Get [family-centered] with us.

Denise Portner is a breast cancer survivor, a two-term board member of Living Beyond Breast Cancer, and senior vice president at SteegeThomson Communications in Philadelphia. In this contribution to Living Beyond Breast Cancer’s 25th Anniversary Blog Series, Denise describes the feelings the number 25 engenders for parents of daughters who have genetic mutations in the family.

Living Beyond Breast Cancer is celebrating its 25th Anniversary in 2016 and as a board member, I couldn’t be prouder of the organization. Still, I must confess that amidst the planning, the number 25 has been weighing on my mind and generating a whirlwind of emotions.

You see, our daughter turned 25 in June, precisely the age doctors recommend that she be tested for the BRCA2 mutation that my mother, my aunt and I carry, the one that led all three of us to have breast cancer.

First diagnosed at age 60, my mother developed metastatic breast cancer at 75 and today, nearly three years later, she is managing fairly well on a series of medications. But the disease has taken a toll on her health, and some days, on her spirit.  Her sister, seven years her junior, also received a diagnosis at age 60, and thankfully, following treatment and surgery, is doing well a decade later.

As for me, I was diagnosed in June 2009 at age 46, just before my daughter’s high school graduation. After my mother’s recurrence and my aunt’s diagnosis, we underwent genetic testing and learned that we all carry the BRCA2 gene mutation, which put us at an increased risk of breast and ovarian cancer (and which will increase our son’s risk for prostate cancer if he carries the mutation. His testing is recommended at age 30).

Denise 1I’ve had the full tour — surgery, chemotherapy, radiation, reconstruction, and now hormonal therapy to prevent recurrence. Through it all, LBBC has been a resource, answering questions, connecting me with experts for second opinions, anticipating my concerns in webinars, guides and newsletters. They trained me to be a Helpline volunteer so I could use my experience to support women like the one who called from Alabama and told me I was her first-ever contact with a survivor. At the annual fall conference, a presentation on intimacy and sexuality made it so I didn’t have to ask. If I could wave a magic wand (or get a massive grant), everyone diagnosed with breast cancer would receive LBBC’s Guide for the Newly Diagnosed before leaving the oncologist’s office.

Every May for the past five years, I’ve helped organize a yoga team for the Reach & Raise fundraiser.  On a peaceful Sunday morning, I am able to look out on the steps of the Philadelphia Museum of Art and beyond, where I see thousands of people gathered to acknowledge where they are in the breast cancer experience, to be there for each other, and to revel in a community who understands. The best poses are the ones in when we link arms and discover there are moves we can do together that we’d never achieve solo.

Denise 2

The Forever 25 Team at Reach & Raise: Yoga for a Reason, May 2016

The secret of LBBC’s success is not only what it has provided to women and their families in need, but what it has allowed us to give to others. When you have gotten through a treatment milestone or are consumed with worry about your future, it’s therapeutic to be able to get outside yourself by helping someone else, whether by making a call, writing a blog, or raising funds.

This summer, 25 years after the founding of LBBC, our daughter is living in Manhattan, getting used to a new job and a new apartment. She’s dating, and trying to figure out her direction in life.  It’s not a great time for her to think about, and maybe face, a risk for breast cancer.  But she’s a tough one, and is willing to figure it out and do what needs to be done. She has seen her mother, grandmother and aunt go through testing and treatment. Thanks to LBBC, she knows there are women of all ages with whom she can connect, no matter the outcome.

So as we mark LBBC’s 25th Anniversary, I’m overcome with gratitude for my health, concern for my mother’s future and angst over my daughter’s forthcoming testing. The age of personalized medicine is most definitely not for the faint of heart.

One thing I learned during treatment, however, is that you can manage almost anything if you feel you’re not alone.  And as long as LBBC is around, no one affected by breast cancer — whether in our home base of Philadelphia or in the rural counties of Alabama– is alone.  In person, on the phone or online, someone is there with knowledge and compassion.

At 25, that surely is something to celebrate.

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Denise, her mother and daughter.

 


25th Anniversary Mark

Interested in telling your story as part of our 25th Anniversary Blog Series?  Contact Kevin Gianotto at kevin@lbbc.org.

TNBC Aware: Understanding the Worry of TNBC During, After Treatment

For our TNBC Aware series, Helpline volunteer and LBBC blogger Ronda Walker Weaver discusses her experience coping with and understanding a TNBC diagnosis.

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I have been a volunteer for LBBC’s Breast Cancer Helpline for about 18 months.

Interestingly, I often receive calls from women who have triple-negative breast cancer. Typically they are scared – lots of negative stories about TNBC, and they wonder what is ahead of them as far as treatment and survival.

Triple-negative breast cancer can seem like a life-sentence to many women. The triple-negative means our cancer is not responsive to “typical” breast cancer treatments that target other subtypes.(Although, really, what is typical? – all women should have individualized treatment plans.) The biggest, most generic difference is that other breast cancers are hormone- or HER2-positive. So in addition to treatment like surgery, radiation and chemo, women with these types of breast cancer receive some type of therapy that targets the hormone or protein growth (this may be taken daily for 5-10 years). TNBC is not hormone or protein responsive, so we usually have some combination of surgery, radiation and chemo, regardless of the size of our tumor, and that is it – we have one chance at killing our aggressive cancer rather than a prolonged chance. Typically if TNBC doesn’t not reoccur in 2-5 years, we’re considered NED (no evidence of disease), but those first 5 years are filled with careful monitoring/screening and fear. Continue reading

Our New Vision and Mission

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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. 

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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!

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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!