JULY 2015
METS MATTERS
INFORMATION FOR WOMEN LIVING WITH METASTATIC BREAST CANCER
IN THIS ISSUE...
CALL SHARE
Breast Cancer Helpline
Call to Speak with a Metastatic Peer

844-ASK-SHARE
HABLA CON UNA SOBREVIVIENTE
Llame a la Línea de Auxiliode Cáncer de Seno de SHARE al

(866) 891-2392. Usted podrá hablar con una sobreviviente que tiene cáncer de seno metastático.

Additional Resources

SHARE'S HelpLine has a 400 Page national resource guide. 

 

Call The Breast Cancer Helpline For Additional Resources

1-844-ASK-SHARE

Need Trials?
NBCC's Clinical Trial Partnerships for women living with metastatic disease can be seen HERE

 

American Cancer Society Clinical Trials Matching Service

1-800-970-7848 

 

MBC TRIALS NOW RECRUITING:

 

For all clinical trials currently recruiting MBC patients, go to breastcancertrials.org.  When searching trials for metastatic disease, check off your subtype and trials that you may be eligible for will be filtered.  

 

Please note there are also trials related to support and education, relationships, pain management as well as vaccines and immunotherapy.  

UPDATE FROM ASCO 2015 FOCUSING ON METASTATIC BREAST CANCER
Dr. Don Dizon presented a webinar with news specific to MBC from ASCO.  To hear the webinar,
DONATE TO SHARE
BECOME A HELPLINE VOLUNTEER
Being diagnosed with metastatic breast cancer is frightening, isolating and overwhelming. By becoming a Helpline Volunteer, you will be able to help others living with metastatic breast cancer feel less scared and alone. 
If you are interested in volunteering, 
please contact Christine:

cbenjamin@
sharecancersupport.org
COMPLIMENTARY RACE FOR THE CURE REGISTRATION
Susan G. Komen is offering complimentary registration to women living with metastatic breast cancer.  Click HERE to register and use the code SHARE.
NEW IN-PERSON MBC GROUP
A new in-person support group will begin in OCT at SHARE's Main Office in NYC.  The group will meet on Wednesdays at 12:30 - 1:30 PM.    CLICK HERE FOR MORE INFORMATION


Today's Standards Of Care Started Out In Clinical Trials

By Joan, SHARE Support Group Facilitator and HL Volunteer

 

The words, clinical trial, are often not what cancer survivors want to hear from their oncologist. They conjure up fears of being a guinea pig or at the end of a rope, receiving inferior medical care, or getting only a placebo rather than the real McCoy. But those are old wives' tales. In fact, clinical trials offer survivors another treatment option.

 

As a metastatic breast cancer survivor, helpline volunteer and facilitator of a nationwide telephone support group at SHARE, I often hear survivors expressing their reluctance to consider a clinical trial. I relate to the hesitation and concerns because those fears were once my own, until I learned more about trials and how they work. 

  

Read more  HERE.

More About Clinical Trials 

 

According to data presented by Margaret Mooney, Chief, Clinical Investigations Branch, Cancer Therapy Evaluation Program within NCI, and Musa Mayer, breast cancer advocate of AdvancedBC.org, approximately 3 percent of adult cancer patients participate in clinical trials.  

In addition, the article "Transforming Clinical Research in the United States: Challenges and Opportunities: Workshop Summary" reports 500 NCI Cancer Therapy Evaluation Program (CTEP) trials by Steven Cheng revealed that 40 percent of trials failed to achieve minimum patient enrollment, and more than three of five phase III trials failed to do so.  

There are many reasons why patients are reluctant to participate in clinical trials.
The same article noted above states that "In an analysis of 23 oncology studies and 6,000 patients, some of the barriers to participating in clinical trials cited most frequently by patients were (1) fear of a reduced quality of life, (2) concern about receiving a placebo, (3) potential side effects, and (4) concern that the experimental drug might not be the best option (Mills et al., 2006). In addition, patients also cited barriers such as inconvenience of participation, dislike of randomization, wanting one's own doctor to make decisions, feeling coerced, and loss of control over treatment decisions. The single most influential factor in enrolling patients in clinical trials is physician influence."

There can be many benefits to participating in clinical trials.  Patients report potential benefits as being able to receive an effective treatment that is not yet available to the general population, helping advance science and treatment in order to help others, paying it forward or a sense of giving back.  

To further explore these issues, concerns and benefits, SHARE is hosting a webinar in November.  Patients who have participated in or are currently enrolled in clinical trials will form a panel to discuss lessons learned and personal experiences.  You will be able to hear their stories, including the story of an exceptional responder who remained on the trial drug for over 6 years.

To read the article above in it's entirety, please click HERE.  
Genetic Testing
Hereditary Breast and/or Ovarian Cancer Syndrome Testing Criteria
The National Comprehensive Cancer Network recently published guidelines for testing for the Hereditary Breast and/or Ovarian Cancer Syndrome.  Below is an excerpt of a summary of the guidelines:

Meeting one or more of these criteria warrants further personalized risk assessment, genetic counseling, and often genetic testing and management.

  1. If someone in your family has a known deleterious BRCA1/BRCA2 mutation.
  2.  If you have a personal history of breast cancer and were either:
  • Diagnosed at or under 45
  • Diagnosed at or under 50 with
  • Had an additional breast cancer primary
  • Have a close blood relative with breast cancer at any  age
  • Close relative with pancreatic cancer
  • Relative with prostate cancer
  • Unknown or limited family history

Read More HERE

UPCOMING PROGRAMS

WEBINAR

MAXIMIZING TREATMENT OPTIONS: What To Know When Considering Clinical Trials

Current and former clinical trial participants will discuss decision-making from a patient perspective.  Topics will include potential benefits, misconceptions and considerations when exploring clinical trials.  Panelists will include women living with metastatic breast cancer and ovarian cancer. 
 
Wednesday NOV 18 12:30 - 1:30 PM  EST



SUPPORT FOR WOMEN LIVING WITH METASTATIC BREAST CANCER AND THEIR FRIENDS AND FAMILY
Funded by Celegane, Genentech, JALBCA, Avon and Pfizer
LIVING WITH UNCERTAINTY
Evening Telephone Support Group
This group is offered every Thursday evening.  Two sessions are facilitated by a trained volunteer who is living with metastatic breast cancer.  Two sessions are facilitated by a professional therapist and a trained volunteer living with mbc.
Thursdays - 7:00 - 8:00 PM EST
Every Thursday
CALL IN NUMBERS:  1-866-210-1669   PARTICIPATION CODE: 935-3618
TELEPHONE SUPPORT GROUP
Daytime Telephone Support Group
This weekly group is facilitated by an LCSW who has had early stage breast cancer.  Join other women living with metastatic breast cancer to discuss living with this disease.  
Mondays - 4:00 - 5:00 PM EST
Every Monday
CALL IN NUMBERS:  1-866-210-1669   PARTICIPATION CODE: 935-3618
RSVP:  Cbenjamin@sharecancersupport.org
TELEPHONE SUPPORT GROUP
For Young Women
This monthly group is facilitated by a young woman living with mbc who is a trained SHARE volunteer. Join other young women living with metastatic breast cancer to discuss the challenges, fears and concerns specific to your age group.
WEDNESDAYS - 8:00 - 9:00 PM EST
FIRST WEDNESDAY OF EACH MONTH
CALL IN NUMBERS:  1-866-210-1669   PARTICIPATION CODE: 935-3618
METASTATIC BREAST CANCER HELPLINE
This toll free Helpline can match you with a trained volunteer who is living with metastatic breast cancer.
CALL 866-891-2392 AND ASK TO SPEAK WITH SOMEONE LIVING WITH METASTATIC BREAST CANCER.
CAREGIVER SUPPORT GROUP
This in-person support group is for those whose loved ones have been diagnosed with any stage of breast or ovarian cancer.
Tuesdays  6:00-7:30 PM EST
SHARE MAIN OFFICE, NEW YORK, NY
MAR 10 APR 14
CALL 855-498-5523 TO REGISTER
CAREGIVER HELPLINE
Caregivers can call this toll free number and speak with a trained caregiver volunteer.  Talk to someone who's been there.
CALL 855-498-5523 AND ASK TO SPEAK WITH A CAREGIVER

ABOUT SHARE 

SHARE's mission is to create and sustain a supportive network and community of women affected by breast or ovarian cancer. We bring these women and their families and friends together with survivors to provide participants with the opportunity to receive and exchange information, support, strength and hope.   

 

SHARE provides telephone support, support groups, educational programs and advocacy opportunities.  All services and programs are free.   


Sincerely,

Christine Benjamin LMSW
Breast Cancer Program Director

Cbenjamin@sharecancersupport.org

212-937-5586