Posts Tagged ‘young women’

My dear sweet Lola: I have the dreaded C-word

May 6, 2014

pink warriorA couple of months 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. Here is her first entry of 2010 where she takes a moment to look back on the highs and lows of the previous 10 years which culminated with her hearing the words “You have breast cancer” at the age of 36… 

January 3, 2010

Dear Lola,

Happy New Year, baby! I can’t believe that it is the beginning of a new decade already. I can clearly remember when the new millennium hit and how awe-inspiring that was. I can’t believe what changes the last decade has brought to my life. It was the best of times and the worst.

In summary, I married my teenage love, put my heart and soul into my teaching career, had a pulmonary embolism, watched someone I love battle addiction, divorced, traveled the world, bought a new house, watched two grandparents die, fell in love again and was engaged, broke off the engagement, was selected to film a design show pilot for HGTV, started my own interior design business, and ended the decade by being diagnosed with breast cancer. (more…)

Your Breast Cancer Experience in Six Words

April 10, 2014

Last fall, we started a breast cancer six-word memoir campaign to share your thoughts and experiences with the disease. Beginning this month, we will restart the project for 2014. Read below to learn more and to see our collection of mini-memoirs from 2013.

Kim Boyer's Six-Word Memoir for Oct. 23, 2013

Kim Boyer’s Six-Word Memoir for Oct. 23, 2013

Everyone has a story. For people with breast cancer, that story can be a roller coaster of complex emotions. As an organization with a vision of a world where no one impacted by breast cancer feels uninformed or alone, we at Living Beyond Breast Cancer provide you with many ways to tell your story – first-person stories and videos, profiles, stories found on this blog and most recently, our breast cancer six-word memoirs. (more…)

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.


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…)

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

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…)

Beautifully Broken: Letters From a Girl/Woman/Human in Progress

January 29, 2014

IMG_20131207_184541LBBC would like to welcome our newest blogger Tiffany Mannino! While Tiffany has had a long-standing relationship with LBBC this is her first (of many) posts for the LBBC blog. Her entries are a bit different in that she is sharing with us personal journal entries written in letter format she penned to her unborn daughter while traveling through her breast cancer journey. This letter is an excerpt from her collection of letters which she titled Beautifully Broken: Letters From a Girl/Woman/Human in Progress in which Tiffany 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. 

November 10, 2013

Dear Lola,

Well, I cannot believe it, but it has been almost five years since I started writing to you.  It began with an insomniac moment and an incredible urge to write down all of the thoughts that were exploding in my head. It started after hearing the devastating news that the adoption I had been waiting on for over 18 months was going to fall through.  This adoption news had come on the heels of a broken engagement the previous year.   (more…)

“Coming Out” with Cancer – Breaking It To Your Friends

January 8, 2014

Screen Shot 2014-01-07 at 6 29 42 PMLBBC blogger Nikki Black was diagnosed last year with breast cancer at the age of 23. Here she discusses how she handled revealing her diagnosis to those close to her, and what she learned while doing so.

When I received the phone call from my doctor, I knew immediately she was about to give me the Bad News. Her long sigh and tight voice over the phone told me long before her actual words that I had tested positive for breast cancer.

“I’m sorry,” she said, “It’s hard, when the patient is so young.” Tell me about it.

As a young woman dealing with breast cancer, it can be difficult to break the news to your friends for a number of reasons – not the least of which is reliving the shock and sadness that comes with that diagnosis with every new phone call you make. I worried about how people would react and who was appropriate to tell. I worried that people would be upset with me for not telling them sooner, or telling them after I had told another person. I added anxiety on top of anxiety on top of that diagnosis during a time when I should have been focused on accepting the news myself.

So, if I can, I’d like to spare anyone this anxiety and share what I’ve personally learned about “coming out” with cancer to your friends.


So What Is Survivorship?

December 17, 2013

Rachel PappasRachel Pappas is a health writer and mother of one and here she shares what survivorship means to her…

I had a “scan scare” a couple of weeks ago, and I wasn’t going to talk about it— not before I had a clue what was going on— but I couldn’t contain myself. So a few days ago I burst out to the facilitator of a support group I’m in during a private conversation.

In one super-fast spurt I said:  “I went in to my general practitioner a coupla Mondays ago— for something totally unrelated to cancer”— and she asked, “Did your oncologist talk to you about your CT scan?” I said, “Noooo.”

I was 46 months out (yes, I still count them – do you?) from my diagnosis, and I was finally relaxing, assuming everything was okay if the call didn’t come within a week of whatever test I’d last had. I would not necessarily recommend not calling for your results, but my doctor watched me ringing my hands one day and said, “Rachel, you let me worry for you; I will call if there is reason to.”

(By the way, I did end up hearing from him shortly after; and I’m adding this verbiage to let you know, in my case, knowing my doctor well, I trust he will call—I just don’t want to give you a double message on whether to follow up or not.)

But going back to the conversation with my friend, Denise, who runs my support group: “[The scan scares] are part of survivorship,” she tells me.

Then she went into the weird thing that showed on her brain that turned out to be nothing. And she told me about the afternoon she was trying on sports bras at Kohl’s, just after finishing treatment. She saw a red, angry patch on her chest. She freaked! Ran to her friend’s house –on the spot— for a quick feel from her friend’s husband. I should mention, he’s a doctor. They talked and pieced it together: She and her husband had made love the night before; he’d nuzzled against her chest and given her a good beard burn!

The cancer scare stories aren’t always this light. Sadly, some of my friends and I’m sure some of yours, maybe even you, yourself, don’t always get the news you want when the results come back.

But all I can say is, Denise was right: survivorship is about life never being quite the same again. And so we have to learn as best we can to live in the moment. To not make up our mind that every pang, bump or ache is “c”, though I know it can be hard, especially if you are newly diagnosed, or if you learned you have metastasized. I think we need to try our best to not give our attention every hour of every day to this invader we did not welcome into our bodies.

Sometimes we have to look “c” in the eye— to get into the doctor when we need to. To talk about our fears when we need to.

But it’s good to say, ok, that’s all the attention you get today, and put it on a shelf. Breathe, relax, go for a walk. Maybe light some candles, run a lavender scented bath and slip into the hot tub for an hour of relaxation.

Because survivorship is about knowing some things are never the same again, and it’s about taking back what control is ours. So we enjoy this life that we, of all people, totally get is something we want to get as much mileage from as we can. And we want to do more than just spin the odometer; we want the trip to be a really good one.

Rachel Pappas is a breast cancer survivor and long-time health writer. She has a website: And she is author of Hopping Roller Coasters, about her daughter and herself, both diagnosed with bipolar disorder. And then comes cancer… 

LBBC recently hosted a community meeting in the Philadelphia area about breast cancer survivorship and you can download a podcast of the meeting or the power point slides here


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