MBCN Supports Metastatic Breast Cancer Researchers at University of Chicago With Leadership Awards

November 12, 2015
MBCN's Shirley Mertz (left) and Katherine O'Brien (far right) with leadership award recipients Dr. Nanda and Dr. Chmura.

MBCN’s Shirley Mertz (left) and Katherine O’Brien (far right) with leadership award recipients Dr. Nanda and Dr. Chmura.

At a Metastatic Breast Cancer Forum held by the University of Chicago Medicine Comprehensive Cancer Center on October 27, 2015,  patients and caregivers heard from two University of Chicago clinicians, oncologist Dr. Rita Nanda and radiation oncologist Dr. Steven Chmura, who shared current and new approaches aimed at improving treatment outcomes for women who live with metastatic breast cancer, a currently incurable, but treatable form of breast cancer that ends the lives of 110 people every day and 40,000 lives annually in the United States.

At the conclusion of the presentations, Shirley Mertz, a metastatic breast cancer patient, and President of the Metastatic Breast Cancer Network (MBCN), an all-volunteer, non-profit, nationwide patient-led organization, noted that although metastatic breast cancer is responsible for virtually all breast cancer deaths, a recent analysis revealed that only seven percent of all government and privately funded grants from 2000-2013 focused on improving outcomes for those living with metastatic breast cancer. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally. “We know research holds the key to changing those statistics,” said Mertz.

Mertz then announced that MBCN wants to support the ongoing research of Dr. Rita Nanda and Dr. Steven Chmura by presenting an  MBCN Research Leadership Award to each in the amount of $30,000. Mertz said that the awards are made possible from contributions sent to MBCN from individuals, families and work colleagues who want to honor or remember loved ones, colleagues, and friends with metastatic breast cancer.

Mertz noted that Dr. Nanda’s research has been directed toward the treatment of triple-negative metastatic breast cancer. She has sought to identify novel anti-tumor treatments, such as using the drug pembrolizumab, to activate the body’s immune system in these patients. Immunotherapy has been shown to improve patient outcomes in advanced lung cancer and advanced melanoma, and Dr. Nanda’s research advances knowledge about using immunotherapy in metastatic breast cancer. (Here’s Dr. Nanda’s triple negative presentation from MBCN’s 2012 national conference.)

Dr. Steven Chmura is leading a national team of radiation oncologists in a national Phase II/III open trial that randomizes breast cancer patients with only 1-2 metastases, called oligometastatic breast cancer, to compare survival outcomes in standard of care therapy with or without stereotactic body radiotherapy (SBRT) and/or surgical ablation. Mertz said the Research Leadership Award from MBCN insures that participating study sites can perform needed biomarker tests of study participants. Outcomes of the trial could impact how metastatic disease is treated in the future in a subset of patients. (Here is a copy of Dr. Chmura’s presentation: Chmura talk_10_27_15. For an overview of Dr. Chmura’s work, see this video from MBCN’s 2012 National Conference.)


The Metastatic Breast Cancer Network, a national, not-for-profit organization, was founded in 2004 to raise awareness about the kind of breast cancer that is rarely discussed in the breast cancer support groups or the media—metastatic breast cancer. Unlike early stage breast cancer, in which cancer cells are confined to the breast, in metastatic breast cancer, cancer cells have traveled from the breast to other sites in the body. Led by patient advocates, MBCN has worked to offer education and information to patients and their caregivers through its website (mbcn.org); targeted brochures developed for the public and those newly diagnosed; and an annual conference for metastatic patients at major comprehensive cancer centers.

Sherri Shares: My First Visit From Hospice

August 13, 2015

See sherrifillipo.com

“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog.  Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. Sherri has done several guest posts (The Conversation, When a Nurse Becomes a Patient, Why Does My Oncologist Always Ask Me How I am Feeling and Improving Your Cancer Patient Experience). Sherri recently entered hospice–we have found her blogs very informative and hope you will, too. Here’s Sherri’s account of her first hospice visit. 

My hospice nurse,  Melissa, recently made her first visit. I fretted about the apartment, plumping pillows, dusting counters like I was having a dinner party. I don’t know why. I guess of all the people I have ever had come to my home in the past 55 years, hospice has not been one of them!

We ended up spending two hours together and I am not sure why except I had a million questions that I wanted answered,  more from a curious nursing perspective than patient. At one point, she looked at me and said, “Most people don’t want nearly this much information this soon!” I told her I did. This is an area of nursing/healthcare that is a total mystery to me and I was determined to draw back the curtain and get some answers by dern!

Truly, it was what I would call an intake assessment. Basic demographic information from me, though we did tip toe around delicate issues of death (Did I have a ‘Do Not Resuscitate’ Order? Do I have a healthcare proxy?). I believe she would go as far as her patient would let her. Some of the things I wanted to know included:

  1. Can you use my port for medication? No, they do not use the port. They will provide medication by mouth until the swallowing reflex is gone and then they transfer to a liquid mixture that they say works well when given via a syringe (no needle on the syringe) into the back of the throat that slides down and does the trick.
  2. Will there be morphine in the home (the nurse in me goes, “WHAT?”) and the answer is yes.
  3. I asked her if my neighbor could administer it and the hospice nurse said she could. Then I shouted over my terrace to where my neighbor was sitting on her terrace and asked her if she would like to give me morphine when the time comes and of course she said, “I would love to but only if you will share! You know those old Bianca commercials where they spritz a little mouth freshener into their mouths?” She said she would just take a little. NO, she is not serious. She just knows how to make me laugh in tense situations.

Things I learned:

  • Patients are placed on teams of which there is a nurse, social worker, spiritual liaison and host of others. There is a weekly interdisciplinary team meeting where you are the center of attention and the team discusses how you are doing, they review the meds you are on etc. I LOVE this idea. We do it in the hospital but not nearly enough. Everyone is together and everyone is looking at you from their professional perspective. Think holistic.
  • Everything is conducted here in the home which I mentioned yesterday.
  • When I begin to have difficulty with activities of daily living, there is an LPN who can come to the home an hour a week and assist with bathing, etc.
  • Physical therapy is a benefit (I am working on some way to get a massage out of this but I can’t quite figure how to word my need for one to make it sound medical!)
  • As a nurse I am used to the question (ten thousand times over), “One a scale from 1-10, how would you rate your pain?” Hospice has a different question which she said would be asked every time and it went something like this, “What is the one thing today that is most on your mind?”

All in all an oddly pleasant afternoon with this benevolent stranger. Next up, the social worker comes in on Monday. Stay tuned. All is well. Cats are curled up. The sun is shining. The temps are cool. I am drinking coffee.

Follow Sherri’s story at http://www.sherrifillipo.com

MBCN’s Scan, Treat, Repeat T-Shirts Now On Sale

July 30, 2015
Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt; allow extra time for processing and delivery

Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt ; allow extra time for processing and delivery

If you’ve attended a recent MBCN conference, you’ve seen our “Scan, Treat, Repeat” tshirts. We are happy our shirts have been a hit! In fact they’ve been so popular, we’ve struggled to keep up with the demand.

Good news!  We are offering shirt for sale again via Booster.com. Our shirts can be ordered at http://www.booster.com/mbcnscantreatrepeattshirt for $15.

Because it isn’t feasible to screen print tshirts on demand, the tshirt vendor doesn’t print the shirts until all orders are received. The shirt company requires site users to run campaigns that are generally three to four weeks long. So, shirts can be ordered up until August15, 2015. It will then take about two weeks for the vendor to print and deliver the shirts.

In  addition to printing and shipping costs, Booster.com collects a percentage of each sale. We wanted to make our shirts as affordable as possible. The lowest price allowed at Booster.com is $15.

Now  is the time to order your shirt for September or October!

We know that hundreds of you already have our shirts. But who wore it best? Share your best Scan, Treat, Repeat tshirt pictures on MBCN’s Facebook page or email them to us at mbcntshirts@gmail.com.


Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN's shirt last Oct. 13 in Chicago.

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN’s shirt last Oct. 13 in Chicago.


MBCN Responds: Metastatic Recurrence Rate Statistics

July 26, 2015

Editor’s note: Blogger Ann Silberman has asked that we link to the blog in question. We have added her name and said link.

Recently,  metastatic breast cancer blogger Ann Silberman questioned some frequently cited statistics concerning the number of people treated for early stage breast cancer who go on to have a metastatic recurrence. The blogger suggested that the Metastatic Breast Cancer Network (MBCN) was the source for a Facebook graphic which decries the number of early stage breast cancer patients who go on to have a metastatic recurrence. MBCN is not the source for this artwork–the graphic’s creator has indicated she corresponded with another breast cancer organization to arrive at the stated number.

MBCN also would like to note the discrepancy between the blogger’s account of the given statistic and what the MBCN site actually says. Please note that the statement on our website is carefully worded. It says: “It is estimated that 20 to 30% of all breast cancer cases will become metastatic.”  Here is a screenshot of the MBCN webpage:


Why Does MBCN Have This Statement on its Website?

The numbers were cited by an oncologist who treats and does research on behalf of metastatic breast cancer patients. More significantly, it highlights a critically important issue: Despite excellent standard of care for people with early stage patients, some patients go on to receive a metastatic diagnosis 5, 10, 15 and even  20 years later. Scientists do not know why this happens–and unfortunately, there is no cure for metastatic breast cancer.

Why Is the Recurrence Rate So Important?

We need the public and early stage patients to support metastatic research because no one can be told with absolute confidence that they are cured after treatment for early stage breast cancer. Note this 2011 presentation:

Why Is is it So Difficult to Find MBC Reccurence Rates?

Oncologists and researchers often refer to the heterogeneity of breast cancer, meaning it isn’t one disease. Triple-negative subtype, for example generally have a higher metastatic recurrence risk vs. the hormone-positive disease. Tumor size and node involvement also can play a role in an individual’s risk for recurrence. The more conservative 20-30% figure MBCN uses is an aggregate number that includes Stages I-III, with much lower percentages for Stage I.

Another reason for the scarcity of statistics is that patients with recurrences are not counted.
  • NCI and SEER databases record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
  • We estimate that there are 150,000 US people currently living with metastatic breast cancer, but we don’t know exact numbers.
  • We know for sure that almost 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die. (Here is a general explanation of how cancer registries work. And here is an overview of some epidemiology basics.)

What Is MBCN Doing to Ensure People with MBC are Counted?

MBCN is a founding member of the Metastatic Breast Cancer Alliance which is currently collaborating with other agencies and registries to initiate a epidemiology pilot study designed to achieve more accurate data about the prevalance and disease course of MBC. On August 11, 2015, the Alliance will offer a free webinar to provide an update on its activities.

Is This Statistic Too High or Too Low?
We don’t know– and frankly no one does. As noted above,  there are currently massive gaps in how people with metastatic breast cancer are counted.  But there are certainly some who feel strongly the number is lower rather than higher.  The following is from ACS Breast Cancer Facts and Figures 2013-14

Breast Cancer Survival and Stage at Diagnosis
 Relative survival rates are an estimate of the number of patients who will survive for a given time after a cancer diagnosis.  It differs from observed survival in that it accounts for deaths from other causes by comparing among cancer patient to survival among people of the same age and race who have not been diagnosed with cancer.  
 Based on the most recent data, relative survival rates for women diagnosed with breast cancer are:
  •  89% at 5 years after diagnosis
  • 83% after 10 years
  • 78% after 15 years

“Of course, women keep dying of MBC longer than 15 years after their initial diagnoses,” notes Musa Mayer, patient advocate and Member, Steering (Executive) Committee, Metastatic Breast Cancer Alliance. “According to SEER statistics:  18 year relative survival for patients diagnosed from 1990-1994 is 71% which takes us really close to the 30% figure.  However, it’s important to bear in mind that none of these patients would have been offered Herceptin, not even in the metastatic setting.  With adjuvant Herceptin cutting recurrence rates in half, this is a big difference.  Fewer hormonal options existed as well.”

Unfortunately, Herceptin is not an option for all breast cancer patients. HER2 positive breast cancer--i.e., the subtype Herceptin targets–accounts for about 15 to 20 percent of all breast cancers;  ER/PR+; HER2-  is the most common subtype, accounting for 65% of breast cancer cases;  the triple negative subtype accounts for 15% of breast cancer cases.
ACSdeathsWhat About Mortality Rates?
Some argue that mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like relative survival for early stage breast cancer is 89 percent.  Yet an estimated 40,000 US people die annually from metastatic breast cancer.
Earlier this year, Dr. Aaron E. Carroll wrote a New York Times article called “Why Survival Rate Is Not the Best Way to Judge Cancer Spending.” His explanation of over diagnosis bias is compelling:

Let’s say that a certain number of cases of [mythical]  thumb cancer that are detectable by scan never progress to a lump. That means some subclinical cases that would never lead to death are now being counted as diagnoses.

Since they were never dangerous, and we’re now picking them up by scans, they’re improving our survival rates. But they do nothing for mortality rates because no fewer people are dying. . . For many cancers, we’ve been diagnosing significantly more cases, but making little headway in mortality rates.

What’s Next?

MBCN prides itself on being a credible source of information for the metastatic breast cancer community. Unfortunately even the most well-meaning individual can misinterpret and/or  misattribute statistics. We do our best to present accurate information–we ask others to do likewise.
We understand the keen interest in recurrence statistics. We are doing a literature search and will report those findings shortly–but we expect those findings will closely track with all that we have said here.
We are working to change how metastatic breast cancer recurrences are tracked. But in 2015 this information remains undocumented. On the positive side, there have been some advances in the adjuvant treatment of early breast cancer over the past decade. This includes the use of adjuvant Herceptin, the use of adjuvant taxanes with AC regimens in triple-negative breast cancers and some incremental improvements in  hormonal treatment. And yet we still lose 110 US people to metastatic breast cancer every day. Clearly much work remains to be done.
Finally, we urge people not to apply  population-based statistics to their individual cases–we are each statistics of one!

Barbara: Learning How to Accept and Live with the Unacceptable

June 24, 2015

In 2002, Barbara Bigelow was diagnosed with Stage II breast cancer. She was 44 years old and had a strong family history: Her two older sisters also had been diagnosed with breast cancer.

Barbara spent 2002 in treatment: She had a lumpectomy, sentinel node biopsy, ancillary node dissection, chemotherapy with AC for 6 rounds and 7 weeks of radiation. Shortly after Barb finished treatment, her sister Mary died–just  six weeks after Mary’s metastatic breast cancer recurrence was discovered.

Barbara’s cancer diagnosis coupled with Mary’s Stage IV experience prompted Barbara to take an aggressive approach to her treatment.  She  had her ovaries and fallopian tubes removed as well as a bilateral mastectomy with DIEP reconstruction. The latter  was major surgery–a 16-hour procedure to remove both breasts and transplant abdominal fat to create new breasts. Revision surgery to create “nipples”  followed three months later as did  yet another surgery and tattooing. 

Barbara then took an aromatease inhibitor (AI) for 10 years as her doctor recommended. She had been off the AI for two years when she learned her cancer had returned.  Here’s Barbara’s story in her own words.


Barbara Bigelow learned she had metastatic breast cancer in March 2015.

I have been married to the love of my life, Tim, for almost 32 years and we have two beautiful daughters, Kelsey (25) and Bridget (24). We live in the Boston area.

I must admit that when I hit the ten-year post-diagnosis mark, I felt  distanced and more detached from the breast cancer community–I sort of put it behind me although the threat was always there, lurking in my head. It never completely goes away and my doctor never told me I was cured.

I woke up March 11, 2015 in a pile of rubble. This time my treatment team had shrunk to my elderly oncologist and his NP. Gone is the cavalry, leaving me standing alone as a treatment failure. I feel like I have somehow pissed my doc off for not staying in remission. This is compounded by the very real and very sad realization that women with recurrence like me are not a priority. We are no longer curable, people whose  pink ribbon flying days are behind them. Too dark? Yup, I get it.

Given my family history, some people have wondered if I am a carrier for the BRCA-1 or BRCA-2 mutations. I’m not–and neither are my sisters.

Others are curious how can I have breast cancer even though I no longer have “real” breasts. Good question!

Cancer is an unforgiving master that can travel, hide and mutate as it finds somewhere else in the body to take up shop–in the same spot as before, in the tissue next to the original spot, or in my case, a distant location.  BC commonly metastasizes to the bone, liver, lung and/or brain.

I must be special–my cancer  decided to pitch its tent under my right kidney, marshal and enlarge the troops until it was ready to take the hill in the form of a tumor.  I have a 3 cm solid mass in the retroperitoneum obstructing the right kidney which is now non-functioning—there is no hope of any appreciable recovery of renal functioning in that kidney. My left kidney is doing all the work.

My metastatic breast cancer diagnosis came as quite a surprise…it followed an MRI for back pain due to my spinal stenosis. If I hadn’t had that MRI, I would never have learned about the mets.

My pathology report confirmed this isn’t a new primary cancer–this is the same breast cancer subtype I had with my first diagnosis. When cancer spreads beyond the breast it is treatable but no longer curable.  I am not going to win this fight, but hopefully I will respond to treatment and win a few battles and skirmishes. I will try different treatments until the cancer figures out how to outsmart it and becomes resistant–then it’s on to another treatment–hopefully my cancer can be controlled for some good long stretches.

This time, I am blogging my experiences.  Why am I doing this? Thirteen years ago, blogging was not yet a thing and we had to e-mail interested people and it was hard. Now I can blog and create a permanent record for my kids. At this point it is easier for me to write my thoughts than it is to read a book–my concentration is shot and blogging helps me process and organize my thoughts.

As for my family– People ask me how they are doing—don’t ask me, ask them, I can’t presume to speak for them and no one really wants to hear what two sisters whisper to each other when they climb into bed together to watch TV or my husband’s anguish at a 3:00 AM panic attack. Yeah, there is that–I am composed on the outside by nature and profession but on the inside I am as dazed, confused and panicked as the next person. Anxiety has lived in me for 13 years and isn’t leaving any time soon.

I have been in denial about my cancer re-occurrence. I have buried my head in the sand, looked for every distraction and pretended it was an epic joke that the universe was playing out.

How could this really be happening to me? I can talk about it, discuss it in-depth even, but I really haven’t slowed down enough to actually feel it. It has been a lot easier to think about and question the quality of care I have been receiving from my grumpy elderly doctor than to look at myself. To get unstuck. To move forward. To feel.

The call  came at the right moment if there ever is a right moment in the cancer universe. Time for a second opinion and a new attitude. The woman on the other end of the receiver said,  “This is where you need to be, we don’t do anything but cancer and it’s a whole different ball game here.” I needed to hear that.  It’s been lonely here in the dark, not feeling like a medical team was on the case, looking out for me.

It’s hard– to transition away from the people and place that have taken care of me for so long and take the giant leap into the unknown. It just means a lot of anxiety all around even though I know intellectually this is right. It is, for me, life or death. I have to pick up my sticks, buckle in and launch into my future, whatever that is.

First we muddled our way through my former treatment center to pick up the CDs of all my scans, head to Dana Farber registration and sign many forms including my health proxy—good luck Tim, I wish you the best on that.

My new doctor is lovely. Soothing, reassuring and most of all, positive. She rubbed my back, touched my hand, listened hard, answered all our questions and for the first time, we both felt a sense of hopefulness and optimism. This is where I need to be.

She said she hoped for a long and winding road with me–of course there will be bumps but hopefully I won’t fall off a sharp corner. She wrote blood work orders, took me on as “hers”, promised to do her homework–getting my actual tissue samples from my prior oncologist. She spent a lot of time with us. It was good. Treatment stays the same for now–Pablocyclib and Letrozole. Blood counts headed south but not bad yet.

My new doctor has renewed my hope that there is a space between my present and my future–time to breathe, catch up, and get organized. Despite only 7% of money raised for breast cancer research being spent on MBC and no change in the MBC stats in 20 years, I still don’t think it’s over. For me.

I am only on my first treatment. And, now that I am well into my 3rd cycle of chemo, I feel pretty good. Actually I feel more like myself than I have since February. I’ll take it! I do not plan on going anywhere without a battle and I am determined to drag myself through the door to my future.

I will have a PET scan at the end of June. Will it be a big day? Yes, but I believe in my oncologist and the chemotherapy drugs and mostly, I believe in me.

Why is it so much harder this time? Last time around I was 13 years younger and did not yet have arthritis and spinal stenosis and menopause to get through. I had young kids that needed attention. My parents were still here and they were two more anchors to help me to get on with, and over it.

Even though I was told many times that my cancer was incurable I didn’t believe them. I felt good. I thought I beat the odds. I was going to be a bad ass Melissa Ethridge, guitar blazing, kicking its butt. Turns out not so much. So yes, I am still here trying to learn how to accept and live with the unacceptable.

However, I feel great today, the weather is perfect, and Tim is puttering around, fixing things, mumbling to himself, life is good. We are all blessed and the tender mercies are present and surround me everywhere.

Lastly, when Bridget first heard that cancer might be reappearing in our lives, her response: “Please, no more lasagna, mom, I can’t take it,” in reference to the universal food of love that so many kind and thoughtful people brought us the first time we went through this. This is what grounds me and keeps it real.


You can follow Barbara’s story at barbigwire.com.

Sandra’s Story: Living With Metastatic Breast Cancer for 17 Years

June 11, 2015
Editor’s Note: Sandra’s remarkable story started two decades ago. She was 42 when diagnosed with Stage 2,  triple-negative breast cancer. Three years later, when the cancer appeared in her bones, it had changed to ER+, HER2-. Later when she had a new tumor in same breast it changed to ER+ and HER2+. Whew! Today, Sandra is 62 years old and  a tireless advocate for people living with MBC.  We love her story and we think you will, too!

Sandra with a kitty from the animal shelter she volunteers at every week.

I’ve been living with Stage 4 breast cancer since 1998.  It took an agonizing three months to confirm the diagnosis with a biopsy and I got the news the day before I hosted Thanksgiving Dinner at my home for 18 family members.  That Thanksgiving was like a Three Stooges movie.  I told my mom about my diagnosis when we were alone, then my middle sister came in and wanted to know what was going on, followed by my eldest sister.  When we opened the door to come out, the entire family just froze.  My niece spilled red wine on my newly installed cream carpet and I totally forgot to make mashed potatoes.

I was 42 years old when I was first diagnosed with breast cancer.  With my original diagnosis of triple-negative breast cancer, the pathology of my tumor mirrored that of my mother’s who was diagnosed 18 years prior.  She had surgery and radiation.  I decided to go for chemotherapy as well, fully expecting to have the same results as my mother.

Unfortunately, three years later at the age of 45, my cancer metastasized.

My son was away at college and didn’t come to our Thanksgiving Dinner that year.  My mother and I drove 1,000 miles north to see him so we could drop off his car.  When I told him about my diagnosis, he was mortified.  I was ready for that.  I said “It’s your job to graduate and it’s my job to get better.”  He graduated and I am still alive, riding the mets roller coaster for nearly two decades.

I continued to work the first 10 years after Stage 4 diagnosis and got involved in my local Y-Me chapter along with the 3-Day Breast Cancer walk.  I believe the exercise from training for the 3-Day walk helped me stay strong for the therapies ahead of me and may have even extended my life, as did the support of my parents, my husband and my other family members.

My daughter turned 13 the day of my original surgery.  One night, as I was tucking her into bed, she said “Mom, I know you have breast cancer and so did Granny.  I know that I’ll get it too, and I want you to know that I’m OK with that.”  Although a sweet sentiment on the surface, this motivated me to want to do something to stop the disease so that her generation wouldn’t have to worry about ever dying from it.

My interest in the science of breast cancer and advocacy brought me to many National Breast Cancer Coalition conferences and Project LEAD.  I have participated in nearly two dozen breast cancer research review panels, sitting right next to researchers, statisticians, clinicians and epidemiologists, giving them the message that Stage 4 needs more attention and funding.

I’ve been involved with the Y-Me Helpline and then became a peer counselor for After Breast Cancer Diagnosis and Living Beyond Breast Cancer.  When others ask me what treatments I’ve been on, it’s hard to remember them all.  Some of them aren’t being used any more, like high dose chemotherapy followed by stem cell rescue.  Luckily I haven’t exhausted all of my treatment options and I continue to try to stay as healthy as I can so my body is able to withstand what treatments may come my way.

You can read more stories like Sandra’s here.

Metastatic Breast Cancer Mom Is Making A Difference With This Viral Video

June 8, 2015

Holley Kitchen’s viral video tells her metastatic breast cancer story…and is educating millions of people around the world about Stage IV breast cancer. Since being posted on June 5, the video has gotten more than 10 million views and 400,000 shares. You can watch it on YouTube here.

Holley's metastatic breast cancer video has been seen by millions.

Holley’s metastatic breast cancer video has been seen by millions.

Holley lives in Cedar Park, Texas. She told her story to KVUE’s Terri Gruca. “Holley was diagnosed with stage 3 breast cancer at age 39,” Gruca told viewers. “After a double mastectomy, chemo and radiation she thought she was cancer free. A year later she found out it had spread to her spine and bones.”

“I think it resonates with people because it’s honest,” Holley told the reporter. ” It’s what people don’t want to say and what people don’t want to hear,” she said.

We love Holley’s sense of humor and how she personalized her story. She’s also self-deprecating–she stresses that she’s not trying to make people feel bad–her mission is education. Like so many of us, Holley didn’t know what metastatic breast cancer was or how people got it until her own diagnosis.

Holley’s video shows what one person can do. Holley did a great job of educating herself about metastatic breast cancer. She is obviously very familiar with “The 13 Facts Everyone Should Know About Metastatic Breast Cancer.” Thank you,  Holley,  for the shout out to MBCN.org at the very end of the video!

We also love Holley’s term for someone living with metastatic breast cancer: #lifer. You can find Holley’s group” Facebook page here.


….and now BuzzFeed has picked up Holley’s story: http://www.buzzfeed.com/juliegerstein/this-womans-breast-cancer-journey-will-leave-you-speechless


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