Turning the Corner

Changing My Identity

In December 2006, I was diagnosed with Stage 3 breast cancer at the age of 38. At this point in my life, my identity was wife, mother of three boys–ages 3, 2, and 11 months–and lecturer of occupational therapy. In a moment, my identity changed to breast cancer patient. My personal journey through treatment was arduous with life threatening surgical complications, overwhelming due to chemotherapy side effects and anxiety-filled “waiting for the other shoe to drop.”

As an occupational therapist, I had helped many people reconstruct their lives after illness and traumatic accidents. Now, I found myself having to reconstruct my own life. I was adrift and needed to figure out my roles of mom, wife, breast cancer survivor, occupational therapist and lecturer. My mother-in-law, offered some sage advice–that one day I would wake up and have turned the corner. Now I’ll be honest here, I’m a little impatient and was constantly looking for the corner.

Finding That Corner

Ann Marie hanging out with her two boys while in treatment.

While in treatment, I attended the YSC National Summit in Washington D.C. One session focused on advocacy and the National Breast Cancer Coalition’s work. Now this was something I could get into! I was able to see the direct relationship between advocacy, research and my own treatment. It was clear there was a lot more work to be done. In my mind, I was trying to put together how all my roles interconnected.

I quickly realized that occupational therapy should be included in cancer treatment. For example, I was told not to lift more than 30 pounds, yet no one offered me any advice or strategies of how to take care of a 30+ pound toddler. This is something I would address with a client if they couldn’t take care of their child. I also thought about energy conservation and lymphedema prevention and role performance.  As I bumbled along in a post treatment haze, I was approached by some OT graduate students that wanted to do their research project related to breast cancer. We decided to look at how roles change for women with breast cancer. Things were beginning to mesh for me and I saw that I could contribute to research on survivorship using my skills as an occupational therapist.


Ann Marie presenting research at the Advanced Breast Cancer Consensus Conference in Lisbon Portugal in 2013.

Back To School

I attended NBCC’s Project Lead in 2010. During lunch, I discussed my work as an occupational therapist and spoke of my interest in survivorship research. I was encouraged to look at cognition and how it changes related to breast cancer treatment, and how it impacts everyday life. As I reassessed where I was at, I decided that it was time to go back to school for a PhD so I could do better research. I enrolled at Virginia Commonwealth University in the Health Related Sciences-Occupational Therapy Doctoral Program. Between attending boys soccer and little league games and helping with homework– it was the support of my family and work colleagues who helped me balance life and being a student.

Where It All Lead

Now I am a doctoral candidate. I’m currently researching the impact of breast cancer treatment on cognition and functional performance. Many a breast cancer survivor has complaints of cognitive changes, but we really haven’t quantified how much this impacts our abilities to do our everyday life activities. Occupational therapy has been named a first line intervention for cancer associated cognitive impairment by the National Comprehensive Cancer Network. So there is a need within my profession to learn more about the cognitive and functional changes after cancer treatment. My cancer journey hasn’t been mapped out well, but I have turned the corner. I’m now able to put together the meaningful things in my life.

The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance

Ann Marie is currently enrolling individuals, who are Stage 1-3, nearing the completion of treatment–chemotherapy only, radiation only or chemotherapy and radiation. For more information about the study, click here



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Metastatic Research Roundup

All week long, we’ve focused on metastatic breast cancer–what it’s like to live with it and how we need to come together to strengthen the breast cancer community. Today, we’re focusing on where we are in understanding MBC and how YOU can support the many organizations and researchers working to expand treatment options and find a way to end MBC all together.

Metastatic Partners

Help Keep Me In The Picture – YSC is proud to be part of the Metastatic Breast Cancer Alliance. Sign their petition to ensure the CDC and SEER have the funding to collect accurate statistics for those with metastatic breast cancer.

A Story Half Told – An initiative by Pfizer in partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer, dispel misperceptions, combat stigma and expand the breast cancer conversation to be more inclusive of metastatic breast cancer.

Metastatic Research Opportunities

Metastatic Breast Cancer Project – Join this nationwide movement of patients, doctors and scientists by sharing your tumor samples so that we can speed the development of future therapies.

Metastatic Trial Search – YSC is proud to partner on this first-ever clinical trial search engine for those with metastatic breast cancer.

The METRIC Study – Recruiting patients with metastatic triple negative breast cancer which over expresses the gpNMB protein to test the effectiveness of a new antibody drug conjugate (a targeted means of giving chemo) called CDX-011. 

Researcher at Towson University Department of Family Studies is looking for a few women, ages 18-40, diagnosed with metastatic breast cancer, who live anywhere in the US and would be willing to participate in a phone or in-person interview. This pilot study is looking at the social support needs of young women with metastatic breast cancer and will be the basis for a larger, future, study. If interested, please contact Professor Ginter at aginter@towson.edu.

Metastatic Research Articles

How a small implanted device could help limit metastatic breast cancer – A study team from University of Michigan found that a “scaffold” made of biodegradable FDA-approved materials, implanted under the skin, captured metastatic breast cancer cells and slowed disease progression in mice. Mice with the scaffold implanted lived longer. It is thought that the scaffold may enable earlier detection of metastatic disease and may improve outcomes because cancer cells “caught” can be examined to determine best treatment. The research still needs to be proven in humans.

70-Gene Signature Could Help Early-Stage Breast Cancer Patients Avoid Chemotherapy – A recent study in the New England Journal of Medicine examined the use of the MammaPrint 70-gene signature test in patients at high clinical risk of breast cancer recurrence but low genomic risk. These patients were randomized to chemo versus no chemo and no difference was found in distant metastasis. If the test was used in all women at high clinical risk, it was estimated that 46% could safely avoid chemo.


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Because We Need to Stop Losing the Women We Love

Another Phone Call

A couple weeks ago, on the eve of “Pinktober,” a fellow breast cancer survivor called me. I immediately knew from the tone of Kim’s voice that something was very wrong. It was–our friend Sioned Davies had just passed away from metastatic breast cancer at the age of 49. Sadly, this was not the first time that Kim and I had had a similar conversation and we both know it won’t be our last.

An estimated 40,000 women will die of metastatic breast cancer in the United States each year and over 1,000 of them will be under age 40. A JAMA article claims that the incidence of metastatic breast cancer, diagnosed “de novo” (at time of original diagnosis) is increasing in women under 40.  Young women are more likely to get the most aggressive forms of breast cancer and more likely to die (compared to older women) in the supposedly less aggressive (ER+) form of the disease. (For more info)

What is metastatic breast cancer (MBC)?  

MBC is breast cancer that has spread beyond the breast to other parts of the body–typically the bones, liver, lungs or brain, although it can also appear in other spots. Called “stage IV” breast cancer, it is now deemed incurable, and treatment focuses on controlling the cancer as long as possible. Women with MBC are constantly in treatment and when their current treatment stops working, they move to another one, then another, then another. Some women with MBC can live a long time with the disease, even over 10 years. However, the average length of time between MBC diagnosis and death is under 3 years. For Sioned, it was three years.

Anyone can be diagnosed with MBC.  

There is simply no cure for breast cancer and anyone who tells you they are “cured” is engaging in wishful thinking. Even if you were initially diagnosed with stage 0, I, II or III breast cancer it doesn’t matter–it can still recur and become stage IV. Catching your breast cancer “early,” does not guarantee that you will escape an MBC diagnosis. Even if you are five years, ten years or more years out from your original breast cancer diagnosis, it can still recur and be stage IV. Sioned had been diagnosed with stage I breast cancer, treated and apparently disease-free for 6 years when diagnosed with MBC.

Women diagnosed with MBC did NOTHING “wrong.”

Deanna called Kim and I to join her at the hospital where Sioned was awaiting test results.  We three were in the hospital with Sioned when the doctors told her that she had MBC. Her first reaction was to question what she had done “wrong” to receive such a diagnosis. And she’s not alone — some people think that if you were diagnosed with MBC, you must have done something “wrong.”  You ate the wrong foods, you didn’t exercise enough, or you must have done the wrong treatment years ago. But, that is just bunk. No one knows what causes MBC or how to prevent it. Some of the healthiest people I know, who exercise and eat well, are diagnosed with MBC. It does not discriminate.

MBC is isolating.

Being diagnosed with breast cancer at a young age is isolating enough, and a diagnosis of MBC at a young age is even more so. Sioned turned to other women living with MBC and found a wealth of information and support–way beyond what those of us with early stage disease could provide or understand.  These connections were crucial for her and while she initially was the one seeking support, her role evolved to one where she was the supporter of others with MBC. YSC offers free Resources for MBC support including online video support groups, Face 2 Face networks, SurvivorLink, Online Community Boards, and the Metastatic Navigator.


Shaina, diagnosed with MBC at 25, and Allie, diagnosed with MBC at 28.

Women with MBC need information…

To stay on top of their treatment and know what new options or clinical trials may be available to them. Metastatic Trial Search is a tool which enables them to quickly find applicable clinical trials. MBC Project is a research initiative that asks women with MBC to share their tumor specimens and information in a quest to speed research discoveries.  Throughout the project they will be provided regular updates and informed of any discoveries that their help enabled the MBC Project to make.

Women with MBC want to be heard.

Especially during October, the needs and issues of women living with MBC often get overlooked because what they have to say and the reality of their disease may not be pretty or pink. But they have a voice and need to be heard, to be understood, to make clear that the status quo is not working — we are still losing too many women to breast cancer.

You can take action.

Sign YSC’s #12Ktoomany petition that asks for dedicated research funding into breast cancer in young women, with 50% to be focused on MBC. You can also join METAvivor’s StageIVStampede in Washington DC as they stage a Die-In and visit their Congressional representatives.

We have “Metastatic Awareness Day” because Sioned deserved more.

More time with the ones she loved, more research to understand why this happened to her, more treatment options and more public awareness of what she faced. So did Kim Casamassima, Kara Guzzetti, Sarita Jordan, Crystal Brion, Randi Rosenberg, Diana DiMare, Amber Gillespie, Ishiuan Hargrove, Aubrey Morgan, Jenn Tracz, Alisha Prince, Suzanne Osborne, Kristen Martinez, Krysti Hughett, Bethany Hance, Jill Cohen, Carrie Ivy, Andrea Media, Michelle Gherardi, Gwendolyn Bibb, Paris Wagner, Michelle Howe, Debbie Molis, Cindy Ruben, Kat Werner, Jody Carrico, Yolanda Steinman, Kim Barnhart, Jana Peters, Patti Balwanz, Lisa Covington, Deb Bollman, Colleen MacAdam, Annie Schierts, Jill Johnson, Wendy Schwarz, Tiffany Dlouhy, Christine Sansone, Mary Knipp, Angie Elliott, Dona Canales-Higgins, Cynthia Rubin, Tracy Pleva Hillm and so many more.

Honor those you’ve lost to MBC by sharing their names in the comments below.

Metastatic Breast Cancer Awareness Week

Until 2009, MBC was not often mentioned during Breast Cancer Awareness Month. Nine MBC patients, including one of YSC’s early members, Randi Rosenberg, traveled to Washington, D.C. to change that. Their efforts resulted in the passing of a unanimous resolution by Congress declaring October 13 as Metastatic Breast Cancer Awareness Day.

Every day this week features blog posts from young women living with metastatic breast cancer or experts on metastatic research.

Allie Vreeland share how being diagnosed with MBC has changed her outlook on life, explaining that we must all face mortality at some point, so it’s important to live life first and not waste it.

Lara MacGregor, Founder of Hope Scarves, shares how MBC changed her view on survivorship and how we can work together to strengthen the breast cancer community.

Melissa Bingham shares the mental and physical impact of MBC and how she dares to hope for a chance to grow old with her family.

We urge you to sign our #12Ktoomany petition now.
Help us reach our goal–to collect 12,000 signatures to represent the 12,000 young women who will be diagnosed under 40 this year in the US. Because we need to stop losing the women we love.


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The Things I Don’t Talk About

Let’s talk about the things I don’t talk about. The things I carry with me each day—silently—as I go about my business living as close to a normal life as I can. The things that weigh on my shoulders—things that I didn’t even know were there—until they’ve been lifted.

Hi. My name is Melissa. I’m 35. I have two amazing baby boys who are 3.5 years old and 9.5 month old. I’m also married to Mr. Wonderful. A month and a half after I married Mr. Wonderful, I was diagnosed with stage IIA breast cancer. I was 29 years old. I opted for a double mastectomy and four rounds of chemotherapy. I passed my “five year mark” —the point at which your chance of recurrence statistically goes down significantly—in May 2015 without incident. I was 2 months pregnant at the time with our littlest. In January 2016, five weeks postpartum, I went in for an MRI of my neck. There was a lingering “pregnancy pain” that just wasn’t going away. On January 21 I got a call from my PCP who ordered the scan. She said the radiologist wanted me back in to rescan, this time with contrast. There was something “not right.” I went in the next day. I cried on the MRI table and had to pause the scan. I knew. I knew in my bones what was happening. That night I received another call from my PCP to discuss results.

On January 22, 2016 I was diagnosed with metastatic breast cancer a.k.a. stage IV. The pain in my neck was from a tumor that had eaten away half of the left side of my C3 vertebrae. I was 2 months way from turning 35. I hadn’t even had my 6 week postpartum check-up yet.

After the MRI, we went through the whirlwind that is diagnosis and immediate surgeries and treatments to stabilize my neck and get a fuller picture of “the spread.” In addition to my C3, there were metastases to the cricoid cartilage that had narrowed my airway by 40% and required a tracheostomy to be put in place as well as a 4 cm conglomerate mass of nodes and nodules in my right lung, additional spots in various bones throughout the body as well as 3 spots in the brain. Radiation therapy has been my friend and has saved me from a fractured hip and hip replacement and from suffocation and paralysis. I’ve said goodbye to my ovaries, as well as any chance of additional children, am taking a $10,000 a month breakthrough medication ($476 per pill), a daily aromatase inhibitor, a $5,000 once monthly injection for my bones and a about 12-14 supplements, two times a day. In nine months, I’ve had two surgeries, three PET CTs, three individual CTs, 10 or so MRIs, and 46 sessions of radiation … give or take … and I don’t even want to count how many times I’ve had my blood drawn or an IV set.


Melissa and her youngest son.

And so here we are today, 9 months later from that existence-altering event … in a window of calm between scans. I’m 35, and I’m slowly learning to cope. Every morning I wake up and sleep the night before was OK. I often wake up in the middle of the night. Sometimes it’s just because, sometimes it’s because Nicholas wakes … other times it’s because Camden is standing silently next to the bed, staring at me, and his presence alone startles me awake. Yeah, those aren’t the fun wake-ups. Those are the creepy, send your heart racing, why are you standing there in the dark watching me wake-ups. Always fun. But when I wake in the morning, I’m usually only semi-rested, and I’m creaky. I put my feet down, and they hurt. They’re stiff. I reach for my glasses and my hands are stiff. They hurt also from the lack of movement all night. I can’t make a fist with my right hand because experiencing trigger finger with my middle finger from who knows what. It just locks up in the bent position if I try, and then it “pops” semi-painfully when I open my fist all the way. For the most part, these aches in my hands and feet start to go away as I start to move. But there’s always some level of ache to them, and I’m constantly stretching my fingers and toes throughout the day.

The next thing I usually notice when I wake up is a pain in my spine. The location varies, but it’s usually always a sharp ache somewhere along my spine. Some days it’s worse … some days it’s better … but most days it’s always there. It started shortly after my oophorectomy, and I can only thus attribute it to the severe withdraw of estrogen. In addition to these usual suspects, most often there’s something new each day. An ache, throb, pain, twitch, creak, pop, stab, pulse, twang, knot, crack, pressure, weight … you name it … somewhere else in my body. Big deal right? Everyone has regular aches and pains. I get it. And it’s not the creakiness and errant odd feeling that bother me so much as it is what it does to me mentally. Being in treatment causes me to be hyper aware of my physical state. As someone who was already hyper aware of her physical state in general … this takes it to a whole new level. Each “thing” I feel, I carry with it a monitoring. When did I first notice it? Is it getting better or worse? How long has it been? Do I need to bring it up to my doctor? Is it something … no—it’s nothing … or is it something? It’s a constant assessment of my physical state day to day, hour to hour, minute to minute … over and over again … worrying if it’s progression … if things are just running rampant inside during this period of in-between scans. And then, when I don’t feel anything, I wonder why and worry even more about why I can’t feel anything. It gets exhausting. But I keep going, every day assessing quietly and taking a mental catalog as each day goes on. And that’s just below the neck activity. Layer on top of that, the situation with the brain. Every headache, every ANYthing I feel in or around my head—or anything anywhere else in my body—is there something going on in my brain that’s causing this? Is it a dehydration headache or something more? Am I going to go down in a seizure right here and now? UGH.

In addition to this physical assessment, there’s the daily fatigue. Having low counts in your blood causes fatigue. I’m tired. I usually make it to just past 9 p.m. before I’m crawling in bed myself and am passed out shortly thereafter. If I stop moving, I will fall asleep. I’m sure of it. So I keep busy as much as possible, either physically or mentally. I just keep going. I’m up with the boys at 7 a.m. usually and in bed shortly after the oldest goes down at 9 p.m. Most of the time I’ve got energy enough to keep going full steam all day. But some days, a big outing is enough to slow me down, and I end up wanting to nap with the boys when we get home.

So there’s the physical part, the mental part of the physical part, the mental part of the mental part, and the fatigue. And then there’s Fear. Is eating “this” feeding the cancer? Should I be doing more? What if what I’m doing now is making things worse? How long will what I’m doing work? Will I have to have IV chemo again … or worse? Any regular conversation that talks about the future: future plans, future milestones for the boys, future vacations, future anything … it’s all haunted by the fear. Will I be around to see these plans come to fruition? How long am going to feel “good?” Will I be around to see my boys start school … start middle school … high school? Do I dare to dream  … dare to hope … that I get to see at least one of my sons get married? The fear isn’t always front and center … no. It’s most often a passing thought … an errant question that runs through my head quickly in the moment … a hypothetical visualization of who and how I might be, or who and how I fear I might be. A shadow that follows my thoughts. It’s there when I look at Nicholas and wonder … does he look so much like me because I’m not going to be around much longer? Is he my mini-me for a reason? Or is it purely just genetics. And if it’s not just genetics, and if something does happen to me, will Mike, in time, be able to look at his sons without significant pain in his heart? And my boys: I can’t even touch those thoughts about them growing up without me.

I wonder about this and many, many other things. And I worry every day. But I won’t go much farther down this path. These are things I don’t talk about for a reason. There are things that come with the territory unfortunately, and, well, there’s no use dwelling on them. No use losing the present to fear and worry. So I let go of what I can and shove that which I can’t, down into the depths, until I’m able to let it go.

Melissa with her family.

These last few weeks have been seriously trying. The “questionable leptomeningeal enhancement” on my brain MRI in August had us all in a serious frenzy. The suggestion of it at my initial neuro appointment injured my spirit in so many ways. It brought Fear front and center. But thankfully, my rainwater cerebral spinal fluid (CSF) came back 100% normal. My neuro onc at this most recent appointment said it would be one thing if it was “mostly” normal, with some things slightly abnormal, but mine coming back 100% normal was a good thing. He reviewed my follow-up brain MRI, and Mike and I stood anxiously over his shoulder. I’m watching the scans and watching his eyes and expression as he’s reviewing, trying to get a read on his reaction to what he’s seeing. And then he pushed back from the computer screen (he sits about eight inches away from the screen when he reviews images), takes his glasses off and says, “I don’t see anything here to get excited about.” And then suddenly I feel SO MUCH LIGHTER. I breathe. And I tremble with relief. I grab Mike’s arm. I just grab him. And I get back to myself and start to ask questions. What about the questionable LMD spot, left temporal left cerebellum region? You don’t see that? He puts his glasses back on, scoots up to the computer and looks again. He swaps out views, scrolls, swaps out more views, scrolls some more. No he says. And I don’t remember much detail after that.

Overall, he concluded that things look normal for me. Two spots of the three spots are identifiable, but smaller and stable. One spot he can’t even find anymore. The questionable LMD area is not there. “Most likely a vein” the radiologist’s report said. So we breathe finally. And we are thankful. So very, very thankful.

I re-scan in two months, which is back in sequence with my regular timing for my 3 month interval PET CT and brain MRI. I started cycle 7 of Ibrance with Letrozole, received my monthly injection in the belly, all with sincere hopes that it continues to work much longer (aka forever). I started back at work this month as well, which I’m excited about, to get back into some normal life again.

And above all else—every day, every moment—with every breath, I give sincere thanks for waking up each day and I dare to hope, just a little bit more. Each time I hug my babies or hold Mike’s hand, I dare to hope that I get the chance to grow old.

Metastatic Breast Cancer Awareness Week

Until 2009, metastatic breast cancer was not often mentioned during Breast Cancer Awareness Month. Nine metastatic breast cancer patients, including one of YSC’s early members, Randi Rosenberg, traveled to Washington, D.C. to change that. Their efforts resulted in the passing of a unanimous resolution by Congress declaring October 13 as Metastatic Breast Cancer Awareness Day.

Metastatic (or stage IV) breast cancer is when cancer has left the breast and surrounding local area and moved to other parts of the body, such as the liver, lungs, bones or brain. Once it has metastasized, there is no cure for breast cancer. The disease turns into a chronic condition with the goal to contain it for as long as possible. Every year, more than 1,000 women under age 40 die from breast cancer. That’s why we’re dedicating this entire week to raising awareness of metastatic breast cancer and advocating for more research on metastatic disease by featuring women who know firsthand what life is like living with stage IV.

Join us every day this week for new blog posts from young women living with metastatic breast cancer or experts on metastatic research.

Please sign our #12Ktoomany petition now.
Our goal is to collect 12,000 signatures to represent the 12,000 young women who will be diagnosed under 40 this year in the US. We’re urging the new President to focus at least 50% of research dollars to examine metastasis in young women, including how to cure metastasis and how to prevent it.

Let’s dare to hope together with Melissa, and other young women facing metastatic breast cancer, who deserve the chance to grow old.



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Living Life OVER Cancer

I was diagnosed with breast cancer in 2007 at the age of 30 while seven months pregnant with our second son. Our world came crashing down–yet through it all, we were focused on hope. Our doctors, friends and family–everyone–believed we would “beat” cancer. And, we did.


Lara is an avid runner. Each year nearly 200 runners hit the streets of Louisville as the Outrunning Cancer charity team in the Kentucky Derby Marathon. Their success earned them “Charity of the year” two years in a row and raised the most money of any local charity involved!

I was the poster child for beating cancer. Literally–I was on a poster for my local Komen Foundation. I ran marathons, climbed mountains, raised my kids with joy and confidence that cancer was behind us. I turned this scary time in my life into something positive to help others by starting a nonprofit organization called Hope Scarves. We collect scarves and survivor stories and pass them on to others in treatment. Since our founding in 2012, we have sent more than 6,000 scarves to people facing over 90 types of cancer in every state and 12 countries. Our oldest recipient is 92 and our youngest, 5. By sharing our stories, we find common ground and process what has happened. We pass along our strength to others.

Yet, in those first years, Hope Scarves was just like so many other cancer organizations blindly telling the “happy side” of cancer. We were focused on survivorship. At a YSC conference in New Orleans, a mother donated a scarf and story in memory of her daughter who had died of breast cancer. I kindly took the story and hugged this shaking mom. But, I tucked that story away, thinking, “We are hope scarves. Not sorry-for-your-loss scarves.” I didn’t want to share sad stories.

How short sighted of me.

In 2014, I developed pain in my low back, which I assumed was from trail running. But, an MRI revealed every cancer survivor’s worst nightmare. Metastatic breast cancer. Cancer had spread to my bones. After seven glorious years, our family was thrust back into the world of cancer. Only this time it wasn’t hopeful. My husband and I have always been the type of people who make a plan and execute. We get things done. But, there wasn’t a clear path. We were devastated to learn my treatment plans would be to “wait and see.” “We will start with this drug and see how long it holds the cancer in check. But, it will progress and then we will try a different treatment. There are many drugs to try, but eventually we will run out of options…“

Confusion. Disbelief.

After all the pinkness–the races, the walks, the soup cans and our society doing just about every possible thing you can imagine “for a cure”…this is the best you’ve got? I was floored. Angry, depressed, numb. How could this be? I fell into a dark depression. I would be responsible for the single most devastating thing my young kids would experience–watching their mom get sick and die. How could this be happening? This diagnosis was nothing like my stage II diagnosis,when people came out of the woodwork to encourage me and share their success stories. This diagnosis was isolating. Terrifying.

Then, I met Mary Ann. She also had MBC, but her laughter and smile didn’t show it. Mary Ann grabbed both my hands, looked me in the eye and said, “If you had five minutes to live, would you spend a second being sad?” She helped me see hope isn’t just found in medical breakthroughs and good scans. It’s found in a hug, laughter and simple moments of living life over cancer. Mary Ann helped me live again.

Mary Ann died this year. 

As I watched friend after friend progress with this disease, I found organizations and people who were working to change the landscape of metastatic breast cancer. I also learned that people in the metastatic community felt so disappointed and left behind by the “pink machine” that they created their own ribbon–it’s teal and purple with a little pink. They created new names like metavivor, forever fighter, lifer. They are defining what it means to live with stage IV cancer.

I am so thankful for their work and the growing movement to bring metastatic breast cancer to the forefront, but more than anything I am upset. The most sick, afraid and hurting of all breast cancer patients felt so alienated by the movement set out to help them that they created their own ribbon. They condemn the pink ribbon. How did an effort set out to “cure breast cancer” become so short sighted?  

And, I was one of them. I was naively focused on survivorship and beating cancer at Hope Scarves–sharing happy stories of people who kicked cancer and went on to live happy, healthy lives.

So, starting with my own organization, I made changes. We stopped saying words like “beat cancer” and instead, we say, “face cancer.” We don’t collect survivor stories at some magical point when you move from a patient to a survivor. No, you can share your words of encouragement and hope at any point. From the moment cancer touches your life, you are surviving. You have a story to tell.

It’s not about living life after cancer. It’s about living life over cancer.

But, more than anything it comes down to research. We expanded Hope Scarves’ mission to invest in metastatic breast cancer research. And, to date, we have committed $150,000. Think of the impact we could make if EVERY breast cancer organization dedicated a portion to metastatic breast cancer research. How quickly the depressing 3% given to research would increase. Could we accelerate the pace of discovery to change treatment plans from waiting for the cancer to grow to stopping it? Could we extend lives? Could we save lives?

What if, instead of metastatic patients feeling alienated, they become the VERY CORE of the pink movement? The deepest, most vibrant pink of all. Early stage survivors would celebrate their health and then DEMAND more money for metastatic research. Because the reality is, once cancer impacts you, the chance of reoccurrence is 30%. It doesn’t matter what stage you were originally diagnosed or how long time passes. But, if research can find a way to make this a chronic disease instead of a DEADLY disease–every one of us in pink is better off.

We, as a breast cancer community, HAVE TO BE the driving force to make this happen. We can’t just celebrate the happy stories. We must tell the WHOLE STORY.

My goal is simple–I want metastatic patients to be the core of the breast cancer movement. For each of us to feel supported through more research dollars, encouraged by early stage survivors, understood and not forgotten.

Raise your voice. Demand more money for metastatic breast cancer research. Reach out to someone facing stage IV breast cancer.

Together, we can ALL live life over cancer.

Metastatic Breast Cancer Awareness Week

Until 2009, metastatic breast cancer was not often mentioned during Breast Cancer Awareness Month. Nine metastatic breast cancer patients, including one of YSC’s early members, Randi Rosenberg, traveled to Washington, D.C. to change that. Their efforts resulted in the passing of a unanimous resolution by Congress declaring October 13 as Metastatic Breast Cancer Awareness Day.

Metastatic (or stage IV) breast cancer is when cancer has left the breast and surrounding local area and moved to other parts of the body, such as the liver, lungs, bones or brain. Once it has metastasized, there is no cure for breast cancer. The disease turns into a chronic condition with the goal to contain it for as long as possible. Every year, more than 1,000 women under age 40 die from breast cancer. That’s why we’re dedicating this entire week to raising awareness of metastatic breast cancer and advocating for more research on metastatic disease by featuring women who know firsthand what life is like living with stage IV.

Join us every day this week for new blog posts from young women living with metastatic breast cancer or experts on metastatic research.

Please sign our #12Ktoomany petition now.
Our goal is to collect 12,000 signatures to represent the 12,000 young women who will be diagnosed under 40 this year in the US. We’re urging the new President to focus at least 50% of research dollars to examine metastasis in young women, including how to cure metastasis and how to prevent it.

And as Lara so eloquently stated “Together, we can ALL live life over cancer.”


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The Hard Part is Living First

Once you’ve been diagnosed with cancer you’d never think of there being worse news…until you’re diagnosed with cancer again. Feels something like this, ‘Hey you’ve reached the light at the end of the tunnel! You see it? Looks nice out there, right? Now turn your a** around.’

In May of this year, I had my reconstructive breast surgery. I was starting to feel like myself again and this surgery symbolized the last step, “the light at the end of the tunnel.” About two weeks later I had a follow-up with my Oncologist. Some routine blood work led to a pet scan and a biopsy of my liver, which showed metastasis. Needless to say I was devastated. The thought of recurrence had never even crossed my mind. I truly believed I could put it all behind me and move on. I was wrong.

After the flashbacks of bald heads seised, I began doing research–reading anything and everything about metastatic breast cancer. The more I read, the more scared I became. I was becoming painfully aware that this disease could take years off of my life and many milestones with it. But I also gained a sense of control. Ya know that whole knowledge is power thing.

What I discovered is I am not alone. There are many treatment options and the list is often growing. Countless clinical trials are available, and most importantly there are women thriving with MBC. I found hope.

For those who know me, I am the queen of optimism and if there’s a silver lining I will find it. And so I did. I came to the comforting realization that I am no different than anyone else. I am mortal. You’re thinking, how the hell is that comforting right? Look at it this way, nobody knows what comes next. We’re all in the same unsteady boat. Maybe because I have metastatic cancer, the future is bullying me into the present more than you, but what we have is the same.


My F*ck Cancer trip to Disney!

Cancer or no cancer, as you read this, this very moment, this is it. Only, I have become more sensitive to it. Maybe I’ve been given a chance to let go of the future in order to focus on the now. Maybe I’ve been given an opportunity to make my future plans my present. This is something anyone can do, you may even be doing it. But I think so many of us sleep-walk through life, waiting for something to wake us up. Stage IV breast cancer woke me up.

I think what I’m getting at is that I may be sick and I may not have 30, 20 or 10 years ahead of me, but you may not either. Is it scary? Yeah. But do you live in fear of dying every day? Most likely not. So why should I? We’re all inevitably going to die. The hard part is living first.

I look at this diagnosis as an opportunity and a clean slate. To live the life I want. To spend the time I have doing things that bring me joy and to cherish each moment. I am focusing on today, on what’s important to me and on being a better and kinder person to those who are important to me. It’s certainly not easy but it’s the life I’ve been given and there’s no way I’m going to waste it.



Metastatic Breast Cancer Awareness Week

Until 2009, metastatic breast cancer was not often mentioned during Breast Cancer Awareness Month. Nine metastatic breast cancer patients, including one of YSC’s early members, Randi Rosenberg, traveled to Washington, D.C. to change that. Their efforts resulted in the passing of a unanimous resolution by Congress declaring October 13 as Metastatic Breast Cancer Awareness Day.

Metastatic (or stage IV) breast cancer is when cancer has left the breast and surrounding local area and moved to other parts of the body, such as the liver, lungs, bones or brain. Once it has metastasized, there is no cure for breast cancer. The disease turns into a chronic condition with the goal to contain it for as long as possible. Every year, more than 1,000 women under age 40 die from breast cancer. That’s why we’re dedicating this entire week to raising awareness of metastatic breast cancer and advocating for more research on metastatic disease by featuring women who know firsthand what life is like living with stage IV.

Join us every day this week for new blog posts from young women living with metastatic breast cancer or experts on metastatic research.

Please sign our #12Ktoomany petition now.
Our goal is to collect 12,000 signatures to represent the 12,000 young women who will be diagnosed under 40 this year in the US. We’re urging the new President to focus at least 50% of research dollars to examine metastasis in young women, including how to cure metastasis and how to prevent it.

Together, we can help young women like Allie.

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Nine Reasons To Turn Breast Cancer Awareness Into Action

“I carry the sadness of breast cancer every day. This sadness and pain continually moves me to action and advocacy, for a cure and for better quality of life for those affected by breast cancer.” - Jennifer, diagnosed at 32

“I carry the sadness of breast cancer every day. This sadness and pain continually moves me to action and advocacy, for a cure and for better quality of life for those affected by breast cancer.” – Jennifer, diagnosed at 32

I think it’s pretty safe to say we’re all aware that tomorrow marks the start of Breast Cancer Awareness Month. You’re probably reading this wondering what YSC has in store this year as we take the stage and raise our voices to the world on behalf of all young women facing breast cancer.

This year is especially important. Breast cancer is officially an epidemic, with an annual increase in incidence of 3.1%. Young women make up 33% of global diagnoses, and women of reproductive age are dying from breast cancer at an annual increase of 1.8% per year.1  Letting people know that young women can and do get breast cancer just isn’t enough. This year alone, more than 12,000 women under 40 will be diagnosed in the U.S.2

We need to do more. That’s why this October we’re on a mission to turn awareness into action to change the statistics. Together, we’re going to drive the medical and research communities to focus more research on women under 40—especially those with metastatic breast cancer—to ensure that young women stop dying from this disease. 


Here are nine startling reasons why you MUST join us this month by signing our #12Ktoomany petition

1.) Breast cancer is the most common cancer in women ages 15-39.3 And yet, breast cancer in young women is rarely studied. We have only made incremental strides toward understanding the environmental factors (internal and external) that cause breast cancer in young women and how to best treat them.

2.) There is no effective breast cancer screening tool for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool. Nearly 80% of young women diagnosed with breast cancer find their breast abnormality themselves.4

3.) More and more evidence tells us that breast cancer before age 40 differs biologically from the cancer faced by older women.5 This means we need different treatment options.

4.) Breast cancer in women under 40 is more aggressive.6 Young women face greater mortality rates and an increased risk of metastatic (or stage IV) recurrence, which is when cancer spreads to other parts of the body.

5.) There is no cure for metastatic breast cancer. Every year, more than 1,000 women under age 40 die from breast cancer.2 

6.) Breast cancer treatments like chemotherapy negatively affect fertility. Doctors don’t always discuss the potential fertility risks with their young patients before treatment, but they should.

7.) Breast cancer treatment brings unique, significant side effects for young women, including the possibility of early menopause, sexual dysfunction and a higher prevalence of psychosocial issues like anxiety and depression.7

8.) Breast cancer disproportionately affects young African American women. African American women under age 35 have rates of breast cancer two times higher than caucasian women under age 35, and they die from breast cancer three times as often.8

9.) Vice President Biden’s Moonshot Advisory Panel recently issued its top ten opportunities in cancer research. While identifying pediatric cancer as an appropriate area to focus, it completely overlooked and failed to mention adolescent and young adults (AYAs), ages 15 to 39.

We’re collecting 12,000 signatures to support our #12Ktoomany initiative, representing the number of young women who will be diagnosed with breast cancer this year. In January, we’ll present it to the new President of the United States. Whether you are a young woman diagnosed with breast cancer, love a young woman diagnosed with breast cancer, or just care about putting a stop to this disease, I hope you’ll sign. It only takes a minute, and it can make a huge difference. 

To sign the petition, visit petition.youngsurvival.org

We also partnered with renowned photographer, Spencer Kohn, on a photo series where breast cancer survivors confront their struggles. In their portraits, we see the external: the face that society sees. Strong, beautiful, but a mask. When they look in the mirror, we see the truth—a reflection of breast cancer’s collateral damage on these young women.

Zach Jopling, a Brooklyn-based DP and editor, captured the stories and experiences of these breast cancer survivor models in a powerful video. 

We’ll be sharing these incredible photos and quotes from each survivor model every day on Facebook, Twitter and Instagram. Follow along, engage, share and help us spread the word!

1 Forouzanfar M et al., “Breast and cervical cancer in 187 countries between 1980 and 2010: a systematic analysis,” Lancet 2011; 378: 1461-84.
2 American Cancer Society. Breast Cancer Facts & Figures 2015-2016.

3 Archie Bleyer et al., “The distinctive biology of cancer in adolescents and young adults,” Nature Reviews Cancer 8 (2008).

4 Ruddy, K. et al., “Presentation of breast cancer in young women,” Journal of Clinical Oncology 27:15S (2009).

5 Ann H. Partridge et al., “Breast Cancer in Younger Women,” Diseases of the Breast (4th ed.,), In J. Harris (Ed.) (2010): 1073-1083.

6 Carey K. Anders et al., “Breast Carcinomas Arising at a Young Age: Unique Biology or a Surrogate for Aggressive Intrinsic Subtypes?” Journal of Clinical Oncology 29:1 (2011). Carey K. Anders et al., “Young Age at Diagnosis Correlates with Worse Prognosis and Defines a Subset of Breast Cancers with Shared Patterns of Gene Expression,” Journal of Clinical Oncology 26:20 (2008).

7 Bakewell RT, Volker DL, Sexual dysfunction related to the treatment of young women with breast cancer. Clin J Oncol Nurs. 2005: (6): 697-702. Howard-Anderson J, Ganz PA, Bower JE, Stanton, AL. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors; a systematic review. J Natl Cancer Inst. 2012; 104(5): 386-405. doi: 10.1093/jnci/djr541.

8 Lisa A. Carey. et al., “Race, Breast Cancer Subtypes, and Survival in the Carolina Breast Cancer Study,” Journal of the American Medical Association 295, no. 21 (2006): 2492-2502.


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Categories: News & Updates

Shakti and Bhakti – Our Feminine Super Powers!

Sat Nam

What do the following women have in common?

Diana Prince (Wonder Woman), Katniss Everdeen (The Hunger Games), Hermione Granger (Harry Potter), Natasha Ramanova (Black Widow from The Avengers), Rey (Star Wars: The Force Awakens), and Princess Merida (Disney’s Brave).

Well, as you may have correctly answered that they’re all contemporary fictional super-women known for their determined spirit and awesome “kick-butt” fighting skills. More importantly, I believe, these women exemplify the courage, strength and fortitude inspired by real world warriors and fighters; women who have boldly faced or are facing unwarranted trials and challenges; extraordinary heroines like yourselves.

Additionally, ancient yogic wisdom also teaches that besides the formidable abilities noted above, we, as women, have a particularly magnificent ability to positively influence and shape our lives, bodies and environment.  That ability comes through our divine feminine energies known as Shakti and Bhakti.


Shakit and Bhakti

Shakti and Bhakti are two distinguishable creative powers within every woman that can be defined as:

Shakti refers to the power of the universe that gives women the strength and courage to be fearless and natural agents of change.

Bhakti refers to devotion, selflessness, humility and reverence; it is this power that reminds us to be of service to higher causes and purposes.

In essence, Shakti and Bhakti are the perfect duality of our highest nature: strength and tenderness; courage and humility; influence and devotion. When we become aware of these essences and subtle powers, we can then channel them heal any and all pain and disease. We can also harness their energy to positively influence our bodies, our reality and ourselves.


Calling Upon These Innate Powers

How can we call upon these innate powers so we can willfully integrate them in our daily living and being?  Well, I know of no other more effective method than through Kundalini Yoga and Meditation. For almost 2 decades now, I’ve been practicing and teaching this powerful yoga to others at City of Hope, where I’m the Geriatric Oncology Social Work Program Leader. Additionally, I practice and teach at other yoga studios and community centers in and around Los Angeles. Yogi Bhajan, a master of this technology from India, brought this yoga to us in 1969.


Kundalini Bhakti Meditation

One of the most powerful meditations taught to us by Yogi Bhajan is commonly referred to as the “Kundalini Bhakti Meditation (Adi Shakti Namo Namo).”  Kundalini Bhakti Meditation utilizes a devotional mantra (sacred sound recitation) to invoke the universal feminine creative power and awaken the Shakti and Bhakti powers within us.

Join me as I guide you through this beautiful meditation. Through this medication, you can can begin to immediately connect and intentionally apply these sacred super forces. Meditation helps to dissolve limiting belief thoughts and radiantly charge your entire being to help you face all of life’s challenges (and evil villains ) with renewed hope, vigor, strength and courage.

May you always Blossom, Shine, and Thrive!


Thank you Daisy Yogini for sharing this powerful meditation with us!
Daisy is joining us at the YSC West Regional Symposium on November 5 in Long Beach, CA. Join us for yoga on the beach at Hotel Maya and learn first hand the creative powers of Shakti and Bhakit!
There are still a limited number of tickets available, register now.
Free hotel accommodations available on a first come, first serve basis for anyone traveling more than 25 miles to attend.



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A Little Goes A Long Way

All Shapes and Sizes

I’ve worked with many incredible DIY fundraisers over the last year at YSC. They come in all shapes and sizes. Some are professionals looking to spread awareness in their offices while others want to find a fun way to engage their sorority sisters for Breast Cancer Awareness Month. But every once in awhile, an extra special someone comes along that makes you stop and think “wow, that’s amazing!” For me, that person is Reese.  

A Huge Champion In A Tiny Package

Reese is an extra special DIY Fundraiser

Over the past few years I’ve been interested in donating to charities. It started out by donating to this charity in Canada called WAG (Whistler Animals Galore), but sometime last year I expressed the desire to help out a breast cancer charity. I never really said anything to anybody, but spent plenty of time thinking of a way I could raise money. In May of this year, I started thinking about what to do for my birthday…

I was thinking big — a limo, laser tag and the presents I would get! But then I thought to myself that I don’t really need anymore gifts. The money used to buy those presents could go to a cause rather than to satisfy my immediate wants and short-term happiness. What I did find, though, is that what I did this year instead of getting presents did make me happy. In fact, it might have made me even happier than getting presents!

While looking for an organization to support, I found a lot that I liked, but YSC stood out – especially because it supports young women. Being a young woman myself, I understand that “knowing is not enough.” I wanted to do something and support them. So I donated all my birthday money to YSC.
-Reese Weiden, age 12

Just Imagine…

Reese did in fact donate all the money she raised for her birthday instead of receiving gifts from friends and family. In total, she raised $397.25. You may not think this is a lot, but we know for a fact that this goes along way in helping YSC sustain and expand its programs. Thanks to Reese, we were able to provide 40 young women recently diagnosed with breast cancer our Newly Diagnosed Navigator. Now that’s a big deal!

Can you imagine what would happen if everyone who has benefited from YSC’s programs decided to be like Reese and hosted an easy DIY Fundraiser? We could reach so many young women affected by breast cancer! After all, 12,000 young women this year alone will be diagnosed in the US. So ask yourself as October 1 quickly approaches… “what can I do?” The answer is easy – anything!

So go bowling, make cookies, get crafty or just say “you know what, I don’t need birthday gifts this year.” You may surprise yourself by how happy you feel afterwards. Like I’ve been saying all month – Anyone Can Be A YSC Champion, especially YOU.

Learn more about how to become a YSC Champion, just in time for Breast Cancer Awareness Month or support a current Champion today!



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Categories: YSC Champions

Sex and Intimacy after Breast Cancer: Q&A with a Sex Therapist

What are some of the common issues that young breast cancer survivors face in relation to sexuality and intimacy? What are the questions and issues that come up most often?

Among women I’ve talked to, the most common issue that young survivors bring up is not feeling “sexy” anymore or feeling like they’ve “aged 10 years.” This is so understandable, since breast cancer is such a physically and emotionally taxing experience that changes so many aspects of a woman’s life.

Why is it important to give attention to this topic? What role does sexuality and intimacy play in young survivors’ lives? What are some of the effects of cancer treatment and how does it affect quality of life in relation to this aspect of their lives?

Sexuality and intimacy are often hugely important parts of adult romantic relationships. Studies show that sexual satisfaction is strongly tied to overall intimate relationship quality and satisfaction for both men and women. So the ability to have a satisfying intimate life is integral to relationship functioning.

Remember, sexual interest varies from person to person and couple to couple, so it’s not about living up to some ideal, but about finding a level of sexual connection that works for you. In addition, sexuality is a key component of self-concept for many people, and a source of pleasure and connection in life.

What are some of your tips to resolve the issues? What can women do to improve their sexual functioning after breast cancer?

Breast cancer affects multiple domains of sex and intimacy. There can be physical, emotional, psychological and relational aspects of these effects. For example, a woman might have physical issues such as pain with intercourse and low desire, but she may also experience emotional issues such as sadness or embarrassment, and relational issues such as difficulty communicating with a partner about her intimacy concerns. Each of these domains deserves attention.

Here are some specific tips for addressing concerns in each domain:


Be as good to yourself as possible. Eat well, sleep and exercise to help with energy, mood and coping.

Find sexual and intimate activities that are comfortable and pleasurable for you right now. Expand your definition of what intimacy is – it doesn’t have to include intercourse or orgasms; maybe it’s more like spooning or massages or whatever else you find comfortable and connecting.

If you have specific physical symptoms like pain or dryness, talk to your doctor about what you can do to address them.

If you have low desire for sex, consider “starting from neutral” with an activity you’ve identified that you might like and see how it feels. You may not need to have desire before you start.


Explore and process your emotions – using journaling, mindfulness, talking to supportive friends, family or professionals – rather than suppressing them or brushing them aside.


Become aware of unkind or unhelpful thoughts and beliefs about yourself and work to change them. For example, “I’ll never feel sexy again” is not helpful and likely not true. A more helpful thought might be “I don’t feel sexy now, but with time and trying a few things, I intend to get back to feeling sexy when I want to.”


Communicate. Talk to your partner about your feelings and listen to your partner’s input as well. Breast cancer is a lot to process and you may need to have ongoing conversations about it.

If there are difficult topics that you want to talk about with a partner, it can be helpful to write down what you want to say in advance to help clarify your thoughts.

Use “I” statements to express your feelings. For example, “I feel upset when you want sex and I don’t,” rather than, “You make me upset when you pressure me to have sex.”

About Erica Marchand, PhD

Dr. Marchand is a licensed psychologist specializing in sexual and relationship concerns. She earned her Ph.D. in Counseling Psychology from the University of Oregon, and arrived in sunny Los Angeles in 2010 for postdoctoral training at UCLA. Dr. Marchand has conducted research in the areas of family influences on sexual behavior and sexual adjustment after cancer. She helped to develop and deliver a workshop called Life after Breast Cancer in her role as Project Scientist at UCLA. She’s also currently co-authoring a book chapter called ‘Sex and Cancer’ in the Textbook of Clinical Sexual Medicine, due out next year.


Erica Marchand will explore how to come to terms with your new normal after a breast cancer diagnosis.

Come meet Dr. Marchand at the first YSC West Regional Symposium in Long Beach, CA! She’ll be leading a session called Relationships and Intimacy: Your Body Now. Dr. Marchand will discuss how to see and embrace the strength and beauty of your body now and in the future.

Early bird tickets for the Symposium are only $30 through Thursday 9/22. Don’t miss out on an incredible day of learning, networking and fun. Learn more here.

Tickets include breakfast, lunch, dinner and evening dance party.




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