A Conversation with Kathleen Swiger about LBBC’s Survey of Women With Triple-Negative Breast Cancer

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Kathleen Swiger & Janine Guglielmino in front of the poster at the San Antonio Breast Cancer Symposium 2014.

By Chris Wilson, Triple Negative Breast Cancer Foundation Trustee

Kathleen Swiger stands by her poster in the “Psychosocial and Behavioral” section of the vast hall at the San Antonio Breast Cancer Symposium, the second of two that Living Beyond Breast Cancer (LBBC) presented at this important meeting. There’s a lot interest from the attendees, both advocates and medical professionals. They study the data and ask Swiger questions about the results.

“The posters are just the tip of the iceberg,” she says, pointing to the panels behind her. “There is so much more data in the full survey.”

The LBBC study is the first survey of psychosocial, nonmedical, needs of women with triple-negative breast cancer. It provides clear and compelling evidence that women with this subtype of the disease have higher levels of fear, anxiety and worry than women with other subtypes of breast cancer. In addition, these concerns continue throughout their treatment and beyond. Continue reading

What to Get for Women Who Have Cancer: A Gift Giving Guide

Jenny Burkholder 2013With the holidays quickly approaching, LBBC Breast Cancer Helpline volunteer, Jenny Burkholder, shares her tips on gift giving for someone you love who has breast cancer. 

Last week, a colleague approached me to talk about her sister-in-law, who is about to have a lumpectomy and radiation. I assumed she wanted to talk about cancer. I was more than happy to lend my insights, but what I realized was that what she was asking me was: what can I get for a woman who has cancer? I asked her to clarify, and what she was actually asking me was: what can I buy for her so she can feel better about this whole ugly situation? And maybe she was also saying was: what can I buy for her, so I can feel better about this whole ugly situation? Either way, I’m all for gift giving; everyone benefits.

I have to admit, one of the unexpected by-products of having cancer was that I received a number of thoughtful and inspired gifts. When I say gifts, what I mean is I received many tangible items, from writing journals to pillow cases, to already read and loved books, to comfortable pajamas and organic skincare products. I also received many intangible things, like support and love, guidance and friendship. I was more than happy to receive these things because they did make me feel better, and now when I meet a woman who has been diagnosed, I send her a gift. I have given headscarves and writing journals, big hoop earrings and organic skincare products. I have also given phone calls and hugs.

So in thinking about my gift giving, I have devised a list of both tangible and intangible gifts that one can give and ask for this season and beyond. Continue reading

Living with Breast Cancer: Access the Health Insurance You Deserve

Anne-FilipicThe open enrollment period for the Health Insurance Marketplace began last month and goes until February 15, 2015. In this guest post, Anne Filipic, President of Enroll America, blogs about the changes in health insurance in the last few years and how they impact women affected by breast cancer. 

 

Until recently, pre-existing conditions have kept many women from getting the health insurance necessary to diagnose and treat their illness. So, at a time when they needed health insurance to help save their lives, many were left facing the full cost of hefty medical bills on their own. With hundreds of thousands of dollars in doctor visits, tests, medication, and more, it’s a cost that many couldn’t afford.

As a cancer survivor, you may have been turned down or charged more for health insurance in the past. But now, that is no longer an issue. Having a pre-existing condition can no longer prevent you from getting quality, affordable coverage. And you can’t be charged more for health insurance because of your medical history. This is true even if you’ve previously been turned down or charged more for coverage due to a pre-existing condition.

Now, hundreds of thousands of women who are fighting breast cancer have access to the life-saving medical care they need. In addition, preventive care for key services is now free, such as breast cancer genetic test counseling (BRCA) for women at higher risk for breast cancer, mammograms every one to two years for women over age 40, and breast cancer chemoprevention counseling for women at higher risk.  Continue reading

My Caregiver, My Friend, My Sister

November is National Family Caregivers Month, and we’re marking it with a special blog post by Lynn Folkman, our community engagement manager. Lynn writes about her sister, Deb, who offered tremendous love and support to Lynn throughout her experience with breast cancer.

Deb and LynnMy sister and I were standing near the finish line for the Philadelphia Marathon this past weekend. We were eagerly waiting to catch a glimpse of my nephew and his fiancé so we could cheer and support them as they ran. While waiting to see them pass by, I enthusiastically cheered and clapped for all those running the marathon. I was overwhelmed at the number of all of those present showing support to those they love. With my sister by my side, I thought that she should be cheered for in the same manner as my caregiver.

Let me start by saying, I love my sister Deb. She is quite reserved and is one who does not like being in the spotlight. She has one of the biggest hearts and is one of the most giving and caring individuals I know. I have thanked her many times in a variety of ways to acknowledge her support during my breast cancer diagnosis and treatment; yet, I don’t think she fully understands the enormous positive impact that her caregiving had on my healing.

My sister and I were always close. During the time we shared as co-caregivers for my mom, who had laryngeal cancer, our bond became that much stronger.  Two months after my mother passed away, I had my annual mammogram. Two weeks after the results of my normal mammogram, I had a pain underneath my arm. Although my sister is no longer a practicing nurse, I asked her opinion. She encouraged me to go to the doctor for more information. The initial doctors visit led me first to an x-ray and then to an ultrasound, which was suspicious, and then on to a needle/core biopsy. My sister insisted on coming with me to the biopsy, and so her journey of being my caregiver began. I waited a few weeks for the biopsy results, but quite honestly after I heard the doctor say that 90 percent of these are benign, the thought of cancer left my mind. I was about to leave for a business trip for Miami when I received the call at work about my breast cancer diagnosis. Stunned and shocked, I hung up the phone and immediately called my sister. Her husband answered the phone and I managed to utter Deb’s name. He could tell that I was upset and my sister quickly picked up the phone. I was desperately trying to breathe, I gasped to find my voice to utter actual words, but ultimately found myself unable to speak. However, no words were required, the silence mixed with sobbing said it all – she understood, I had breast cancer. Continue reading

Be Thankful: Jane-Ellen Miller’s Poem

???????????????????????????????Just in time for Thanksgiving, a poem from Jane-Ellen Miller, who attended our fall writing series, “Writing the Journey.”

In my secret mind, I tell myself life is good.

I woke up this morning,

My car started

I worked out.

I tell myself life is good.

 

I worked from home today,

Stopped by my favorite deli for lunch,

Enjoyed the sunshine,

And I tell myself

Life is good.

 

My son stopped by

just to check on me

Life is good.

Almost didn’t think about cancer today –

Life is still good!

 

Jane-Ellen Miller

November 2014

 

Ms. Jane-Ellen Miller brings over 35 years of diversified experience in higher education and information technology. Jane-Ellen graduated from Cleveland State University, with a degree in English.  Her passion for writing was instilled at a very young age by her Dad, who also enjoyed expressing his views by writing.

Giving Tuesday 2014

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We have a day for giving thanks. We have two for shopping. Now, we have #GivingTuesday, a global day dedicated to giving back! Giving Tuesday is a day for charities, families, businesses, community centers and students around the world to come together for one common purpose: to celebrate generosity and to give back. LBBC is excited to announce that we will be a part of Giving Tuesday 2014 on Tuesday, December 2, 2014 and as a participating charity, we’re asking that you help us by spreading the word about Living Beyond Breast Cancer by being a part of our #LBBCUnselfie campaign.

 

Simply share a picture of yourself on your Facebook, Twitter or Instagram account holding a sign that reads “I am #LBBCUnselfie” and caption the image with why or how you support Living Beyond Breast Cancer. Your support can be anything from why you participate in LBBC’s programs and services to why you donate or volunteer at events, or it can be in honor of someone you know who has breast cancer and uses LBBC’s services. It’s completely up to you! Just make sure you use #LBBCUnselfie in your caption so we can re-tweet, re-gram and add your Facebook photo to the #LBBCUnselfie photo album on our Facebook page. We can’t wait to see the #LBBCUnSelfie images on Giving Tuesday – but posting your photos today so you can be featured first on Giving Tuesday!

 
Here are some example of #LBBCUnSelfie posts:

 

LBBCUnselfie2 LBBCUnselfie1

 

Help us spread the word and hopefully everyone can learn about Living Beyond Breast Cancer and share why they too are #LBBCUnselfie!

Who Was This Woman Looking At Me? Was She Even A Woman?

Tough Girl 2!Tiffany Mannino is back to share yet another of her diary entries penned to her unborn daughter Lola during her breast cancer journey. She has entitled the letters Beautifully Broken: Letters From a Girl/Woman/Human in Progress’ as 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.

Oh baby…I am so tired the computer screen is looking fuzzy, however, a few moments ago, I had this compulsion to write to you rather than crawl into bed. After nine months of being on sabbatical, I have finally gone back to work to start a new school year. I wish I could tell you the transition was easy, but the last few weeks have been grueling. I have been an emotional wreck having meltdowns on a daily basis. The best way that I can describe my state is that I feel like a beached horseshoe crab that has been flipped on its back and can’t seem to turn over. It squirms with the scorching sun beating down on its parched shell. The strangest part of this all is that as difficult as this change is for me, deep in my heart I know that I am going to come out of this a better soul. Like a molting horseshoe crab, I feel like I am shedding my old self and beginning a new. Continue reading