Our New Vision and Mission

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

Fearless Love or Brave and Crazy

PhotoLong time LBBC blog contributor, Randi Rentz, shares her take on the latest news surrounding Angelina Jolie’s decision to have a double mastectomy after testing positive for the BRCA gene. 

***

We all know that Angelina Jolie’s double mastectomy has put genetic testing in the spotlight. In fact, no one will ever do for women diagnosed with the BRCA gene what Angelina Jolie did by openly talking about her decision to have a double mastectomy. And the decision to lose both breasts is not an easy one.

 

The question is; if you were Angelina Jolie would you have made this decision and made it this public? In truth she had no reason to discuss this procedure and could have kept it to herself never alerting anyone to the surgical changes to her body. For her the toughest decision might not have been deciding on the surgery, but choosing to share the information since her fame and fortune depend on her physical properties. After all, she is no doubt one of the most famous women in the world if not the most beautiful.

 

Did she make her decision because she was brave or was it out of fear? Well, if you ask Melissa Etheridge, a breast cancer survivor and rockin’ singer, she would probably say it was out of fear. Say what?! Whoa. Those are fightin’ words. I don’t think Brad Pitt is very happy about that.

 

I guess when you mess with Angelina; you mess with Brad, too. While I don’t know why anyone would ever want to mess with Brad Pitt outside the bedroom, apparently Melissa Etheridge is taking on the celeb couple.

 

Melissa Etheridge believes that cancer comes from inside you and so much of it has to do with the environment of your body. She feels it’s the stress that will turn that gene on or not. Ok, so that’s Melissa’s belief.

 

Hmmm. I get what Melissa is saying, and she is certainly entitled to her own opinion, but I have to say, I applaud Angelina’s decision and discussion.

 

No one ever wants to go under the knife.  At the end of the day, people make different choices and go down different paths, and the one that Angelina chose is different from Melissa’s. I’m sorry, Meliss, but I don’t think that warrants criticism over one decision or the other.

 

I am sorry that Melissa went through breast cancer, and I’m sorry that Angelina had to deal with this horrific disease as well, but to Angelina Jolie I say thank you! My guess is that women all over America who know they carry the BRCA gene or suspect they should get tested are reviewing their options or bringing this issue out to reexamine it-all because Angelina Jolie is talking about it. I have not been a big fan of Angelina, but I’m pretty impressed with her now.

 

Do you see where Melissa Etheridge is coming from? Do you think she was out of line to criticize Angelina’s decision?

 

Randi Rentz, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington, DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

A Different Type of Survivor

Patricia Brett Patricia Brett, designer and founder of Veronica Brett, a luxury line of swimwear made specifically for women with breast cancer and those who have had risk-reducing mastectomies, will be blogging throughout the summer for LBBC  about her history with breast cancer and giving tips on how to enjoy the warmer months and feel sexy on the beach. Here, as an introduction, she shares her story about testing positive for the BRCA1 gene in conjunction with a significant family history of breast cancer.

I’m not a breast cancer survivor. I’ve never had breast cancer and I hope and pray I never hear the words “You have cancer”.

Yet for someone who has never been diagnosed with breast cancer I certainly have some pretty significant scars across the middle of my chest. Why? I’m a “previvor”.

Like Angelina Jolie and so many courageous, yet unknown women before her, I elected to remove my breasts to save my life.

At the time of my risk-reducing bilateral mastectomy back in January 2003 (has it really been 10 years?) people thought I was nuts. They didn’t understand why a woman with “healthy breasts” would ever have them removed. Healthy is a relative term.

When I was a kid growing up, I lost three aunts to breast cancer. I always thought it was some type of pollution in the water or the land back in Ohio where my father and his family were raised. By the time I was 18 he had lost three of his six sisters to breast cancer.

It turns out it wasn’t the water but the genes that contributed to their cancers. As Angelina referred to them in her NY Times Op Ed piece when she became public about her surgery, “faulty genes”. For me the faulty gene has a name: BRCA1, and the mutation has a number: Q1200X.

Like survivors who know the specifics of their diagnosis (stage 1, ER+, HER2-) I know my number, Q1200X. It’s that specific mutation on that particular gene that gave me an 85% chance of getting breast cancer and a 55% risk of ovarian cancer.

But it wasn’t the gene alone. What also contributed to my risk was family history. Not only did I loose three aunts to breast cancer, my sister and many first cousins have been diagnosed with breast cancer. In total honesty I have now lost count, but the actual number is something greater than six. One cousin has also been diagnosed with ovarian cancer. Fortunately for us, all have survived.

So yes, the breast went in 2003, the ovaries back in 2007 (a significantly harder surgery than I ever imagined, story to be told at another time).

And now, I call myself a “previvor”, a person who has survived the increased risk of inherited breast or ovarian cancer, a term coined by FORCE, Facing Our Risk of Cancer Empowered, a group dedicated to providing information to women at risk of these cancers.

I’ve never called myself a “survivor”. I don’t know what it means to hear those words or to face that diagnosis. Yet so many women I have met over the years say I am a survivor. When I attended my first “young survivor” conference (now known as C4YW) in Jacksonville in 2008, they told me I was a survivor. “You’ve had four surgeries in two years and a double mastectomy, of course you’re a survivor!” I was told by one amazing young woman sporting her multi colored leis indicating her status as a five-year breast cancer survivor.

I can’t possibly imagine what it is like to learn you have cancer and I believe I have done everything I can to make certain I never hear the words “you have cancer” (full disclosure- I could still cut out the red meat and get more exercise!)

But I will never call myself a survivor. Out of respect to all the women and men who wear that mantle, I will always stay the simple “previvor”.

You’ll hear from me from time to time as I have been invited to blog for LBBC.

I’ll be sharing my story, along with fashion tips on surviving beautifully including some posts dedicated to swimwear for survivors. If you have questions for me or suggestions for blogs, I can be reached at: pbrett@veronicabrett.com

Stay healthy and sexy-

Patricia

Patricia Brett is the Founder & Designer of Veronica Brett, the first luxury collection of swimwear created especially for breast cancer survivors. After loosing three aunts to breast cancer, watching her sister battle the disease, and having her own bilateral mastectomy, Patricia created Veronica Brett to empower women to look and feel their best again.  Patricia has been profiled in O, The Oprah Magazine, Harper’s BAZAAR, CNNMoney.com, ABC evening news, as well as numerous fashion publications. She has a Master of Architecture from Yale University and resides in Manhattan with her husband and son.

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

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.

LBBC’s Triple-Negative Breast Cancer Focus Groups Need Participants!

TN Focus Group Header

Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

“Hit it hard and hit it fast.”

crop3

Last week, we introduced you to LBBC’s newest blogger, Laura Renegar, who was diagnosed with triple-negative breast cancer in 2011.  When we left off, Laura had asked her surgeon if the results he had just delivered did indeed mean she had TNBC.  Trying to be as compassionate as possible he stated, “Yes darlin’, it does.”   

Always the southern gentlemen even as I was being told I have been diagnosed with triple-negative breast cancer.  Here I was, thrown back down to the lowest point of the roller coaster ride yet. By this point, I had done enough research to know that I should be frightened. The research that I had seen showed the statistics and the prognosis of TNBC are not as positive as some other types of breast cancer, that there is not any targeted therapy for TNBC and that is usually very aggressive. Now I understood why my surgeon wanted my tumor out a few weeks prior. I understood why he didn’t want to waste another week waiting for the insurance company to decide the fate of my diagnosis while debating coverage for a blood test.  All things became clear. I had to become my own advocate and I had to seek every bit of information I could find and I had to do my research.  I didn’t know anyone that had triple-negative breast cancer, in fact, I had barely heard of it.

I had a port placed in my chest a few days later and in a few weeks, I began chemotherapy. Three days before chemotherapy I met my first survivor friend who had TNBC. She was coming up on her five year mark and I was impressed. She looked good and she was healthy. I became focused on just getting through chemotherapy because my oncologist said we were going to “hit it hard and hit it fast”, and we did.

I put my BRCA test results out of my mind and I gave 100% attention to staying well through chemotherapy. A month after my last chemotherapy treatment was my 48th birthday and it was time for me to make my decision for further treatment. Because of the fact that my cancer was triple-negative and the fact that I have the BRCA2 gene mutation, my decisions seemed pretty clearly defined. My oncologist seemed to think so, my surgeon seemed to think so, but yet, I had to make the final decision, and live with that decision, whichever path I chose.

I didn’t have to have a bilateral mastectomy. I didn’t have to have my ovaries removed. But if I didn’t have those surgeries, would that encourage a recurrence?  I clearly remember lying in my bed on my birthday and thinking “in order to have more birthdays, I have to do everything in my power to protect myself”.  I remember weighing my options. Even though my cancer was not in my lymph nodes, and I had chemotherapy, the fact that I was BRCA2 positive remained. My chance of a recurrence was extremely high; and the prognosis of recurrent triple negative breast cancer is poor. I had to do everything I could to secure my future and my life. I began researching bilateral mastectomies and what it meant to have my ovaries removed and what it would be like to be put in medical menopause at 47 years old. This option did not seem to be an easy path, but it did seem like the safest treatment path, to secure a future for myself.

The bilateral surgery, along with the oophorectomy (Ed. Note: the surgical removal of an ovary), was a hard surgery for me.  It was hard physically and emotionally, and my roller coaster ride continued through reconstruction while learning to live with menopausal symptoms and my new body.

March 1, 2013 was the date of my two-year survivor anniversary. I look back now and am so proud of the path I took and the decisions I made to ensure my health. I did everything I could possibly do to beat my triple-negative breast cancer diagnosis and reduce the chances of a recurrence.

Would I do the same thing over again? Yes I would!

My story is still unfolding but I live each day the best way I can. I volunteer a lot for the American Cancer Society, I continue to update my blog, I write stories and articles when I am asked to, and I tell my story when I am invited to speak about it. Mainly, I try to encourage women to be their own advocate, to get their annual mammograms, to have their yearly physical, and to do self exams. I encourage them to know their breasts and to know their health history.

I will continue to try and shine a light on TNBC until a targeted therapy is found. I now know 19 women with triple-negative breast cancer. Two years ago I was not fortunate enough to know, and love, these women but I consider this one of the many blessings of this diagnosis. If you are diagnosed with TNBC, please reach out to people in your community and to find other TNBC survivors. How? Ask your doctors to introduce you to some of them.  See if there is a local support group for TNBC.  You can also call the Triple Negative Breast Cancer Foundation and contact the American Cancer Society and ask for a TNBC volunteer with Reach to Recovery.

I also encourage you to seek out the many services available at LBBC for women with TNBC including their Guide to Understanding Triple Negative Breast Cancer, expanded sections of content on their award winning website and their upcoming free webinar featuring Dr. Eric P. Winer.

Take advantage of these resources and find other women – because they may need to have you in their life just as you will want them to be in yours.

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

“Yes darlin’, – it does.”

crop3
                                       

If we followed format, this is where we’d introduce you to LBBC’s newest blogger, Laura Renegar, with a few polite lines that could never  do justice to this amazingly talented and funny lady.  We’re still laughing over this offering of honesty:

When I had expanders in my chest they kind of formed a shelf below my collar bone. When I was sick and in bed and would eat propped up, I would CONSTANTLY have toast crumbs or Oreo crumbs on that “shelf” on my chest. Once I found a whole chocolate chip sitting there and once I found a piece of turkey. There are funny moments during expansion and reconstruction. 

Here is the first of a planned series of blogs where Laura will share her experiences as a woman diagnosed with triple-negative breast cancer.

On March 1, 2011, I received the call that every woman dreads. I was at work, sitting at my desk, holding my cell phone that showed the name of my OB/GYN calling. My mind debated about not answering the phone, but quickly considered the possibility that this phone call could be good news. When I answered that call, my life, and the life of my family and friends would be forever changed. “You have breast cancer” my doctor said, “I am sorry.” We talked for a few minutes as I sat numbly at my desk writing the name and number of the surgeon he suggested on a small piece of scrap paper.

A few days later my husband and I met my surgeon and his nurse. Right in the beginning of the appointment the doctor said “can I joke with you?” Are you kidding me? This was my kind of doctor! Not only did I want him to be able to joke with me, I needed him to be able to joke with me. No matter how serious breast cancer can be, I needed my medical team to be brutally honest, caring, and compassionate yet able to lighten some of the moments with a joke or some laughter.

My surgeon recommended genetic testing and I agreed to see a genetic counselor for my BRCA test. I had the blood test and genetic counseling and the waiting began. One week became two weeks. My insurance company was negotiating with the genetic testing company about my coverage for this $3,400 blood test. Two weeks! My surgeon scheduled my lumpectomy and sentinel node biopsy because he couldn’t allow my cancer to continue to grow and spread while waiting for the insurance company to make a decision. At this point I began to realize that my cancer was most likely aggressive. I was told that my cancer would be staged, and further diagnosed, when the tumor was removed during the lumpectomy. I felt lost and left somewhat in the dark. Every day seemed as if we were hurrying up for a test or an appointment and then we were waiting. I felt like we were always waiting for a call, an answer, or a test result. I felt immediate relief the night of the lumpectomy and sentinel node biopsy surgery, knowing that my cancer had been removed. I was very happy to have the surgery behind me, but little did I know that my real roller coaster ride was just beginning.

Two days after my surgery I got a phone call from the genetics counselor. Once again, a phone call that I was hoping was going to deliver good news – but I heard hard news instead. The phone call began with “I am sorry to tell you this, two days after your surgery, but your BRCA test came back positive yesterday.” What? The BRCA2 gene mutation put a whole different spin on my diagnosis. Now I felt as if I was at the bottom of the roller coaster loop and I began researching. My odds of getting breast cancer were obviously 100% (since I already had it) and the test showed my odds of getting ovarian cancer were over 50%. But what does this test say, and prove, about my chance of recurrence? I was recuperating from the surgery yet my mind and heart were nagged by this BRCA test result and worrying already about a recurrence. Five more days passed and we still had not gotten news on my pathology report from my lumpectomy. No news is good news right? Eight days after my lumpectomy, I was at work, and my phone rang; it was my surgeon’s nurse. No news was good news! My lymph nodes were negative for cancer and he was able to get clear margins. I am ecstatic, we are all celebrating and dancing around, and now I feel like I am on one of the upper tracks of my roller coaster ride.

Clear margins AND clean lymph nodes? How blessed am I? I am on the top of the world!

The next day I receive another phone call, this time it is with the result of my her2 neu test. I was still riding high on the lack of cancerous activity in my lymph nodes and the fact that he was able to get clear margins. My surgeon stated that my her2 neu test came back negative. I got very quiet and said to my surgeon, “this means I am triple negative, doesn’t it?”

He paused on the other end of the phone and said “Yes darlin’, – it does.”

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine. During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blogtoo!