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Rona Greenberg and Jessie and Dave Bushman make up the support team for the Northern Jersey FORCE group. They are all graduates of the VolunteerFORCE Academy and are certified as Peer Support Group Leaders. Dave is also a graduate of the FORCE’s FRAT Advocacy Program. Each of their backgrounds brings them to FORCE for different reasons, but their passion for volunteering and supporting others is the common thread that binds them together. Rona, Jessie and Dave not only provide resources and emotional support individuals need as they are navigating their hereditary breast, ovarian and related cancer path, but also offer community awareness of hereditary cancers, family risk and FORCE. We thank them for their tireless work in New Jersey. Fill out our VolunteerFORCE application to help make a difference, too!
After receiving positive results of my BRCA 2 mutation, I began searching for information regarding hereditary breast/ovarian cancer and thankfully found FORCE on the internet. It was an immediate feeling of relief and gratitude when I realized there were others who were experiencing a similar journey.
It was May 1961, a month before my Bat Mitzvah, when my mother told me and my three younger sisters, that she had breast cancer and was going to the hospital for surgery. The Bat Mitzvah was cancelled. That was my cancer initiation. My mother had a radical mastectomy with removal of the lymph nodes and was also diagnosed with ovarian cancer. She survived for six years and died at age 43, in 1967. We later discovered that our grandmother Rebecca, for whom I am named and who had died when our mother was only 10 years old, had also died from breast cancer in 1934.
My three sisters and I participated in a clinical trial in 1997 designed to identify carriers of the mutated BRCA gene in the high risk Ashkenazi Jewish women population. My sisters were all negative and I was tested positive for the BRCA2 gene mutation. After a total hysterectomy in 1998, I enrolled in a high risk surveillance program and participated in the STAR trial - the Study of Tamoxifen and Raloxifene. Twelve years later, I was diagnosed with DCIS and subsequently had a bilateral mastectomy.
Although children of a BRCA+ parent have a 50% risk of carrying the mutated gene, my two daughters did not beat the odds. They both tested positive for the BRCA2 mutated gene, enrolled in a high risk surveillance program and will do prophylactic surgeries in the future.
I consider myself very lucky to have found FORCE in 2002. I met a group of the most remarkable and smart women, who embraced me with love and support, shared critical and cutting edge information, and enabled me to make informed medical decisions. And then it became my turn. As Northern Jersey Peer Group Support Co-leader, I am able to pay it forward by having the incredible opportunity to offer support and education to other individuals with hereditary cancer as they embark on their own life- affirming journey. Because FORCE believes that no one should have to face hereditary cancer alone!
When I recently received the terrible diagnosis of pancreatic cancer, Stage 4, BRCA associated, my FORCE friends have been right by my side with their love and support and research. I have learned invaluable information which will hopefully extend my life. Yes, knowledge is power and hope. By empowering others with this critical information, we can save lives.
I am not BRCA positive. My husband Dave tested positive for the BRCA 1 gene mutation in the fall of 2010. He immediately got in touch with as many members of his family as he could find to advise them of the family situation. Both of our children were tested and our daughter Dana (then 34) tested positive for BRCA1. Our son tested negative. Dana spent the next few months visiting with breast and plastic surgeons, first on the west coast where she lives and then traveled to the east coast to do more research. I accompanied her on visits to doctors in the NYC area and then we made a trip together to New Orleans to meet with the doctors there. She had her prophylactic bilateral mastectomy in May of 2011 following by a hysterectomy shortly after. She found FORCE and felt it was a wonderful resource for many of her questions and concerns.
It was Dana who strongly suggested I get involved working with people who needed support in their journeys. She told me that I was so warm and caring with people and that I should get involved with the organization. What a wonderful compliment from my daughter. As usual, I followed her advice and completed training for a Peer Support Group Leader for the Northern Jersey FORCE group. My daughter, husband and I have attended the last three Joining FORCEs Conferences, and working with FORCE has become a family activity. Three years after I began volunteering for FORCE, I was diagnosed with breast cancer. All the support I had given to others was returned to me 10 fold.
As the son of a mother who died at age 42 of breast and ovarian cancer, I was always aware of the terrible toll that cancer had taken in her family. In addition to my mother’s diagnosis, two of her sisters died of cancer, one at 34 of breast cancer and another at 35 of ovarian cancer. One of her brothers passed the mutation to his daughter, who died at 44 of breast cancer and passed the mutation along to her son and two daughters. Both of her daughters had breast cancer. I also have five cousins, a niece and a nephew who are BRCA1+. Five have had breast cancer and one had ovarian cancer. My sister, daughter and I have also tested positive for the BRCA1 gene mutation 187delAG.
Ever since I found out I was BRCA1+, FORCE has been an important part of my life. At my daughter’s request, my wife and I became actively involved in FORCE and we are both currently FORCE Peer Support Group Leaders for Northern New Jersey. Aside from our quarterly support group meetings, we speak at various meetings, symposiums and panels about FORCE and hereditary breast and ovarian cancer.
While the focus of FORCE and discussions about the BRCA gene mutation have naturally focused on women, since they are the ones who face the greatest risk, for me it is also important that men be part of the discussion. Men are equally likely to pass along a BRCA genetic mutation but it is much more than that. The discussion that men need to have revolves around many different issues. Men in each of these following categories have their own specific concerns, needs and interests.
With these things in mind, I set up The BRCA Brotherhood Facebook group, a closed group open to men only. It is the companion group to the BRCA Sisterhood Facebook group, which is for women only.
The purpose of The BRCA Brotherhood is to allow men who have the BRCA gene mutation or who have a family member with the gene mutation to discuss the various issues, problems and concerns that we face. It affects not just them but their spouses, significant others, siblings and children. Hereditary cancer affects the entire family.