I am both an RN and a survivor. I use Living Beyond Breast Cancer both to support myself and my clients. They provide a wonderful resource. I only wish I had found their website when I was diagnosed in 2004, instead of a couple of years later. They produce both an exceptional website and handouts that are superb.
Review from CharityNavigator
I have stage iv breast cancer and really appreciate the information that LBBC provides. It is wide ranging, thoughtful and comes with a lot of heart.
LBBC is an amazing organization that I am proud to say I get to work with on a regular basis through the partnership my organization has with them through the Cis B. Golder Grant. From the depth of their educational programs offered to breast cancer patients, to their survivor hotline and various conferences that are tailored to breast cancer survivors of all types, to their amazing events, to their beautiful marketing materials: LBBC's name 'Living Beyond Breast Cancer' is allowing woman across the nation to truly do just that: LIVE.BEYOND their cancer experience - which is a magnificent gift that is touching thousands of breast cancer survivors nationwide. Through the Cis. B Golder Grant - not only is LBBC able to provide a wealth of education and support to breast cancer patients, but also direct financial assistance. God Bless You for the work you do, and I look forward to working together on the Cis B. Golder Grant in the future.
I have used the info from LLBC so many times! I download the teleconferences for education, enjoy the newsletter, and I actually got to go to the Conference for Young Survivors last year thanks to LLBC and a travel grant. I learned so much at that conference and was able to pass on treatment changing, and life saving info to the other girls when I got home. I am still talking about all I learned at that conference a year and a half later! I use the LLBC online community as well. The Advanced Breast Cancer Support Community also has given me so much information and support. I don't think I would have been able to manage my journey so well or with so much positive energy without the posts of those women. I think LLBC is THE most helpful organization there is for breast cancer survivors.
LBBC was a lifeline for me as I was drowning in the news that after 10 years I had had a recurrence of breast cancer. My original surgeon had retired and as I was wondering where to go next ( this was in 1994), an article appeared prominently in the Phila Inquirer about a young radiation oncologist starting an organization to help women cope with a breast cancer diagnosis. I immediately dialed the number printed in the newspaper and, of all things, Dr. Marisa Weiss herself answered the phone. I think she was in her kitchen at home - lots of background noise. She calmly listened to my story and helped me focus on moving forward toward treatment second time around, assuring me that the three surgeons I had selected all had good reputations in the area. We must have spent 1/2 hour on the phone. I will never forget how helpful, calming and reassuring she was to me - a perfect stranger! After treatment I immediately signed on for the first Survivor Helpline training class and worked the phones for many years before retiring. LBBC is one of the best run organizations I have encountered and I feel privileged to have been a part of it.
Excellent organization, the go-to place for information on breast cancer, plus guides to other forms of cancer too. Their teleconferences have been very helpful to me. None of my doctors took much time with me, or they didnt have many answers.
Being diagnosed with Breast and Bone Cancer is really scary. During the year of my metastic diagnosis, i knew noone else like me. Through the metastic conference calls that the LBBC provided, I found that I was not alone. Through these calls I learned of new coping strategies, treatments options and a whole lotta hope was provided.
I often refer other survivors to the LBBC volunteers. They seem to match up well and can always find someone close to another's situation.
The summary of the ASCO findings are put in 'laymans' terms. These new therapies are instrumental in the survivorship of many. LBBC does a great job at getting the word out from successful trials. I fully support this wonderful organization.
My main connection with Living Beyond Breast Cancer is through their helpful, up-to-date, thorough, yet understandable brochures and their website.
I found Living Beyond Breast Cancer online when I was diagnosed with breast cancer in 2003 and found the information invaluable when I was making treatment decisions.
Since 2005 I have been a volunteer for other cancer-related organizations and frequently refer clients to LBBC's website. I use their brochures and newsletter as references when counseling women with breast cancer and I share their brochures with others. The booklets are SO helpful, especially the one about metastatic disease, fear of recurrence, bone health and hormonal therapy.
In February of 1996, my husband at the time underwent triple by-pass surgery @ Jefferson Hospital. While he was recuperating, I went for my baseline and was informed that same evening that there may be a problem. On March 27, 1996, I underwent a mastectomy & the beginning stages of reconstruction also at Jefferson Hospital. Our daughter, Alison, was 5 at the time.
At some point during my recovery, someone told me about LBBC and I started going to their "Young Survivors" meetings, which at that time were hel at the Narberth Fire Station. The crowd was small and the surroundings were a little bleak. In the meantime, I started to volunteer for LBBC in their office in Narberth. My first event was at the King of Prussia Mall, which was an art exhibit having to do with women affected by breast cancer. That led me to help with many more functions. One of my favorites was calling area florists & asking them if they would donate a centerpiece for our upcoming annual gala which was held at the Crystal Tea Room that year. What a pleasant surprise when each & every one I called said absolutely yes they would and beautiful the room looked with an array of gorgeous flowers that were donated to such a great cause.
Aside from volunteering for LBBC and after discussing how we could make the Young Survivor's meetings more attractive, I asked what they thought of the my hosting the meeting at my house, which at the time was in Lafayette Hill. We decided to make it a Pot Luck supper with a guest speaker for each meeting, which was held every 6 weeks or so. I can tell you that my home was filled with women from their early twenties to I think the cut-off age at that time for a "Young" survivor was maybe 40ish. It gave me such joy to open up my home to these women who were all going through the same ordeal. Many friendships were formed, tears cried, information gained and just a forum where they could experience the joy & pain of others.
As you may know, at the annual Gala each year, four women are chosen to be honorees and I did get a phone call I think in 2001 with the news that I was chosen for the upcoming gala to be one of those women. What an honor and a privilege. During this time, my marriage was ending and it was a difficult time, but just like breast cancer, I got through it. The Gala night came and my family & friends were all there along with my daughter, who was 10 at the time. I didn't have thank you speech prepared, but Alison told me, "Mom, just wing it" and that's what I did. What an honor!
So, 15 years later, I am cancer free and my life has changed in some ways, but will never forget my time spent with the wonderful people at LBBC and the wonderful experiences I enjoyed being a part of such an exceptional organizaiton.
I am 54 and a 3 year survivor. I connected with LBBC when I was first diagnosed and I still find them to be a great support and a fountain of valuable information. The website provides the latest in breast cancer news, current medical research reported from the annual meetings of the American Society of Clinical Oncology, as well as forums for women to connect with others who are in a similar situation - i.e. newly diagnosed, living with metastatic disease, women of color, etc. My favorite LBBC feature is the monthly teleconferences when a doctor or doctors discuss a particular topic (the topic for this month is hormonal therapy). The doctors provide up-to-date information in easy-to-understand language for the lay person. The listening audience then has the opportunity to ask the doctor questions - no other forum provides this unique service! If you miss the teleconference, replays and downloads are available on the website. LBBC is one of the best organizations for reliable information and support for breast cancer patients and survivors.