Archive for the ‘fear of recurrence’ Category

Blog For Mental Health 2014: The Emotional Impact of Breast Cancer

May 14, 2014

mentalhealthblogdayToday is Mental Health Blog Day 2014, a Mental Health Month initiative from the American Psychological Association. As a contribution to this day, we wanted to acknowledge the emotional impact of breast cancer, in addition to sharing resources and letting you know that you are not alone.  

Whether you just heard the words “you have breast cancer,” are years beyond treatment or living with metastatic disease, it is likely that you experienced or continue to experience a range of complex emotions due to this major life change. At LBBC, we are dedicated to helping you cope with or manage these feelings by connecting you with trusted breast cancer information and a community of support.

In recognition of Mental Health Month and Mental Health Blog Day 2014, we wanted to highlight programs, resources and inspiring personal stories by men and women affected by breast cancer.

First and foremost, we have a toll-free Breast Cancer Helpline (888-753-52220) answered live from 9 a.m. to 9 p.m. ET. Staffed by volunteers who have been diagnosed with breast cancer, our Helpline will connect you with someone who cares and knows what you’re feeling. Call today or when you’re ready!

We also have some upcoming programs as well as podcasts and presentations of previous events, many of which you may find helpful: (more…)

Our New Vision and Mission

August 20, 2013

2012JeanSachsHeadshotVer2Web

This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

May 3, 2013

2012JeanSachsHeadshotVer2WebBy Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

  • What is your perspective?
  • What questions does this article prompt for you?
  • What are your concerns for your health or well-being, based on what you learned?
  • Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.

Living Beyond Breast Cancer and Metastatic Breast Cancer Network Release New Publication

January 8, 2013

For Immediate Release:

GUIDE FOR THE NEWLY DIAGNOSED JOINS GROWING RESOURCE LIBRARY FOR WOMEN WITH STAGE IV DISEASE

MBCS: Newly Diagnosed

January 8, 2013; Philadelphia, PA | Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Network (MBCN) have announced the release of a free publication to help address the needs women have in the first months following a diagnosis of metastatic (stage IV) breast cancer. The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is the newest title in LBBC’s growing library of Guides to Understanding Breast Cancer, free publications designed specifically to empower women with the information needed to make the best and most informed decisions for themselves and their families when facing a breast cancer diagnosis and considering options for treatment and disease management.

As someone living with metastatic breast cancer, Shirley Mertz knows firsthand of the physical and emotional impact of a stage IV diagnosis. Mertz, the president of MBCN, reflected on her personal experience and commented, “Most new metastatic breast cancer patients feel overwhelmed with anxiety and a loss of control over their lives. This new publication will remind women that knowledge is power, help them find courage to educate themselves about metastatic breast cancer and hopefully open the door to better treatment selection and outcomes.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is designed to help women navigate the first few days, weeks and months after a first-time, stage IV breast cancer diagnosis or metastatic recurrence. The guide focuses on medical, emotional and practical concerns with the goal of helping readers to understand the biology of metastatic disease, form questions they may need or want to ask and provide available resources that improve emotional and physical wellness.

“Living Beyond Breast Cancer and the Metastatic Breast Cancer Network worked together to create this resource to help women become their best advocates,” said Jean A. Sachs, MSS, MLSP, LBBC’s chief executive officer. “This guide will help women understand the tests and treatments they may undergo and address the impact that metastatic breast cancer can have on emotional well-being.”

Nearly 150,000 people—women and men—are living with metastatic breast cancer in the United States and while a diagnosis of this type is life-changing, advances in research and treatment have made it possible for many to live longer, more fulfilling lives. LBBC and MBCN worked diligently to ensure that this guide was available to help bridge the gap between initial diagnosis and life beyond.

“I wish something like this had been available to me when I was first diagnosed, for my benefit and the benefit of family and friends who had—and still have—so many questions,” says Cindy Colangelo, a member of the consumer advisory committee that reviewed the guide’s content for accuracy. “Hopefully, this guide will help people acknowledge the elephant in the room that no one wants to discuss. Our goal is to provide a greater understanding of metastatic breast cancer and help affected women and families move forward by answering questions, providing information and giving hope.”

In addition to Colangelo and other women living with metastatic breast cancer, the guide was also reviewed by LBBC and MBCN staff, health care professionals, medical and surgical oncologists, social workers, nurses, researchers, and a palliative care specialist, led by William Gradishar, MD, of the Feinberg School of Medicine at Northwestern University.

“As a group facilitator, I’m excited to present this guide to patients who seek wisdom, guidance and support,” says Marie Lavigne, LCSW, OSW-CAs, an oncology social worker and a member of the medical review team. “As with all of LBBC and MBCN’s offerings, it provides a cornerstone to the essential needs of women diagnosed with metastatic breast cancer – clear, honest information, hope and inspiration when they need it the most.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is divided into six sections written in clear and easy-to-understand language. Individual copies of the guide are free and can be ordered online at lbbc.org or by calling (610) 645-4567. Larger quantities may also be ordered for a small shipping and handling fee. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series and through MBCN. LBBC’s titles are: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects and Understanding Palliative Care. MBCN’s titles are: Diagnosis: Metastatic Breast Cancer…What does it mean for you? and Get the Facts.

About Living Beyond Breast Cancer
For over 20 years, Living Beyond Breast Cancer has been providing educational resources and support services to women of all ages who have been diagnosed with breast cancer. LBBC helps improve the quality of life for these women by empowering them with the information they need to make the best and most informed decisions for themselves and their families. National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are just a few examples of the services that are provided, always at little or no cost.

If someone you know has recently been diagnosed, is in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer, LBBC can help. For more information, visit lbbc.org, call (610) 645-4567 or download a free copy of Empower, LBBC’s general information brochure.

About Metastatic Breast Cancer Network
The Metastatic Breast Cancer Network, a national, patient-led organization, works to raise awareness of metastatic breast cancer within the breast cancer community and public. MBCN encourages women and men living with the disease to raise their voices to demand support, resources and more research for metastatic disease.
MBCN provides education and information to metastatic people and their caregivers. Visit mbcn.org or call (888) 500-0370 to access education, support and advocacy resources.

Randi Rentz: Survivor’s Guilt

December 28, 2012

As we all all coming off of the excitement and possible exhaustion of the holidays to ring in the New Year, the LBBC Blog is happy to welcome back recurring writer, Randi Rentz, and she discusses a topic that many diagnosed women have experienced–Survivor’s Guilt–and how she plans to let it go.  Along with Randi, we here at LBBC wish everyone a beautiful and joyous New Year with health, happiness and hope in the future.

Have you ever wondered why you were diagnosed with cancer? If you have, stop it right now! I’m serious. I’ve never wondered why I was diagnosed with cancer. I can truly say that is an honest statement. Many people have asked me, “Why on earth would you, a young, healthy, happy person with no family history of breast cancer get breast cancer?” Even when other people wondered, I never have.  In my mind and heart I figured that “Why?” wasn’t the point. I had “The Big C.”  I had to deal with it. I had to move on and look ahead.

Since my diagnosis, I have had four friends die of cancer and another one who will die soon. All were young, healthy and happy people. Some had no family history, while others did have a family history.

My question is: “Why did I get what I got (a treatable cancer) and they get what they got (a life limiting form of cancer)?” Do you know I think about this Every. Single. Day. Sometimes this thought makes me feel so morose. Sometimes it makes me feel anxious. Sometimes it makes me feel remorseful.

This is Randi

As I think about my friend who is fading, I’ve come to realize what’s going on: I am experiencing a version of survivor guilt, yet again. It is common to feel guilty about having survived when others died. Now, this typically refers to catastrophic events such as 911 or an earthquake or some other disaster (no reason to go on with examples and make myself feel shoddier!). I happen to think that a cancer diagnosis (of any kind!) is pretty darn earth shattering. Don’t you? When I received my diagnosis, my world stopped. Completely.

What I’ve learned is that this feeling of guilt is part of being human. For me, it is a way of searching for the meaning of my survival vs. another person’s fatality. Normalizing these feelings doesn’t necessarily make me feel better, though. There are no two ways to say it. Anyone who has had a cancer diagnosis is forever changed. There. I said it.

When I lost my first friend to cancer, I felt paralyzed. Sessions with a social worker helped me be productive and rational. I certainly did not want to continue to go down an unfortunate road every time I lost someone I cared about.

Today, I admit my survivor guilt still brings a few issues. For some people, survivor guilt can cause despair, rage, and guilt that may even compromise their physical health and well-being. UGH.

Believe me I’m thrilled to be where I am. I’m able to speak to other people about cancer and their emotions and feel so fortunate. I really do. I don’t know what’s in my future. None of us does. I can tell you through this ordeal, I have faced uncertainties, challenges, and sorrow. I know that I have also learned lessons I couldn’t have learned any other way.

What I know for sure is that life is a precious gift; however after losing my mother to cancer, I actually already knew that…I guess it’s just been reiterated – in a BIG WAY. For now, it’s my time to live.

To learn more about Randi you can peruse her blog or read excepts from her book, Why Buy a Wig…When You Can Buy Diamonds!, when you visit her website.

Julie Anne Mauro: “Strength in the Face of Great Uncertainty”

November 26, 2012

Sometimes getting out your feelings can be just the therapy you need. Living Beyond Breast Cancer offers a “Writing the Journey” Seasonal Writing Series that offers instruction and encouragement for women affected by breast cancer to use this creative outlet to express themselves. On this second installment of the LBBC Blog‘s Writer’s Corner, Julie Anne Mauro shares who own musing on diagnosis and LIVING with metastatic disease.

I Quit Cancer - April 30, 2012 – after an extensive month of tests and trying to get on a drug trial and finally getting on a treatment that is working.

I quit cancer

Seriously, I quit

It’s not a fun job

It certainly doesn’t pay well

And it just takes up too much of my time

I’m tired of Pink

I’m tired of Anti-pink

I’m tired of just being a number

Tired of being a patient

Tired of blood draws and infusions

Tired of looking in the mirror and not seeing myself anymore

Just the battle scars

Just the bitterness

Tired of thinking, will this be the last time I ……

*          *          *          *          *

Untitled – August  7, 2012

Can you do something more than just a prayer?

But fight for me

Fight for me

Show the world that I was once there

Fight for me

Oh fight for me

Let me know that somebody really cares

Fight for me

Oh fight for me

Show me there’s more than blank and empty stares

Oh fight for me

Oh fight for me

Even when I’m weary and on my last breath

Fight for me

Please fight for me

*          *          *          *          *

Julie Anne is a recent transplant to Arizona from New Jersey,  married, and a mother of 2 boys (8 and 14). In July of 2009, a week before her 44th birthday, she was diagnosed with HER2+ breast cancer. After chemotherapy, a bi-lateral mastectomy and radiation, in May of 2010 her came up clean. She “beat cancer.” One month later, she found a lump in her chest wall–her cancer had spread to the lymphatic system and she was diagnosed Stage IV.  Since then the cancer has spread to her lungs, but she is still here and living strong every day with Metastatic disease.  Her motto is “Strength in the face of great uncertainty.”  Writing has been a great release for her and a way to express herself living in a world of unknowns.

Visit the LBBC Events Page for more information on the “Writing the Journey” Fall Writing Series

Suzin Glickman: “Presently” Living

November 12, 2012

Suzin Glickman is a former Long Island girl, survivor, professor, lawyer, mother, wife and daughter who found writing and creative expression to be one of the most therapeutic and inspiring ways to cope and heal from her cancer diagnosis.  She is pleased to share some of her favorite original poems with the LBBC blog readers for our bi-monthly series, Living Beyond Breast Cancer’s Writer’s Corner.

Salad Bar Marred - April 2012

They all went to the salad bar

I stayed back

and watched from afar

A rush of emotion

Swelled

Over me

Just from watching

Their backs to me

A seemingly insignificant moment

Then came that haunting

Once more

It comes as hauntings do

When you least expect them

Catching you quite unprepared

At a moment unaware

Shaking me at my core

Tears welled up in my eyes

Feeling queasy

Muscles and nerves reacting

My thought

Alarmed

How can this be?

The four of them

Will go on without me

I watch them move along the line

A outsider

Watching

Spying on them

Like a fly on the wall

Not accepting

I could be dying

We are out

Having family fun

And I

Have come undone

All because it is all about

I want to be part

Not apart.

*          *         *          *          *

Life’s Adjustments - April 2012

Let’s talk about life’s adjustments

The ones we have to make

When life

Gives us strife

And of our expectations

There is a breach

Our original plans

We realize

We might not reach

Those hopes and dreams

Upon which for years

We made plans,

Had aspirations

We will have to compromise

Economics, jobs, relationships, religion, family, health

At first, all these have their allure

Some people have luck

That is for sure

But few can escape some kind of kink

In what is planned, I think

Hopefully, one can find a cure

When life drops upon you manure

And endure

And so these adjustments

We do not always easily or happily make

Are life’s big message

Hanging on our door

( sarcastic, “oh, goody”)

We are now mature.

*          *         *          *          *

Suzin is now “presently” living in the Washington D.C. area with metastatic breast cancer and all that comes with it. Suzin started blogging in January 2012 after her re-diagnosis, occurring just at the 5 year mark since her first round of breast cancer. Suzin hopes to strike a deal with whomever it concerns in regard to living in this condition for a long time, maintain her sense of humor and be present for her family. Her goal is for readers of her poems get an “Ah Hah! Me too! “reaction and that the poems make them smile and touch a chord as well. To read more of her work, visit her Blog, Suz’s Muzes.”

Head to the LBBC Event Page for more information on our “Writing the Journey” Fall Writing Series.

Jeanette Caligiuri: Triple Negative, Triple Threat

July 2, 2012

On Tuesday, July 10th, Living Beyond Breast Cancer will host a free Community Meeting addressing the diagnosis of triple negative breast cancer.  In preparation for that event, LBBC would like to introduce Jeanette Caligiuri, co-founder of Faith & Hope Boutique and an eloquent triple negative breast cancer survivor.

I am sure we all vividly remember the day that our lives changed forever when our worst fears were confirmed; “I am so sorry…you have breast cancer.” I wish I could say I was stunned or shaken, but what I was feeling was almost relief…

Breast cancer has always been part of my life; it very hard to remember a day that we didn’t coexist. The disease has touched every female family member on my maternal side. I have childhood memories of spending Thursdays at Pennsylvania Hospital in outpatient chemo with my mom who was diagnosed in her late twenties. I often assumed that everyone’s mom was bald and unable to hug too tightly because of her latest “boo-boo.” My mother was taken too soon, barely thirty-five, her mother in her early fifties and the chain continued…to me. To some, my story is sad, but to me it’s empowering. I armed myself with knowledge and preventative care. When the enemy came knocking, I would be prepared. I had an army of three who I felt with me through every surgery, each round of chemo and numerous setbacks. I had the knowledge that I was a BRCA1 mutation carrier—the only puzzling thing about my diagnosis that I was to learn was that my breast cancer was triple negative.

“What does that mean?” I naively asked the surgeon, “Negative is good, right?” I heard myself scream with fear. “Not exactly” are not words of reassurance from your doctor as he went on to explain and rattle off statistics that I was no longer able to comprehend. My focus was on aggressive, poor prognosis, higher mortality and many more awful adjectives.

Upon returning home, I immediately hit the web and researched into the wee hours of the morning. I remember waking the next day paralyzed with fear that I would never see the youngest of my three sons’ graduate elementary school, let alone Start College. I vaguely remember time passing slowly until the following weekend arrived, when I attended my first annual Fall Conference: “News You Can Use” hosted by Living Beyond Breast Cancer. That morning, before the first keynote speaker took to the stage, I was embraced into the sisterhood that spoke to my fears and filled me with resolve. If anyone was meant to be in attendance that day, it was me, as a key focus of the conference was on triple negative breast cancer. I learned so much that day and left with renewed spirit and most importantly, hope.

Now that I am a six-year survivor, I have taken many lessons from this journey: that we don’t get to choose what happens to us in life, but we do get to decide how to use it. My experiences have given me a voice to speak to young women while volunteering for groups like Living Beyond Breast Cancer and Young Survival Coalition. I have been rewarded the gift of purpose by co-founding my survival shops, Faith & Hope Boutique. But the greatest lesson I have learned is that good things come in threes: the legacy of my Grammy, mom and myself. My three sons, who I have watched graduate from elementary and high school. That we all have a past, can live for today and tomorrow is future enough to plan for. That most importantly, a triple negative diagnosis what not my ending, but a new beginning.

For more information about Faith & Hope Boutique, a shop fully staffed by survivors who are ABC and BOC Certified and rely on their own personal post mastectomy experiences to aid in your recovery, visit their website. Also, if you’re interested in learning more about triple negative breast cancer, head over to the LBBC website to order or download the Guide to Understanding: Triple Negative Breast Cancer.

Michele Roque: The Art of Survivorship

June 5, 2012

At a recent meeting of Living Beyond Breast Cancer‘s Writing the Journey series, participant Michele Roque asked if she could share some of her writing with the group. Here, LBBC shares what she read aloud to the ladies and fellow survivors in the writing group.

“Her writing felt like such a gift – a gift of words – and one that we wanted to share with fellow survivors who visit the LBBC website.”  -Alysa Cummings, Group Facilitator of Writing the Journey

The Art of Survivorship

By Michele Roque

“Be as a bird, perched on a frail branch that she feels bending beneath her,
Still she sings, sings, knowing she has wings.” -Victor Hugo

I have found that being a survivor means being afraid and brave, often at the same time. I think survivors understand that we are all connected by the inevitability of adversity. Our lives are fragile, but if we band together, connecting ourselves to family, friends and fellow survivors, we gain courage and strength.

My encounters with survivors have been both inspiring and humbling. They may look like ordinary people, but they have accomplished extraordinary feats.

Through my journey, I have tried to summon a fraction of their strength. If you are open, you’ll encounter fellow survivors who are ready to lend a shoulder and a hand.

The journey of life is one we all travel, and as we all know, it can sometimes be an uphill climb; and at other times a smooth coast. Often we are moving fast, because that’s what we think we are supposed to do. And then some difficult challenge stops us in our tracks, forcing us to slow down and hopefully regroup.

I have found that survival requires being mindful of today and being open with hope and faith, even during our most difficult struggles. For it is this that invites grace, joy and courage into our lives.


 Living Beyond Breast Cancer will host another Writing the Journey Series in the Fall. Check back to the LBBC Blog for more insights from Alysa Cummings and future Writing the Journey creations.

Video Blog Series: Advocacy in Action on Metastatic Breast Cancer – Part Eight

April 27, 2012

On April 28th and 29th, 2012, Living Beyond Breast Cancer will host its Sixth Annual Conference for Women Living with Metastatic Breast Cancer which is a one-of-a-kind educational program designed for women living with metastatic disease, caregivers and healthcare providers. During the four weeks before the event, the LBBC blog will feature a series of short videos featuring our own Elyse Spatz Caplan, Director of Programs and Partnerships,  with Advocacy in Action discussing the needs of women living with metastatic breast cancer.


This final video tackles a discussion on the use of the color “pink” and what that means in the metastatic breast cancer community.

Elyse Spatz Caplan, MA, Director, Programs and Partnerships

Video Link: Metastatic Breast Cancer Discussion – Part Eight

~

Visit our website for more information on the Conference for Women Living with Metastatic Breast Cancer and to Register  for the April event. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series.  Later this year, LBBC will produce a guide for women newly diagnosed with advanced disease.


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