiration and hope as we faced bladder cancer.  Please bring your inspiration (picture of person(s), poem, song, object, etc.) to share with others! Joanna Burgess will start us off with her inspiration and then lead us as we share our inspirations.  Your inspiration might just be the spark that the new person in the room needed to hear!    Host: Sam

March 10: Jennifer Spring Oncology Dietitian: Live Cooking Demo!  Host: Marge and Lou Jennifer will give us a live cooking and food preparation demo!

March 30: Cheers for Charity - A portion of the proceeds will benefit the NC Triangle BCAN Chapter 5-7pm at the Hot Tin Roof 115 W. Margaret Ln, Hillsborough NC 27278  Featuring live music from the Maddog Blues Band!

Apr 14: Mary Dunn Nurse Practitioner UNC Cancer Hospital,  Bladder Cancer: A Focus on Sexuality and Intimacy Host: TBA  Mary will share with us about her recently published article on sexuality and intimacy for those with bladder cancer.


May 2: Walk for Bladder Cancer  Click here for details: http://support.bcan.org/site/TR/Walk/General?fr_id=1163&pg=entry 

May 12:  Survivors and Caregivers Split for Circle Sharing Host: Tba

June 9: Dr. Angie Smith - The BCAN Patient Survey Network  Host: TBA  Dr. Smith will talk to us about a way to actively engage bladder cancer patients and caregivers in the research prioritization process by asking them research questions that matter most to them, and then passing this information onto funding agencies.

July 14: Dr. Mike Harrison, Duke Medical Center  - The Role of Physical Activity  Dr. Mike Harrison will discuss the role of physical activity and exercise in both preventing/delaying cancer progression and mitigating side effects of cancer therapy.

August 11: Survivors and Caregivers Split for Sharing Circles David will share the presentation he made to the BCAN Think Tank.

September 8: Support Group's 5th Birthday Party with Dr. Raj Pruthi   Host: TBA Dr. Pruthi will discuss the economics of bladder cancer care and the evolving healthcare landscape in the Triangle and beyond.

September 8: Support Group's 5th Birthday Party with Dr. Matt Nielsen  Dr. Nielsen will talk about what excites him about the future of bladder cancer treatment!

September 14 : Special NC BCAN Event: "Golfing Fore A CauseSept 14, 9 am - Hillandale Golf Course Contact Stephen Dunn - 919.475.8472

October 13 - Monica Smith, Executive Director BCAN - How to find bladder cancer materials on the internet!  Trying to find bladder cancer materials on the internet can be confusing and sometimes incorrect.  Monica will help us learn how to explore and appropriately use the online materials, videos and webinars that have been developed just for us, the bladder cancer survivor!

November 10 -Survivors and Caregivers Split for Circle Sharing

December 8: Holiday Potluck with Family and Friends   Bring a potluck dish and your family and friends! 




2014:

Jan 14: Ron Chen, MD MPH Assistant Professor, Radiation Oncology University of North Carolina at Chapel Hill (Host:Brittney)  Ron will speak to us about bladder preserving treatment and quality of life issues.

Feb 11: CANCELLED DUE TO WEATHER.

March 11: Matt Nielsen, MD  (Host: Marge and Lou) Matt Nielsen will talk with us about understanding decision-making and information needs in survivorship. 

April 8: Nancy Parrish (Host: George and Garnet)  Nancy is a bladder cancer survivor and is very active in recovery and support.  She is coming down from Waynesville NC to share with us her experiences  with the BCAN ThinkTank, the Bladder Cancer Picnic and volunteering to speaking with people who are newly diagnosed or facing radical cyctectomy especially those in the process of making a decision about their diversion.  

May 3: 2014 Triangle Walk for Bladder Cancer, Hillsborough, NC.  12:00 noon  beginning at the Police Station - 127 North Churton St. Hillsborough NC  Here is the link to join in the fun:http://TriangleWalk.kintera.org/bcan.

May 13: Jane Fellows, RN  Host: Cam and Buddy How To Care For Yourself After Bladder Removal Surgery - Jane Fellows, RN, MSN, CWOCN Duke University Medical Center.

June 10: Survivors and Caregivers Split for Circle Sharing  Host: Ginny and Ernie Ruckert

July 8: LuAnn Smith, RN, BSN and Joan Kurczak, RN  Host: Steve Snyderman LuAnn and Joan will share their lives as Bladder Cancer Nurse Navigators at UNC.


August 12: Heidi Gessner, MDiv, BCC  Host: Tony Chen Heidi will talk about the bereavement process - Heidi G. Gessner, MDiv, BCC Palliative Care Chaplain/Bereavement Coordinator UNC Hospitals

September 9: Brant Inman, MD  Host: Garnet and George  Dr. Inman will speak to us about urinary diversions.  Brant Inman, Surgical Oncologist, Urologic Oncologist, Urology Surgeon, Duke Medical Center

October 14: Matt Nielsen, MD, Ginny McLaurin, BCAN Chapter President and Cam Morrison, BCAN Chapter Treasurer   Host: David and Lauri Matt, Ginny and Cam will update us on the exciting BCAN (Bladder Cancer Advocacy Network) activities including the recent Medical Think Tank and what the local BCAN Chapter is doing for our area of North Carolina.

November 11: Jennifer Spring, RD CSO, LDN Oncology Dietitian, UNC Cancer Hospital Host: Louis  Jennifer will discuss the most recent nutrition and lifestyle related research and bladder cancer survival.

December 9: Dr. Billy Kim and our Holiday Potluck with Family and Friends   Host: Sparkey Bring a potluck dish and your family and friends! Dr Kim will be discussing "Basal-like bladder cancer: biology and clinical implications".

 
2013: 

Jan 8: Dr. Billy Kim - Bladder Cancer Genetics and Its Implications (Host: Garnet and George) Dr Kim will speak to us on the exciting work that is happening with genome sequencing and bladder cancer.(Host: tba)

February 12: Joanna Burgess, RN, CWOCN is a bladder cancer survivor and the 2012 Great Comebacks National Award Recipient.  She will share her wonderful journey with us. (Host: tba)

March 12: Mary Dunn, NP-C, OCN and David Langham - Mary and David will preview their presentation they are giving in April as part of the TeleHealth Nursing and Allied Health Lecture Series 2013.  Mary is an Adult Nurse Practitioner at UNC Chapel Hill specializing in Urologic Oncology with a particular interest in survivorship issues.  David is the coordinator for the Triangle Bladder Cancer Support Group.tba (Host: Lauri)

April 9:  Liz Sherwood, Coping with Diagnosis, Uncertainty and Recurrence (Host: Joe and Ginny) - Liz will lead us in a conversation about how we deal with diagnosis, uncertainty and recurrence.

May 4:  Triangle Area Walks for Bladder Cancer  Triangle Area Walk -12:00 noon  beginning at the Police Station - 127 North Churton St. Hillsborough NC Apex Walk For Joy - 4:00 PM  The walk takes place at Salem Middle School track, 6150 Old Jenks Road, Apex.

May 14: Dr Brant Inman (Duke Cancer Center), Non-Muscle Invasive Bladder Cancer. Dr. Inman will speak to us about non-muscle invasive Bladder Cancer. (Host: Cam and Buddy)

June 11: Russell Moore, Pharm.D.  Russell Moore is a Clinical Pharmacist practicing with the outpatient genitourinary medical oncology group at Duke University Medical Center in Durham, NC. His research and practice interests focus on the treatment of patients with prostate, kidney, bladder, and testicular cancers.  He is a Board Certified Oncology Pharmacisttba (Host: Tony)

July 9: Rosie Smith, Cornucopia Cancer Support Rosie Smith will share with us the about Cornucopia Cancer Support Center.  Since 1995, Cornucopia has been a place where anyone touched by cancer can find the support and resources to live life to the fullest.(Host: Eva)

August 13: AskIt Basket (Splitting into Survivors and CareGivers) (Host: Barbara)

September 10: 3rd Year Birthday Party for TriangleBCS with Joe and Terry Graedon, "Making Sense of Confusing Headlines and Grandma's Wisdom" In 1976, when The People's Pharmacy® was originally published, it was one of the first books providing drug and health information to consumers. It went on to become a number one bestseller. Since then, Joe and Terry Graedon have gone on to write 18 additional books, one of which was a medical thriller co-authored with Tom Ferguson, MD (No Deadly Drug, Pocket Books, 1992). In addition, they write The People's Pharmacy® syndicated newspaper column, distributed by King Features®, co-host an award-winning health talk show on public radio, and speak frequently on health issues.  (Host: tba)

October 8: Don Rosenstein, MD Director of the Comprehensive Cancer Support Program at UNC Improving conversations with Your Physician  (Host: tba)

November 12: Heather Schultz, NP, UNC Urologic Services.  Heather will speak to us about the role of Nurse Practitioners and Physicians Assistants in Urology  (Host: tba)

December 10: Holiday Potluck with family and friends! (Host: tba)  Please join in a Show and Tell sharing for our Triangle Bladder cancer support group annual holiday potluck meeting.  Bring a photo, song, poem, piece of handiwork or craft,  or wherever your imagination leads you, and share as we enjoy our meal. This is very informal and in the spirit of fun and fellowship. Your contribution to the festivities need only last a minute or two. Please let Lauri Langham know in advance for planning purposes, (laurilangham@gmail.com) however last minute contributions will be accepted, time permitting.  Come and share something unique about you!

Our discussions will focus on both the recent passing of our members and our shared experience that brings hope to those that are recently diagnosed or suffering from Bladder Cancer.  Mary Dunn, our local BCAN Chapter Secretary will also join us to talk about the chapter and offer an opportunity to make individual contributions to BCAN if you choose to. 

2012: 

January 10:  Sharing Time.

February 14:  AskIt Basket (Splitting into Survivors and CareGivers).

March 13:  Dr. Matt Milowsky - Fireside Chat.

April 10:  What is the  NC Cancer Hospital Patient & Family Advisory Board? - Loretta Muss, Coordinator and Board Member Catherine Huffman will speak about the growth of the board, it’s involvement in the community and the impact on the workings of the hospital. 

May 5:  Triangle Area Walk for Bladder Cancer  Walk-12:00  beginning at the Police Station - 127 North Churton St. Hillsborough NC; Concert - 1:30 - 3:00 The Road Home Band at The Depot At Hillsborough Station 246 South Nash St. Hillsborough NC On May 5, 2012, people across the country will walk to bring attention to the incidence of bladder cancer and to raise money for bladder cancer research and education. 


May 8: How To Care For Yourself After Bladder Removal Surgery - Jane Fellows, RN, MSN, CWOCN Duke University Medical Center

June 9: TriangleBCS goes 'On The Road' to Oxford, NC!  Please join us at our regular meeting place (see below) on Saturday June 9 at 1:15 and we will car pool to Oxford, NC to share our stories at an information meeting at the Richard H Thornton Library starting at 2:00 PM 210 Main Street in Oxford.  We will be back between 4 and 5.

June 12: Jennifer Sorosiak, Writer/Researcher, shares the independent personal research she has done in response to the loss of her brother to Bladder Cancer.  

July 10: Mind, Body, Spirit: Approaches to Stress Management - Jon Seskevich RN, BSN, BA, CHTP.  

July 10: Started listing Personal Contacts on the web site and began 'Hosting' at the meetings.

August 9-11:  Two members attended the 2012 Bladder Cancer Think Tank in Stowe VT.

August 14:  2012 Bladder Cancer Think Tank  (Host: Ernie and Ginnie) - Joe McLaurin and David Langham will talk about their experiences at the Bladder Cancer Advocacy Network Medical Think Tank.

Sept 8:  Manned a booth at the Annual Fall Triangle SUNA Conference in Wilmington NC.

Sept 11: 2nd Year Birthday Party for TriangleBCS! (Host and special treat: Samantha and Kent)

Oct 9: Bladder Cancer and Women (Host: Cam and Buddy) - Dr. Angie Smith is an Assistant Professor at UNC who specializes in robotics and urologic oncology.  Her research interests include the improvement of post-operative complications, especially in bladder cancer.  She is originally from Pittsburgh, but has been in Chapel Hill since 1999, having done undergraduate, medical school and residency at UNC.

Oct 7: Distributed BCAN and group literature at the Charlie Lustman concert. 

November 13: (Host: Tony)  Larry Rzepka, Executive Director of the Bladder Cancer Advocacy Network is coming to talk about BCAN and BCAN Chapters.  (Host: Tony)  (postponed to a future date: The Roles of Nurse Practitioners in Bladder Cancer Care and Survivorship - Mary Dunn, NP-C, OCN is an Adult Nurse Practitioner at UNC Chapel Hill specializing in Urologic Oncology with a particular interest in survivorship issues.)

Dec 11: Holiday Potluck with family and friends!  (Host: Sparkey)


2011: 

January:  Cancelled due to snow.

 February 8: "Coping with Bladder Cancer" Don Rosenstein, MD Director of the Comprehensive Cancer Support Program at UNC

March 23: Manned a booth for TriangleBCS at the Senior Resource Connections Fair in Chapel Hill, NC.

March: Each person talked about their journey and we had a business meeting.

April 12: AskIt Baskets Bring one or two questions that are important to your Bladder Cancer Journey as a survivor or as a care giver.

May: Participated in the BCAN Bladder Cancer Awareness Walk in Hillsborough, NC.

May 10:  Continue our wonderful discussions with Don Rosenstein, MD Director of the Comprehensive Cancer Support Program at UNC

June: Attended the Bladder Cancer Picnic in Maggie Valley, NC.

June 14:  Susan Head,PhD  will introduce us to Mindfulness-based Stress and Pain Management

July 12: Open Discussion/Sharing

Aug 9:  Dr. Matt Nielsen - Update on the Bladder Cancer Advocacy Network (BCAN) Think Tank

Sept 9: Manned a booth for BCAN and TriangleBCS at the North Carolina Cancer Survivorship Summit in Greensboro NC.

Sept 13:  One Year Birthday Party of TriangleBCS!

October 5:  Manned a booth at the Carolina Meadows Wellness Fair.

October 11:  Askit Baskets and Split into two groups Survivors and CareGivers.

November 8:  "Put Good Food on Your Plate!  Guidelines for Healthy Eating for Cancer Survivors and Thrivers"  Kay Schlegel Pratt, MS, RD, LDN Essential Nutrition & Wellness, LLC.

December 13:  Holiday Potluck with Family and Friends.


2010:

September: Introductions, Story Sharing and Questions

October: "Taking Care of Yourself After Cystectomy" Speaker from UNC Hospitals

November:  AskIt Baskets – Please write down one or two questions that are important to your Bladder Cancer Journey either as a survivor or as a care giver.   We will put the questions in two baskets and split into Survivors and Care Givers for group discussions.

December 14: Holiday party.  Bring your favorite snack food to share! Agenda: 1.Eating and Visiting, 2. Putting to put together a Triangle Bladder Cancer Support Information Board to use at health fairs etc., 3. Creating a small committee to help plan meeting topics?, 4. Are we interested in putting on a Triangle Bladder Cancer Walk in May (something BCAN is discussing)?, 5. More Eating and Visiting...

 

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