Archive for the ‘breast cancer’ Category

Blog Back: Healing and Embracing Change After Breast Cancer

March 31, 2014

LynnFolkmanLynn Folkman, manager of our volunteer programs, wrote her Blog Back post  about her personal growth after reaching her 5-year “cancerversary.”  Read her story and check out our past Blog Back columns.

“Feels like some kind of wild ride but it’s turning out just to be life going absolutely perfectly.”

Every morning, while having my espresso, I view a piece of artwork with the above statement and allow it to resonate in me.

In March 2009, I was diagnosed with stage I ER, PR and HER2-positive breast cancer. I have always been a believer that things happen for a reason. Although certainly at the time, I could think of no good reason why breast cancer and chemotherapy would be on that list. As 2014 began, I was rapidly approaching my 5-year mark and found myself filled with a variety of emotions: joy, sadness, anxiety and fear. (more…)

This Week at LBBC: March 25 – April 1, 2014

March 25, 2014

This Week At LBBC Banner (2)
Welcome to our new blog column, “This Week in LBBC,” a weekly update of local and national events, programs and other initiatives by Living Beyond Breast Cancer.

National Programs and Initiatives

ANNUAL CONFERENCE FOR METASTATIC BREAST CANCER : We’re excited that registration opened for our eighth Annual Conference for Women Living with Metastatic Breast Cancer! Come join us Saturday, April 26 – Sunday, April 27, at the Philadelphia Marriot West in West Conshohocken, Pa. Register for the conference or apply for a travel grant and fee waiver. Visit to download a conference brochure.

TRIPLE-NEGATIVE BREAST CANCER WEBINAR SERIES: Learn more about triple-negative breast cancer during our free, two-part webinar series:

  •          Part One: Medical Update: On Thursday, April 17, from noon – 1 p.m. ET, featuring Rita Nanda, MD, who will help you understand today’s standard of care treatments for triple-negative disease.
  •          Part Two: Managing Fears of Recurrence: On Thursday, April 24, from noon – 1 p.m. ET, Julie Larson, LCSW, will discuss triggers of fears of recurrence and teach you strategies that will help you.



March 21, 2014

Annual-Conference-for-Women-BannerHaverford, PA., Friday, March 14, 2014– Philadelphia-based nonprofit organization Living Beyond Breast Cancer (LBBC) has opened registration for its 8th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 26 – Sunday April 27, 2014 at the Philadelphia Marriott West in West Conshohocken, Penn.

Breast cancer is considered metastatic (stage IV) when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.(1)  (more…)

Let’s Be Frank…

March 13, 2014

RondaWalker-27Regular LBBC blogger Ronda Walker Weaver is back, and with a topic not many are willing to discuss so frankly…sex. Read what she has to say about this three letter word and her journey with breast cancer…

Sex – the sometimes scary and painful 3 letter word for many of us cancer survivors. I went through surgeries, chemotherapy, radiation, and all of the horrible side-effects associated with these procedures. Nine months of struggling to stay alive, and now a year post chemo, I am just beginning to recognize myself. Sadly, hormones that may benefit our sex drive certainly affect our cancers (love those aromatase inhibitors), in turn affecting our bodies and affecting our libido. The research I’ve read says that about 70% of women who have had breast cancer treatments have some sort of sexual dysfunction, as opposed to 40% of women without breast cancer. Is there sex after cancer? Once intercourse was exciting, exhilarating, yet now I have a “sexual disorder/problem.” And I didn’t bring this upon myself – ahhh cancer, the gift that keeps on giving!

I have an incredibly loving patient husband who has been an amazing caregiver. And he’s waiting for me to give him the “come-here” eye. Most of the time he’s patient, sometimes he’s frustrated. I try to explain to him that my lack of sex drive is complicated. It’s not about him – really, it’s about me – emotionally and physically. But I’m tired of this entire process being about me!

I’m just beginning to be able to look at my body in the mirror and be OK with my reflection. Lopsided breasts, incisions, discolored skin, weight gain, hair loss, gray circles under my eyes – I’m alive, but there certainly have been sacrifices. Sexuality and femininity are both terms I’m having to redefine – and this has had an impact on our intimacy. (more…)

A Breathtaking Coincidence

March 12, 2014

Tiff SmilingA few weeks ago we introduced Tiffany Mannino who is sharing with us personal journal entries written in letter format penned to her unborn daughter while traveling through her breast cancer journey. In her collection of letters Beautifully Broken: Letters From a Girl/Woman/Human in Progress she reflects on her five year journey with letting go of the past, facing fears, learning to love, finding happiness in the moment, and realizing that she is exactly where she is supposed to be in life. Surprisingly, the collection of letters began with the one you will read below, two months before Tiffany would learn that she had breast cancer… 

October 18, 2009

Dear Lola,

As you already know, I absolutely love inspirational quotes. I find them to be daily reminders of what is truly important in life, especially when we are caught up in the noise and busyness of our daily routine. One of my favorite quotes is “Life is not measured by the number of breaths we take, but the moments that take our breath away.”

Well, today I experienced a moment that took my breath away, and it came at a most unusual place…the hair salon!  I wouldn’t say this moment took my breath away in a spectacular way like seeing the sunset on the ocean.  No, this was quite different. It was more of a brief pause in the beating of my heart and a moment of quiet reflection.

As my girlfriend was cutting my hair, the receptionist came up to us and said that a client unexpectedly showed up without an appointment and wanted to briefly speak with her.  I could tell that Amina was frustrated and explained to the receptionist that she was too busy to stop at that moment. Suddenly, a woman appeared from across the room and weakly called out Amina’s name saying, “Do you remember me?  I just have a really quick question for you.” Amina slowly walked over to her, and with trepidation the woman lifted off her hat only to reveal an almost bald head that had the slightest bit of blonde peach fuzz growing all around it.  The woman choked up and with tears in her eyes whispered to Amina that her hair was starting to grow back, and she just didn’t know what to do with it. (more…)

Veza and Living Beyond Breast Cancer

March 7, 2014

2 One of LBBC‘s newest shop to support partners is Veza, a very unique and charitable company, founded by a a very unique and charitable individual. Read his personal story about why he felt compelled to start his company and why he chose to eventually partner with LBBC from the Veza’s point of view…

The unfortunate commonness of breast cancer was one of the main reasons that Brandon Michaels, founder and brainchild behind Veza, felt an immediate connection with Living Beyond Breast Cancer. However, after learning more specifically about LBBC’s goals and mission, Brandon was sure that this was a cause worth support and partnership. While breast cancer foundations are vast and range in size and mission, Brandon was immediately drawn to the cause behind LBBC and the powerful impact that the foundation continues to make. It is refreshing and unique to find a foundation who puts a priority on teaching those who have been diagnosed and their families how to cope with the disease. LBBC is one of a few organizations in which patients are put at the forefront by offering programs and services unique to their needs and personal circumstances.

Brandon is thrilled to have partnered with LBBC, through his company Veza, as both are dedicated to helping those diagnosed and their families by providing access to information and services that aid in the battle of the devastating disease. The partnership will allow Brandon to contribute a significant donation to the foundation through the support of individuals like you. With each purchase of the Pink on White wristband, you too can support the cause and in a fun and fashionable way.

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About Veza

Brandon’s inspiration for Veza began with a passion for two things: style and philanthropy. He wanted to combine this passion for style with a desire for social good and to show others that supporting a cause you believe in is something worth doing. Realizing that wrist-wear often lacked design innovation, he envisioned a sleek, visually appealing collection of wristbands. With that, he partnered each Veza wristband with a unique charitable cause, ultimately giving the buyer the choice of the color they want to wear, or the cause they want to support.


Today Veza features 12 sporty yet elegant wristbands for men, women and teens. Each wristband supports a unique cause that was personally chosen by Brandon as a charity that shares similar goals and values. Purchase your Pink on White Veza in support of Living Beyond Breast Cancer here.


Beyond C4YW: LBBC’s Continuing Commitment to Young Women

March 3, 2014

LBBCbannerJean A. Sachs, MSS, MLSP, wrote the letter below to reflect on the end of C4YW and to remind you all that LBBC remains committed to serving young women affected by breast cancer. For more information about our upcoming events and programs, visit our website,

Dear Friends,

This year marks the end of C4YW, an event that was founded in 2001 by Living Beyond Breast Cancer (LBBC) to address the needs of women diagnosed with breast cancer under the age of 45. The following year, we invited the Young Survival Coalition (YSC) to co-host the event with us.

Over the past 13 years the conference became the largest of its kind. LBBC and YSC worked as equal partners in developing the conference, marketing it and raising the funds necessary to meet the need. First and foremost in our partnership was our goal to provide the best information, support and networking possible for young women affected by breast cancer. We achieved that and so much more. More than 10,000 participants benefited from C4YW, and we allocated over $1 million in travel grants to bring women and caregivers to this unique, and many times transformational, weekend.

On behalf of LBBC, I thank you for your participation in the conference.

Last November, YSC informed us with the bittersweet news that they would be ending the partnership following the February 2014 conference. I want to assure you that while the C4YW brand will be “retired”, it in no way impacts the commitment LBBC has to serving young women.

LBBC has been serving young women since 1996, and our strong commitment to providing robust services for them and their caregivers remains steadfast. Currently, LBBC’s Young Women’s Initiative includes:

I am so proud of the rich, timely and compassionate programs LBBC offers young women through our Young Women’s Initiative. In the coming months, I will be working with the board and staff to identify new ways to add to our programmatic offerings that serve this important LBBC constituency.


Jean A. Sachs, MSS, MLSP
LBBC Chief Executive Officer
Toll-free Breast Cancer Helpline: (888) 753-LBBC (5222)
354 West Lancaster Ave., Suite 224
Haverford, PA 19041

Living Beyond Breast Cancer and Ally Organizations Host Triple-Negative Breast Cancer Awareness Day Twitter Chat

February 28, 2014

TwitterChat_Event Banner

In recognition of Triple-Negative Breast Cancer Awareness Day, Living Beyond Breast Cancer (LBBC) has partnered with Triple Negative Breast Cancer Foundation and Triple Step Toward the Cure to host a free, interactive Twitter chat Monday, March 3, 2014 at 7:30 p.m. ET.  According to LBBC’s Vice President of Programs and Partnerships, Catherine L. Ormerod, MSS, MLSP, the one-hour event will “feature experts, advocates and women diagnosed with triple-negative breast cancer.  Triple-negative breast cancer is a form of the disease that is estrogen-receptor negative, progesterone receptor-negative and HER2 negative.”


During the first 40 minutes of the chat, panelists will tweet responses to commonly asked questions about TNBC with a focus on research, treatment options and lifestyle and eating habits that have the potential to reduce risk of recurrence. Participants will then have the opportunity to ask panelists questions. A transcript of the chat will be posted at on March 4. To participate, individuals must have or gain access to a Twitter account or a Tweet chat application and enter #TNBCchat into the search bar on the account. Additional directions on how to participate may be found on


Triple-negative breast cancer accounts for 10-20 percent of all breast cancers diagnoses in the United States, and most often occurs in young women, African-American women and women who have mutations in the BRCA1 gene, though anyone can be diagnosed. “I’m excited that LBBC is using Twitter to offer people the chance to learn more about this specific breast cancer diagnosis and connect with experts to address their concerns,” says Josh Fernandez, LBBC ‘s writer and web content coordinator, who oversees the promotion of LBBC’s programs and services via the organization’s social media platforms.


To learn more about the meeting or to register, visit or call toll-free at (855) 807-6386.

Blog Back: Finding Meaning Through Spiritual Questions and Evaluation

February 17, 2014

AshleyBurczak“Blog Back” is our monthly column that featuring thoughts and stories from the Living Beyond Breast Cancer staff. This month’s columnist is Ashley Burczak, MDiv, LBBC’s volunteer coordinator. In this blog post, Ashley discusses spirituality, including how it is different, yet not mutually exclusive from religion, what it has the potential to do and the kind of spiritual questions you may ask yourself during your breast cancer journey.

When people hear the word “spirituality,” they often think of religion, but spirituality is really a much broader term. It refers to anything that you feel gives your life meaning, and even to the questions you are asking about meaning—questions like “what is important to me?” and “am I living my life the way I want to?” I believe that everyone has some way of making meaning in life, and that means that everyone has spirituality, even if they identify as completely nonreligious.

Many people, when initially asked whether a breast cancer diagnosis brought up any spiritual questions for them, will say that it didn’t. They may answer this way because they don’t consider themselves religious and don’t think that they could have a spiritual life without a religious faith or belief in supernatural phenomena, or because they are very religious, and think of “spiritual questions” as indicating doubt in their faith—something they try hard to avoid.

In truth, I haven’t spoken to many people with a cancer diagnosis who haven’t had some kind of spiritual issue come up in the course of diagnosis and treatment. A diagnosis of a life-threatening illness brings up the reality of death, and facing death has a way of making us reevaluate life, whether we have strong faith or no faith at all. (more…)

The Search for Common Ground In Advocacy

February 13, 2014

The U.K.-based Pancreatic Cancer Action launched a controversial public service announcement that got the attention of the media and cancer advocates worldwide. LBBC’s Janine E. Guglielmino, MA, director, publications and strategic initiatives, writes about the campaign, and the importance of finding commonality in the cancer advocacy community.

Many of you have already seen the controversial public service announcement “I Wish I Had …” from the U.K.-based Pancreatic Cancer Action. The video PSA opens with a man and a woman, newly diagnosed with pancreatic cancer, wishing they had been diagnosed with testicular or breast cancer instead. Next, scrolling text shows the 5-year overall survival rate for pancreatic cancer, which in the U.S. ranges from 14 percent in stage I to 1 percent in stage IV.

The ad is powerful, but it is also wrongheaded and insensitive. It paints breast cancer as a single disease, and reinforces the pervasive and incorrect belief that breast cancer survival outcomes are universally high. It minimizes the physical and emotional trauma breast and testicular cancers leave in their wake. And it dismisses the tragedy of the approximately 530,000 people worldwide who die each year from these two diseases. (more…)


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