Get [talking] with us. (Part 2)

This is the second of a two-part blog written by Living Beyond Breast Cancer supporter, Mark Plamondon. Mark’s story is one of many LBBC will be sharing with you in 2016 as we recognize 25 years of service to those impacted by breast cancer. Mark told the first part of his story earlier this week.

Lee’s breast cancer was back. It had metastasized to her bones, liver and brain. We were faced with both the knowledge of how she would in all probability die and the statistics to determine how long we had left together.  The luxury we had when first married and starting our family of measuring time in months and years had been replaced by increments of weeks and days. No matter how hard I tried, it was impossible to stop the voice in my head that kept asking “when.” Treatments began and ended.  We had good days.  We had bad days. We laughed and we cried. We felt connected.  We sometimes felt alone.


Remember, this was during the mid-90s. People whose lives were being changed by life-threatening illnesses didn’t have access to the many resources we have today. People had to create them or as in our case, find them through circumstance and luck.  We learned about Living Beyond Breast Cancer from Lee’s radiation oncologist, Marisa Weiss. Marisa had started LBBC just a few years before for women to connect with each other to find information and to get support.

“It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.”

It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.  If I had to guess, I’d say it just happened over a period of time. We came to depend on LBBC, for the support we received and equally important for the support we were able to give. As I mentioned earlier, Lee was a great communicator. There are lots of good communicators out there, people who make answers to questions about complex issues and concepts easier to understand. But there are far fewer who actually take the time to listen to the question first. That was Lee. So it’s easy to understand why she found herself drawn to an LBBC resource that continues to this day.

In 1997 the Survivors’ Helpline launched nationally, but back then it was a local phone line. It was staffed, a few hours a week, by volunteer women diagnosed with breast cancer for women diagnosed with breast cancer. It was a place where callers could find someone else similar in age or stage of diagnosis.  It gave women the chance to learn they weren’t alone and that what they were feeling was valid and real and important.  That it was OK to talk about it.  To communicate.  As a volunteer, Lee found a purpose in helping others. It gave her the chance to use cancer instead of it using her.  It helped her assign meaning to it. I supported her and the passion she had for the service because it was contagious. She advocated for it, pushed it, helped grow it. She remained passionately committed to it until the day she passed away.


Less than a year after she was gone, I got a call from LBBC’s executive director Jean Sachs.  A young man, who’d just lost his own wife to breast cancer, had called the Survivors’ Helpline.  He was distraught, mourning a loss he was unable to accept or understand. I was asked to call him.  I agreed.

When I did, we began our conversation learning more about each other. He was younger than me.  Not a huge difference but enough that we were at different places in our lives. He was without children and I had two young boys. Grief was an emotion we both were dealing with, but in very different ways. Yet we immediately felt a camaraderie. Regardless of our differences, we were connected by something that was both horrible and profound and it made me appreciate even more Lee’s passion to communicate with someone who shared an experience that had changed their lives in an unimaginable way. I’d been asked to make a call to help a stranger in need.  But somehow, it was helping me.  It felt RIGHT.

My relationship with LBBC has only grown stronger since then. I served on the Board for 10 years.  I’ve worked on numerous projects where my marketing experience was put to use, including expanding the Survivors’ Helpline and establishing it as a core LBBC program. It’s been amazing watching LBBC grow from a local organization helping those in the greater Philadelphia metro to a major player in the nonprofit arena, that helped over 500,000 people in need last year alone.  The Survivors’ Helpline is now called the Breast Cancer Helpline. This toll-free service receives thousands of calls every year from people across the country and even offers the option to chat online if it’s preferred.  People attend LBBC conferences from every state and even other countries.  Yet the more things change, the more they remain the same.  LBBC constantly exceeds expectations.  Each and every member of the staff is an embodiment of the LBBC mission and their desire to connect those in need to trusted information and a community of support is a passion that spills over into everything they do. They are committed, they want to help and they are great at it.

Before I sign off, I’d like to leave you with this.  What I’ve shared with you just happens to be the way Lee and I attempted to cope with the hand we were dealt. It’s just one story, one to include with millions and millions of others. But it was our story and now it’s my story and for that reason I hold it close.

Being diagnosed with breast cancer is tough. Caring for someone with breast cancer is tough. There isn’t a right way to deal with it or a wrong way.  How a person copes can differ in ways really big and really small. It’s important that I recognize that you must find a way through it that works best for you and you do the same for me. I would never suggest there’s one way that’s better than another.

But, I will say this. Talking about what’s happening in your life with someone is better than not talking. The Breast Cancer Helpline is staffed by people who can provide advice, and insight and hope. Callers aren’t only women with breast cancer. Diagnosed men have used the service, too.  So have caregivers, friends, lovers and spouses.  People just like you, who given the chance can share whatever is on their mind with someone who completely gets it.

You don’t have to go through this alone. There are people who can help if you take the first step.  Call the Breast Cancer Helpline.  They helped Lee.  They helped me.  I’m confident they can help you, too.  They may even be able to make things a little more RIGHT in your life.

Exclamation point.

25th Anniversary Mark

The Breast Cancer Helpline is a service provided by LBBC. Helpline calls are answered live Monday – Friday from 9 a.m. to 9 p.m. ET. At all other times, just leave a message; calls are returned within 24 hours and often much sooner. Online chat is also available. Both are free and confidential.

If you have an LBBC story you would like to share as part of our 25th Anniversary Blog Series, contact Kevin Gianotto by emailing

It’s About You: Lynn Folkman’s Story

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.   Continue reading

Getting On Track – LBBC’s Reimagined Fall Conference

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.  Continue reading

Blog Back: Healing and Embracing Change After Breast Cancer

LynnFolkmanLynn Folkman, manager of our volunteer programs, wrote her Blog Back post  about her personal growth after reaching her 5-year “cancerversary.”  Read her story and check out our past Blog Back columns.

“Feels like some kind of wild ride but it’s turning out just to be life going absolutely perfectly.”

Every morning, while having my espresso, I view a piece of artwork with the above statement and allow it to resonate in me.

In March 2009, I was diagnosed with stage I ER, PR and HER2-positive breast cancer. I have always been a believer that things happen for a reason. Although certainly at the time, I could think of no good reason why breast cancer and chemotherapy would be on that list. As 2014 began, I was rapidly approaching my 5-year mark and found myself filled with a variety of emotions: joy, sadness, anxiety and fear. Continue reading