Archive for the ‘treatment’ Category

It’s About You: Lynn Folkman’s Story

September 4, 2014

emailHeader760x1604_BlogResizeAt this year’s annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, we’re not just providing you with the unique information you seek; we’re offering you the chance to connect with others and learn that you’re not alone.  While being treated for breast cancer, Lynn Folkman went to her first-ever LBBC fall conference in 2009. She blogs about that day and the importance of creating the conference experience you want. Lucky for us, Lynn joined the team at Living Beyond Breast Cancer in 2012 as our Community Engagement Manager.

Lynn Folkman LBBC Fall ConferenceIt was fall 2009 – I had just completed chemotherapy, radiation therapy and was a few months into my year of taking trastuzumab (Herceptin) and I was exhausted. I found out about the LBBC Annual Fall Conference through one of my support groups and the thought of attending alone was too overwhelming for me, so I agreed to attend with a friend I met during treatment.

The conference that year was held at the Pennsylvania Convention Center. I was a bit nervous about attending, as I had previously worked at the Convention Center and still knew quite a few people there, and they did not know that I had breast cancer. As well, the tables were turned; I was a meeting planner and instead of producing the event, I was experiencing the conference as an attendee.

I was in an emotionally raw and vulnerable state. I was at the point in my treatment where I often wondered if or when I would ever feel like myself again. I was tired of hearing the comment, “You look really great!” I longed for a day where I could be invisible and no one would know that I had breast cancer. However, I was still mostly bald and there was no masking what I was currently experiencing. I was apprehensive about having to endure glances from people who knew me, which would be mixed with a combination of sympathy and trepidation.  They were used to the vivacious energetic Lynn, not the exhausted Lynn.  How could I possibly fake it when I did not even have the energy to do so?

A few things occurred that day which continue to deeply comfort my mind and spirit and reinforce the special place in my heart for the LBBC Fall Conference. Since it was my first time attending, I had no idea what to expect. The day began with the opening session, the speaker welcomed the group and then asked people how far out they were from the time of their diagnosis. When your year was called, you were instructed to raise your hand. One year and under, my hand went up. I don’t remember the exact breakdown, but it went something like this: 1-5 years, 5-10 years, 10-15 years, more than 15 years and so on.  What I do remember is being overwhelmed as I heard cheers and looked around the room and saw so many raised hands and proudly smiling faces.   (more…)

Getting On Track – LBBC’s Reimagined Fall Conference

July 30, 2014

emailHeader760x160Our annual fall conference features three tracks because breast cancer is not just one disease. Clifford A. Hudis, MD, chief of the breast medicine service and attending physician at Memorial Sloan Kettering Cancer Center in New York City, wrote this blog post about the reasons for these tracks and how breast cancer treatment became more individualized. A member of LBBC’s medical advisory board, Dr. Hudis will lead our morning plenary session on metastatic breast cancer. 

Hudis_lbbcblogpostGiven LBBC’s recognition that not all breast cancer is the same and not all patients need the same information, it is natural to see that the annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, is organized in tracks that enable participants to most efficiently focus on what they find to be most relevant. 

Not Just One Disease

Starting with oncology pioneer George Beatson’s 1896 report that some, but not all, women with advanced breast cancer responded to treatment that reduces estrogen in the body, it was clear that we confront more than one, uniform disease. The subsequent description of the estrogen receptor by cancer researcher Elwood Vernon Jensen in 1958 simply allowed us to test for what we already knew – that some cancers are more or less likely to respond to hormone therapies.

The more recent description of the human epidermal growth factor receptor–2 (HER2) and the development of effective treatments that target it added another dimension to “binning” breast cancers. With effective hormone and anti-HER2 therapies we can no longer pretend that cancer is cancer is cancer. One size does not fit all, and one disease is not the same as another.  (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…)

Breast Cancer Awareness Month Recommended Reading, Part III: “The Emperor of All Maladies”

October 31, 2013

LBBC’s writer and web content coordinator Josh Fernandez concludes our three-part book review series for Breast Cancer Awareness Month (BCAM) with a write-up on “The Emperor of All Maladies: A Biography of Cancer.” The Pulitzer Prize-winning book was written by Dr. Siddartha Mukherjee, who spoke at our 2013 Annual Fall Conference: News You Can Use. 

The Emperor of All Maladies: A Biography of Cancer (Written by Siddartha Mukherjee, MD, PhD, published by Scribner, 2010)

After having to read Edward Jenner’s “Vaccination Against Smallpox” during my sophomore year of college, I thought I would never again pick up, let alone enjoy, another nonfiction science book. Despite the importance of that text, and my nerdy ways — I enjoy reading sociological and nutrition science text books, balancing chemical equations for fun and I recite “Battlestar Galactica” and “Buffy the Vampire Slayer” episodes by heart —nonfiction science books had been ruined for me.

Nearly 6 years later, I picked up a copy of Dr. Siddartha Mukherjee’s Pulitizer Prize-winning book, “The Emperor of All Maladies: A Biography of Cancer.” About 40 pages in, I was captivated by Dr. Mukherjee’s prose and storytelling. This renewed my appreciation for nonfiction science narratives. (more…)

Unveiling the Cancer Insurance Checklist!

September 27, 2013

As we find ourselves just a few days away from the opening of states’ Health Insurance Marketplaces/Exchanges established as part of the Affordable Care Act (ACA), Living Beyond Breast Cancer is pleased to announce the launch of the Cancer Insurance Checklist, a resource developed in partnership with 18 other cancer and healthcare advocacy organizations, with the generous financial support of Novartis Oncology. 

Cancer Insurance Checklist_Banner Ad_FINAL

An estimated 7 million uninsured or underinsured people will be using the Health Insurance Marketplaces/Exchanges  to obtain health insurance coverage in 2014. Knowing this, Living Beyond Breast Cancer is pleased to present the Cancer Insurance Checklist , a tool designed with several partner organizations specifically to help those with a history of, at risk of developing, or presently diagnosed with cancer find the insurance plan within their budget that best meets their healthcare coverage needs.

(more…)

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

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.

How I Learned to Stop Worrying and Love Tamoxifen

April 18, 2013

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Most of you already know Randi from her many contributions to the LBBC blog.  Today, Randi gives her take on tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. In her latest post, the first of a two-part series, Randi shares with LBBC readers her experience and thoughts on these latest findings.

I’m still not a full-fledged Tamoxi-Babe.

There.  I admit it.

But after reading lots of information released since The Lancet published a study showing the probability that tamoxifen treatment for 10 years instead of 5 decreases both the rates of mortality and chance of recurrence in women with breast cancer, I may find myself stuck as a passenger on Train Tamoxifen for a few more years.

Pass the happy pills (we’ll get to that in a minute).

I say “stuck” because I was hoping that train was coming to the station.  I was first given tamoxifen after I completed my treatment plan for breast cancer, which was ER-positive (lumpectomy, chemotherapy and radiation).  I honestly can’t recall the physical side-effects because this little thing called chemo-brain got the best of me (we’ll talk about that some other….what was I saying?) Anyway, after the first few months of tamoxifen treatment, the unexpected happened.

“Seriously?  Did you just say I have a mass growing on my left ovary, which is going to result in the need for me to have complicated surgery? Because believe me, that wasn’t in my cancer plan.”

Seriously.

My body betrays me again.  And then, a little voice in my head started asking if the tamoxifen could have been the reason for my gynecological “problem.” And before you say, “But Randi, studies indicate there’s maybe only a small chance of that happening,” I get it.  I really do, so thank you.  But, “small” ain’t “zero” and I already proved my ability to beat the odds by being diagnosed with breast cancer in my 40s so I know all about odds and how somebody needs to be in the “small” group in order for there to even be a “small” group and deal with the fact that it’s sometimes better to be a zero.

I digress.

As I recuperated from the big hysterectomy bag of a nightmare, my oncologist put me on an aromatase inhibitor, the results of which for me were some messed up side effects. Joint pain 24/7 bad enough to feel like I was going through chemo all over again. I couldn’t get out of bed without being in pain. I feared my days were numbered when I had difficulty just lifting my legs over my bed or unfolding my fingers one-by-one. I felt arthritic and old. Did I mention I was also cranky and belligerent? Like that crusty ancient neighbor we all had in the old neighborhood whose house we ran past because word on the street was she’d try to fatten you up with the gingerbread cookies she used as shingles on the roof of her house.  On the outside, I didn’t look a day over 40, but I felt like a 90 year-old on the inside.

After months of complaints and many aromatase inhibitors later, I came full circle back to tamoxifen. Ironic.  Even worse, it was Alanis Morissette irony better known as the “isn’t it ironic that the things I sing about in this song called “Ironic” aren’t actually ironic but really are just bad luck” kind of ironic. And that little voice was in my head again and it was asking if I was putting back inside of me the very thing that had got me to where I was in the second place. I wondered again if it caused me to lose my female reproductive parts. I even begged my oncologist to use me for a study regarding gynecological masses after taking tamoxifen.

“Not enough data.”

Again. Seriously?

I am the data!

And now The Lancet study, those aforementioned happy pills and a ticket to ride Train Tamoxifen.

I can tell you right now that I’m willing to bet my…

Wait. I was going to say eye teeth but on second thought I’m not voluntarily going to give up another piece of me. Let’s start again.

Randi’s story concludes next week with part two of The Seven Year Itch or How I Learned to Stop Worrying and Love Tamoxifen.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

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.

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(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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