Archive for the ‘metastatic breast cancer’ Category

The Search for Common Ground In Advocacy

February 13, 2014

The U.K.-based Pancreatic Cancer Action launched a controversial public service announcement that got the attention of the media and cancer advocates worldwide. LBBC’s Janine E. Guglielmino, MA, director, publications and strategic initiatives, writes about the campaign, and the importance of finding commonality in the cancer advocacy community.

Many of you have already seen the controversial public service announcement “I Wish I Had …” from the U.K.-based Pancreatic Cancer Action. The video PSA opens with a man and a woman, newly diagnosed with pancreatic cancer, wishing they had been diagnosed with testicular or breast cancer instead. Next, scrolling text shows the 5-year overall survival rate for pancreatic cancer, which in the U.S. ranges from 14 percent in stage I to 1 percent in stage IV.

The ad is powerful, but it is also wrongheaded and insensitive. It paints breast cancer as a single disease, and reinforces the pervasive and incorrect belief that breast cancer survival outcomes are universally high. It minimizes the physical and emotional trauma breast and testicular cancers leave in their wake. And it dismisses the tragedy of the approximately 530,000 people worldwide who die each year from these two diseases. (more…)

Listening to the Voices of Those With Metastatic Breast Cancer

January 17, 2014

Catherine-Ormerod 1This week, articles published in the New York Times and The Guardian criticized blogger Lisa Boncheck Adams’ decisions to publicly write and tweet about her experiences with metastatic breast cancer.  Catherine Ormerod, Living Beyond Breast Cancer’s vice president, programs and partnerships, weighs in on this issue. 

This past Sunday former New York Times executive editor Bill Keller wrote an op-ed posing questions about Lisa Boncheck Adams’ public blog about her experiences with metastatic breast cancer. In particular, he questioned the choices she has made as a young wife and mother to extend her life as long as possible through, what Keller termed, “heroic measures”: taking treatments until they stop working and moving on to the next treatment. The treatment that Adams’ has pursued is, in fact, the standard way of treating metastatic disease. (more…)

Giving Back to LBBC: Amy Lessack’s Story

November 27, 2013

The Tuesday after Thanksgiving will be the second annual #GivingTuesday, a national online initiative and day of giving back to charities, nonprofit organizations and important causes. Amy Lessack wrote this blog post on why she’s giving back to LBBC and why you should, too.

I recently learned about a national online initiative called #GivingTuesday and thought it was such a cool idea. The objective of the day is to have everyone everywhere donate or host charitable activities to benefit an organization of their choice the Tuesday after Thanksgiving.  Well, for me, the answer is easy:  Yes, of course I will “Give on Tuesday” and…my organization of choice is Living Beyond Breast Cancer (LBBC)!

LBBC does amazing things for women who are diagnosed with breast cancer and really for anyone who is impacted by the disease, including family members, friends, caregivers or healthcare providers. What makes LBBC a unique organization to gravitate to is the personal touch given by the staff and the services they offer.  LBBC offers webinars, community meetings and face-to-face conferences, as well as the Breast Cancer Helpline, which is staffed by survivors who lovingly answer calls and help where they can by just listening, offering support and resources – instead of just relying on “Dr. Google.”   (more…)

Breast Cancer Six-Word Memoirs for BCAM 2013 – Week of Oct. 13

October 23, 2013

You’ve submitted them, and we’ve posted them – here’s week three of LBBC’s breast cancer six-word memoirs! Inspired by Smith Magazine’s project, the Six-Word Memoir, we’ve started a campaign to highlight your experience with breast cancer using the six words that best describe your journey (or an aspect of it). This campaign is ongoing throughout Breast Cancer Awareness Month.

Marsha Wheatley's Six-Word Memoir for Oct. 17, 2013.

Marsha Wheatley’s Six-Word Memoir for Oct. 17, 2013.

We are now in week three of our month-long BCAM breast cancer six-word memoir campaign. We thank everyone who has contributed to this project so far — your stories continue to move and inspire us!

(more…)

Introducing My+Story

October 10, 2013

Kevin Gianotto is the associate director of marketing, public relations and corporate partnerships at Living Beyond Breast Cancer.  He’s worked for nonprofit organizations since 2002.

Two weeks ago, I attended a reception at the Dover International Speedway where I had the chance to introduce a number of individuals I met to the work we do at LBBC to connect people to trusted breast cancer information and a community of support.  The conversations I had that evening inevitably led to the opportunity for me to discuss what I am most passionate about here at LBBC –women who have been diagnosed with metastatic breast cancer, many of whom have become close friends, and the educational resources and support services LBBC has available for them.

52792_10151113120997285_1062790530_oMetastatic breast cancer—a form of advanced breast cancer also referred to as stage IV breast cancer—occurs when breast cancer has spread to other parts of the body.  Approximately 159,000 women in the United States are currently living with metastatic breast cancer, and this number is projected to increase to approximately 164,000 by the year 2015.

To raise awareness of Metastatic Breast Cancer Awareness Day on October 13, LBBC has partnered with the MedImmune Specialty Care Division of AstraZeneca to promote the launch of My+Story, an online resource center which highlights the needs of women living with metastatic breast cancer and calls attention to metastatic disease as a key component of October’s National Breast Cancer Awareness Month. Metastatic Breast Cancer Awareness Day was officially recognized by the U.S. Congress in 2009, following a grassroots awareness effort led by members of the Metastatic Breast Cancer Network (MBCN).

The My+Story site houses tools and information tailored for women living with advanced disease. The website is designed to connect patients with the information they need, and links to patient support groups that have specific programs for metastatic breast cancer patients—like LBBC and MBCN.

Visitors can learn about metastatic breast cancer and treatment options, find tips on how to take care of their bodies, and celebrate their life experiences by creating a hard copy photobook of personal stories that may be shared with loved ones. Women with metastatic breast cancer and those who are directly inspired by them can also create a personalized flower badge that can be shared at MyMBCStory.com and with their personal social media community to help raise awareness. In addition, supporters of women with metastatic breast cancer can visit MyMBCStory.com/awareness to download free educational materials and inspire members of their community to help raise awareness of the disease.

Other great interactive features (ones my social media team here at LBBC love) allow visitors to share their favorite images and information from the site with others via Facebook, Twitter and Pinterest. And, throughout the month, AstraZeneca will make a contribution to LBBC and MBCN each time visitors share content (up to a total of $28,000) in acknowledgment of the 28 years since National Breast Cancer Awareness Month was established and of the ongoing effort to bring metastatic breast cancer to the forefront. If you’re inclined, be sure to check out the site and let us know what you think.

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

Reset

May 9, 2013

???????????????????????????????LBBC would like to introduce Lucille Kasprack, a woman living with metastatic breast cancer who hasn’t allowed it to get in the way of fulfilling one of her most important dreams of being a professional artist! Here she shares her inspirational story about how she turned her diagnosis into a positive experience that ultimately changed her life in more ways than one…

Wow! If someone had told me 10 years ago that in May 2013 I would be exhibiting my artwork in a gallery in New York City I would have thought they were dreaming or a little bit crazy. But that is exactly what has happened to me after a long struggle with breast cancer. My journey started in 2003 with a diagnosis of Stage 1 breast cancer and we all know how frightening it is to receive that news. I decided I was going to tackle this head on; with my husband being my support, my art becoming my refuge, and God becoming my strength. Once surgery and radiation was over, little by little I felt like my old self again except for one difference. My approach to life was changed completely; nothing would be taken for granted ever again. Now my husband and family and my art became much more important to me. I set new goals for myself: appreciate and see my family more; and work hard at my art to become a better painter. And for the next 5 years that is what I did. We had more family get togethers and I took a lot of art classes and workshops and worked daily on my paintings.

In 2008, at my 5 year breast cancer check-up, an MRI and CT scan showed a spot under my left arm and 2 in my chest. A biopsy confirmed Stage 4 metastatic cancer. I now had to face the fact I will never be free of this cancer and I will have to reset new goals for myself. Those goals were to have more fun times with friends and family, and to not just work at painting but to work to become a professional artist, and to place my life in God’s hands. I started entering my paintings in juried art shows and exhibits and to my surprise they were not only accepted but also won prizes.

In 2011, I had to have thoracic surgery because the cancer had spread to my pleura. However, after chemo treatments and subsequent hospitalizations, my last PET scans have remained stable.

Then came 2012 and that “Wow” happened.  In the Spring I was contacted by the Agora Gallery in NYC stating that they saw my work on my website and were very impressed and requested that I submit a portfolio of my work for their review. At first, I didn’t believe it and then in time I realized what a great opportunity this was and I sent in my portfolio. A few weeks later I was informed that they would like to include my work in a future exhibit. I definitely said yes!  It turned out to be a lot of work but the end result is that my work will be on display in NYC from May 11 -31 with an artist’s reception on May 16, 2013. What an amazing journey! Never give up! I reached my goal and I am now a professional artist. I also received additional blessings. My fourth grandchild, Ashley, was born on November 13, 2012 and I continue to have stable PET scans!

Lucille is a 10 year breast cancer survivor and lives in New Jersey with her husband. She has 2 children and 4 grandchildren. Her husband is a retired school administrator and she is a retired  teacher but she continues to work daily on painting and drawing. She loves to experiment with different materials to keep it new and interesting. You can view her artwork on her website at http://lucillesartgallery.sharepoint.com!

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.

What, Me…Cancer??

April 11, 2013

On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.

SandyDennis

On that day of the LBBC Yoga on the Steps Fundraiser in DC,  my sneaky triple negative breast cancer in fact was not gone, only as yet undetected.  And that 95% chance of non-recurrence? Well, somebody has to be in that 5%.  So much for my faith in statistics.   In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . .  .”  Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes.  In the world of Stage IV disease, I am very very early . .   . my cancer is virtually in its infancy. And I have every intention of keeping it there.  I am stunting your growth, you little b . .  .d!!

Wrong assumption # 5: stage IV is a death sentence.  I did not know that stage IV could be livable.  I truly thought that—except in rare instances—stage IV patients were down for the count.  I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)

I have just completed five rounds of chemotherapy, and am nearing the end of treatment.  The chemo was actually less fatiguing and I experienced fewer side effects this time.   I kept my hair, which shallow but true, makes me feel good about myself.  And I really, really don’t look sick at all, unless one notices my port.  I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago.  It’s always something.  But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%.  These numbers I can handle.  Hallelujah!  Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this.  Cancer, you’re going down.

Granted, I don’t always feel or act so tough.  Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime.  My lifelong goal will be to keep him away from the good body parts.

In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes.  Albeit, I will do all of these things as a cancer patient.  It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.

You can continue to follow Sandi’s story by visiting her own blog, Cancer Diva 4 Ever and be sure to visit the LBBC blog for future posts by Sandi!

As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct 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.

What, Me . . . .Cancer??

April 9, 2013

Today, we welcome first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu.  

 

SandyDennis

I know far more about breast cancer than I ever thought I would.  In almost three years, I have gone from knowing a bit more than the average bear (as a healthcare lawyer I have worked with biopharmaceutical companies on treatment advances), to knowing a respectable amount.  And since breast cancer has now become part of my forever, I think I’m heading towards PhD status. Much of what I have learned has altered some of my basic assumptions: of who will be a breast cancer patient (not me, of course), what treatment is involved, what chemotherapy is like, and who will have a recurrence/metastatic disease (again, of course, not me!).

I was wrong on all counts.

First, I couldn’t count on lack of family history, my generally healthy lifestyle and overall excellent health, or regular mammograms and exams.  Cancer thumbed its nose at all of that. In April 2010–while trying to print out my boarding pass for a trip to Mexico and a week of intensive yoga, hiking, and vegetarian meals—I felt a lump just above my right breast.  I was not doing a self-breast exam; I think I was scratching under my arm.  If my Internet connection had been faster, I likely would not have found it.

Second, once I swallowed the “you have breast cancer” news (and bought a fabulous pair of retro-vintage high heeled mary janes in ecru lace with black leather trim), I thought I was just meeting with my surgeon to schedule a surgery date.

photo

(said mary janes)

I went alone, planned to drive to my office afterwards, hopefully in time for a late-morning meeting.  What was the big deal? Just a lumpectomy, I thought, maybe an estrogen-lowering drug . . .  but no, a diagnosis I’d never heard of: “triple negative . .   chemotherapy . .  you will lose your beautiful hair . . . “  I could not swallow those words.  The shoes did not help.  I called my two best friends who came to get me and my car, and stayed with me until my husband could get home.  He proceeded to refinance our mortgage at a lower rate.  I have no recollection of what I did for the rest of that day.

Third, I assumed chemo patients were pale, thin, and sickly, and expected to have my head in the toilet for days. Here, the reality was better than my assumptions. While chemo is no day at the beach, it can be livable and tolerable.  I worked, continued my workouts and yoga, and never felt nauseous, thanks to the advances in treatment of chemo side effects.  I got pedicures, which I once would’ve thought were verboten for chemo patients. I actually gained a bit of weight from steroids, and I never really looked sick, unless someone caught a glimpse of me without one of my wigs on (which did occur in yoga—95 degrees and sweat are not good for wigs!)

Fourth, once I got through surgery, chemo, and radiation, my “beautiful” hair grew back, and I became less fatigued (although fatigue never completely went away), I thought I was home free.  My chance of recurrence was decreasing every year, and at this point was only about 5%.  On October 14, 2012–exactly 2 1/2 years out AND my 56 1/2 year birthday– I proudly participated in LBBC’s Yoga on the Steps fundraiser in DC,  and was the top individual fundraiser.  (Yay me, and yay, my generous, thoughtful friends and family!) I was called up to the stage and given the microphone & announced that I was cancer-free, exactly halfway through my five year milestone. Yay me, yay science and medicine, yay life!

Wrong again, Mary Lou.

You’ll find the second half of Sandi’s first LBBC blog story on Thursday.  In the meantime, you can learn more about Sandi by visiting her own blog, Cancer Diva 4 Ever.

LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct 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.


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