Archive for the ‘triple negative breast cancer’ Category

Susan Navissi: Feelings from Afar

September 1, 2012

Living Beyond Breast Cancer hosts 3 national conferences14 national teleconferences and offers a toll-free Survivor’s Helpline that we know many women across the United States utilize. However, women all over the world have been affected my breast cancer and we are honored to know that are services are reaching to other parts of the world. For this month’s first installment of “Living Beyond Breast Cancer’s Writer’s Corner,” we welcome Susan Navissi, a strong survivor from Berlin, Germany.

Diving

breathe breathe dear, don’t be scared
- concentrate on your work, survive
and dive dive – through these dark times
where fear is your companion
and love has to fight so hard to come through

and then, when you come up after a dive
look around and see -clear now
what you need , whom you want, where you want to be
and why this life shall be lived fully

uma soona

September 2011

* * * * * * * * * * *

Agreements

this precious beautiful cancer sister wrote:

it may sound strange but what I did was asking it to go away
suggesting it may be a star in the dark blue sky
so I will not forget, for I do like to watch the stars.

dearest sister, no it does not seem strange
same did I – drowned mine in the little lake
asking it to never ever come back
for I do not need it, but do like to watch the water.

what else do we do while healing?
crying rivers, wearing our wellingtons to jump in the puddles
convulsing in pain, reading the news who shall be bombed next
hugging our loved ones, drinking each good word, look and touch.

whether healthy or ill
listening to lullabies of the axis of evil
may make you think
about human kind

November 2011

antiope

* * * * * * * * * * *

(*Note: As Susan’s native language is German, we felt it only appropriate to include some of her work in her own “voice.*)

Rosennacht

Die erste Nacht war voller Rosenduft

Küsse regneten auf meinen Körper

weich und zärtlich

von den schönsten Lippen

Ich werde arm sein, erklärte ich,

keine Bücher mehr und keine Schuhe!

dann werden wir barfuß in die Bibliothek gehen,

sagtest du- und ich habe dir geglaubt

Immer wollte mein Körper neben deinem liegen.

Blind war ich und taub

Vergewaltigende, Furie, Irre, Schamlose

und zärtlich, sorgend und liebevoll.

Nach allem, was  mein Körper kennen lernte,

Holocaust, Fukushima und Mansonism

bin ich trotzdem noch erstaunt

über das

was war

damals,

in der Nacht als alles nach Rosen roch…

du, ich, die Nacht und die Zukunft, die zwischen uns lag.

Kali

* * * * * * * * * * *

“I send my best wishes and love to all my sisters out there, being all brave and enduring this.”

Born in Berlin, Germany, Susan is a mother of a 24 year old son and was diagnosed with a triple negative tumor involving the lymph nodes in  june 2011 at age 44. In the middle of political upheaval, the responsibility of success  at work phase and in love after a bad time; it just did not fit. Fortunately, Susan had access to her feelings of fear and terror and expressed them in poems and paintings. Susan has made is through chemo, surgery and rehab and lives every day saying “I am healthy and will become very old.” Living Beyond Breast Cancer will be hosting another Fall Writing the Journey Series where survivors can creatively express and document their own feelings starting October 9th.

Judy Zwillenberg: Insights from an LBBC Intern – Part 2 of a 3 Part Series

July 30, 2012

The staff here at Living Beyond Breast Cancer is excited to have many new faces and strong minds in the office, with a special appreciation going out to our interns. In this second installment of her three part series, intern Judy Zwillenberg shares what she has learned while researching triple-negative breast cancer.

As an intern in the Education Department at LBBC, I have been assigned a variety of projects pertaining to different groups of women with breast cancer. For this blog post, I would like to discuss my research on triple-negative breast cancer (TNBC) and the projects associated with it. Similar to my work on the Young Women’s Initiative—which I discussed in my previous blog—I was asked to search for articles focusing on the quality of life for women diagnosed with triple-negative breast cancer. More specifically, I attempted to find out if women with triple-negative breast cancer identify themselves as “different” from other breast cancer survivors, and if any articles addressing psychosocial issues for women with TNBC existed. Unfortunately, there was not a lot of information available on those topics since, as expected, the medical world primarily discusses treatment options. Nonetheless, I read a plethora of articles and learned quite a bit about triple negative breast cancer.

To explain it simply (which, in all honesty, is not that simple), TNBC is a type of breast cancer that lacks estrogen receptors (ER), progesterone receptors (PR), and human epidermal growth factor 2 receptors (HER2). Because it does not have these three receptors, it is aptly named “triple-negative.” The reason why this is especially relevant is because many breast cancer treatments work by targeting ER, PR, and HER2 receptors. But, since TNBC does not have these receptors, other treatment methods have to be used. Many of the articles I found addressed this treatment dilemma, as well as provided me with an extensive background for my next project connected to triple-negative breast cancer: an environmental scan.

For this project, I looked through the websites of many organizations known to provide some resources to women with triple-negative breast cancer to see what specifically they have available. I found 14 organizations, and of those I categorized them according to what types of services they advertise. 11 of the 14 groups have an informative section on their site devoted to triple-negative breast cancer; however, most are brief and provide very little information. In fact, the majority of groups outline treatment options or a simple overview of triple-negative breast cancer instead of focusing on an in-depth explanation of the cancer, symptoms during treatment, and life as a survivor. Only 4 organizations have PDFs or publications available which extensively detail TNBC: CancerCare, Triple Step Toward the Cure, and LBBC and TNBCF jointly compiled the comprehensive “Guide to Understanding.”

From the environmental scan, I also found that not many organizations hold conferences or informative workshops for women with TNBC. This is somewhat understandable, seeing as not enough is known about triple-negative breast cancer, and it is difficult to provide information when there isn’t much available. However, this doesn’t explain why there are very few online or in-person support groups for women coping with TNBC. Even without up-to-date information on triple-negative breast cancer, organizations can run support services so women can find solidarity among others coping with triple-negative breast cancer. Unfortunately, this does not seem to be the case in the TNBC world.

This may seem disheartening, but it gives organizations like LBBC an incredible opportunity. We can work to fill this void, and provide women affected by triple-negative breast cancer with services they need and deserve.

Judy is a rising sophomore at Cornell University as a Biology and Society major.You can find more information about the triple-negative breast cancer at the Living Beyond Breast Cancer website. Come back next month for another peek into Judy’s work here at LBBC.

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.

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

April 20, 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 sixth video tackles the discussion on metastatic breast cancer research.

Elyse Spatz Caplan, MA, Director, Programs and Partnerships

Video Link: Metastatic Breast Cancer Discussion – Part Six

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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.

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

April 16, 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 fifth video tackles the discussion on diversity in the metastatic cancer community.

Elyse Spatz Caplan, MA, Director, Programs and Partnerships

Video Link: Metastatic Breast Cancer Discussion – Part Five

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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.

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

April 13, 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 fourth video discusses access to information, medical treatment, and insurance coverage.

Elyse Spatz Caplan, MA, Director, Programs and Partnerships

Video Link: Metastatic Breast Cancer Discussion – Part Four

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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.

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

April 2, 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 first video tackles the initial reaction to learning about metastatic breast cancer and the relevance of clinical trials.

Elyse Spatz Caplan, MA, Director, Programs and Partnerships

Video Link: Metastatic Breast Cancer Discussion – Part One

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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.

Your Fashion Bug of the week

October 10, 2011

Lisa Niedrowski is one of five vibrant and strong women selected to represent Living Beyond Breast Cancer during Fashion Bug’s Breast Cancer Awareness Month Campaign.  Throughout October the women’s clothing store, with nearly 700 stores across the United States, will support LBBC by donating 100% of proceeds from the sale of a one-of-a-kind inspirational tee and by asking their shoppers to make a contribution by rounding up their purchase to the next whole dollar.

For women who have been diagnosed with breast cancer, October is often a month filled with emotion. While every woman expresses their approach to the month differently, Lisa reminds us when the one fateful touch of her left breast changed her life forever.

I was honored to be selected as one of five women to share my story through a Breast Cancer Awareness Month campaign sponsored by Fashion Bug. The idea of the five senses became an alluring theme. Each of us have a breast cancer story, of course. But from person to person, our story is a reflection of one ideal sense that created the most appealing significance in our individual journeys. For me, it was my ability to touch.

In 2002, I was touched with cancer.   That year, became the year that forever shaped who I have become – it was the year, at the age of 29, I was diagnosed with Stage II Triple-Negative breast cancer.  For weeks I kept feeling my left breast and trying to figure out if the hard lump was just my imagination, a normal part of my breast or if I really did have a lump that seemed to be getting bigger each day.  It wasn’t until I said to my then husband, “I think I have a lump in my breast.”  And he replied “In your left one?”   My heart sank.  He too had felt it.  That started the beginning of one of the hardest years of my life. 

I lost a lot that year and in the few years that followed.  I lost my breasts.  I will never forget standing in a hotel bathroom at 4:30 am in New York City taking one last look at my breasts before my mastectomy.  I decided to have a bilateral mastectomy because I knew that every day moving forward, I would continue to feel, probe and worry about my right breast.   After my surgery, I lost the ability to effortlessly pick up, hold, or touch my babies without being mindful of my restrictions from my doctor and the pain.  I could no longer receive or give a much needed hug from and to those I loved without hunching over to protect myself.  My chest no longer felt  like it belonged to me.  It became the focus of so many critical and sideways looks from doctors determining the next steps of reconstruction – like a painter looks at a portrait deciding where to place the next brush stroke.  

I can barely remember what my breasts even looked like or felt like.  Thank goodness my now ex-husband and I made a plaster mold of my breasts and pregnant belly a year before which serves as my only reminder of what they looked like.  Quite honestly and gratefully, I think I prefer the way my ‘new’ breasts look versus my old ones despite some scars. 

Then began chemo.  My focus became about losing my hair because it signified that I could no longer hide that I was sick.  My two-year-old loved to run his fingers through my hair and so I knew I would have to shave my hair as soon as it started falling out for fear that in attempts to touch my hair, he would get a clump of it in his fist.  Late one Friday night, I ran my fingers through and I got the clump of hair.  It was ‘go time.’  Out came the clippers and followed by an awareness of a very cold and stubbly head.  It was sobering reaching up and touching the stubbles of hair. It solidified that I was a cancer patient. 

Now, eight years out, what I was permanently touched by was not the bald head, numerous doctors’ hands putting me back together, bandanas, needles for chemo or tattoos to align my radiation treatments.  Nope – they were all just things that helped me survive or a symptom of treatment that allowed me to survive.  What has touched me at my core is the resilience, courage and strength that is within us all.   

As many survivors know, you are often told you are a ‘hero’ because you have overcome cancer.  None of us actively sought to be touched by cancer, it sought us. When your back is against the wall and you have cried all the tears you have night after night, the fibers of what makes you strong and brave get touched and you get up the next day for another day to LIVE.  This is what has permanently touched me. 

When I think back to the photo shoot, I’m just blown away as I saw how my diagnosis and the diagnosis of the other four women touched the Fashion Bug staff, the LBBC staff and every other person involved in the shoot. Our stories are powerful and because of this initiative, our stories can touch other women’s lives as they realize that they DO NOT have to deal with breast cancer alone.

No matter what life decides to deal me, I will survive, accept and continue to be taught more about what I am made of.  Life is a roller coaster.  It will be full of wonderful highs and difficult lows but through it all, I am choosing to no longer feel the tight grip of the safety bar.  No, I am letting go and putting my hands up!

Touch – verb 1) to bring a bodily part in contact with, especially so as to perceive through the tactile sense: handle or feel gently usually with the intent to understand or appreciate; 2) to strike or push lightly especially with the hand or foot; 3) to lay hands upon with the intent to heal;  4) to leave a mark or impression on. 

Throughout Breast Cancer Awareness Month, Fashion Bug stores will donate 100 percent of proceeds from the sale of an Inspirational Screen Tee to support our educational resource Guide for the Newly Diagnosed and LBBC’s Survivors’ Helpline, a personalized matching service that connects women in similar circumstances in a confidential setting.

You can order online or find a store nearest to you!

A Whole Lotta Love

March 8, 2010

This entry was written by Jayme Gittings, our Manager of Individual Giving:

Pink boas, cowboy hats and fuzzy bras.  Sexy swimsuits, brassy tee shirts and pajamas.  A whole lotta attitude and a whole lotta love.

That’s what I found at the 10th Annual Conference for Young Women Affected by Breast Cancer

This year was my first experience, but it was a milestone 10th anniversary for participants.  Coming from all corners of the country and across the world, over 800 women arrived to learn more about breast cancer, treatment options and ways to improve their own quality of life.  I was lucky enough to join the Living Beyond Breast Cancer team to support the conference and was blown away by the experience.

Each woman I met touched me in a different way.  The teenager who was diagnosed at 14 and found a community of women to embrace her.  The 73-year old who was diagnosed in the 1965 and feels it’s her job to come every year and “hand out hugs.”  The research scientist eager to discuss healthcare legislation with Rep. Debbie Wasserman Schultz.  The Canadian advocate who found a world of information and possibilities in the exhibit hall, many unavailable in her country.  The German native who powered through her most recent round of treatment to attend and find fellowship thousands of miles from home.  The New York specialty designer who left with a wealth of knowledge about how to best craft beautiful clothes for women with mastectomies.

I was awestruck.  No bouquet of wilting lilies, this group wanted real information, real help, real support…the real deal.  They grabbed hold of the chance to talk openly and freely about their concerns, hopes and fears surrounding their diagnosis.  In workshops, they asked probing and specific questions.  They spent the in between time meeting up at networking tables for groups like “advanced (metastatic) breast cancer” and “very young diagnosis.”  And they relaxed and socialized with hundreds of other women who knew exactly what it felt like to be a young woman affected by breast cancer.

The weekend was an emotional one for me.  I have not been diagnosed with breast cancer, but I have loved and cared for many who have.  My mother was diagnosed with a rare cancer at the age of 40, with two young children and a blossoming career, but without the support of a conference such as this.  As a witness to this collective force of women, I could only stand awestruck. 

I hesitate to use the word hope, because it is such an intangible concept, ephemeral almost.  Rather, I felt the power and strength of the women in those rooms.  It was palatable and concrete.  It was as real as every woman who walked proudly through registration looking for answers and compassionate support.

I was proud, too.  Proud to be a small part of such amazing work. 

Next year I will be front and center at the 11th Annual Conference. Will you?

Let us know what you thought of the conference by leaving a comment below or posting it on our Facebook page.

Stay tuned for photos from the event!

No Two Women Are Alike

February 1, 2010

This entry was written by one of our volunteers, Phyllis Allen. Phyllis is a volunteer for our Survivors’ Helpline.

When I first started volunteering at LBBC, I became aware of an alarming statistic. When African-American women are diagnosed with breast cancer, they have a 38-40% higher mortality rate. If you add in the fact that triple negative breast cancer is more difficult to treat and more prevalent among African-American women (39% are diagnosed), the survival rates start to frighten women of color.  As an African-American breast cancer survivor, all of the stats above concern me.

When I was diagnosed with breast cancer, I decided to learn everything I could about the disease so I could talk to my medical team about my treatment and my chances of survival. There is still the perception in the African-American community that being diagnosed with breast cancer is a death sentence. Women are afraid of losing their breasts and worry about the side effects of chemotherapy, I.E., losing one’s hair. Some women are just afraid of any surgery, period. All of this leads to some African-American women delaying seeking diagnostic tests and treatment. As a result, African American women are less likely to be diagnosed at an early stage of breast cancer. Once we seek treatment at a later stage of the disease, it’s harder to get a positive outcome, and thus feeds into the perpetuation that a diagnosis of breast cancer is a death sentence.

My grandmother was diagnosed with breast cancer in January and passed away the following February. Granted this happened in the late 1950s, but a number of families have relatives who have waited too long to seek treatment. I took it upon myself to discuss my diagnosis and treatment with friends, family and colleagues so that we all could learn about breast cancer and hopefully, would be less fearful about the outcome. Women of color must be encouraged to be more proactive in preventing a late breast cancer diagnosis. This means conducting breast self-examinations every month and having regular mammograms depending on your age and family medical history.  While women complain that a mammogram is painful, it’s a lot easier to deal with that discomfort instead of having to tell your family that you have breast cancer.

African-American women must be able to afford health insurance that encourages preventative care.  As women we tend to put our needs last, but if we’re sick we can’t attend to the needs of our loved ones. It also means providing information to hospitals, health clinics, medical care and social service professionals who come in contact with African-American women who are at risk for and/or have been diagnosed with breast cancer. LBBC provides a lot of literature that people can read and understand so that they can have meaningful discussions with their health care team.

One of the more distressing things I have learned as a volunteer for LBBC is that a number of African-American women tell me that they refuse thetreatment plan recommended by their medical teams. The main complaint is usually that they want a more holistic treatment of their breast cancer. I always ask the women if they have a medical degree and, if they don’t have one, I insist that they speak to their medical team about their concerns. More and more physicians are listening to their patients’ requests for a treatment that is not so toxic, but it must be discussed in terms of each woman’s case. No two women are alike in every respect. I strongly believe that knowledge of treatment options is key to the woman committing to finishing the treatment plan that she and the medical team decide is best.

Bottom line: if there is mutual  respect  between medical care professionals and the women they serve, I think it could make a dent in the higher mortality rate of African-American women diagnosed with breast cancer.

 


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