Metastatic Breast Cancer at ASCO 2014: We Are There

katherinembc:

#ASCO2014 can be overwhelming but it is wonderful to be here.

Originally posted on MBCNbuzz:

Follow ASCO live via TwitterShirley Mertz, Ginny Knackmuhs and I are am among the 25,000 attendees at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting this weekend at McCormick Place in Chicago. We are there as a patient advocates with the Metastatic Breast Cancer Network.

ASCO isn’t just about breast cancer. There are sessions on gastrointestinal cancer, genitourinary cancer, head and neck cancer, lung cancer, leukemia, lymphoma and myeloma, melanoma and more. If oncologists put together Lolapalooza, this is what it would look like.

Prior to attending ASCO, I never gave any thought to the group’s name. I thought it was something between a service-type organization (like the American Legion) or an elite group of super smart people (like the National Honor Society). But in learning more about ASCO’s 50-year history, I have come to appreciate just how important the “Clinical” part of its name is.  As the the ASCO Daily…

View original 235 more words

Where’s my clinical trial?

katherinembc:

Ginny Knackmuhs is fortunate: she has been living with triple negative breast cancer for five years. She’s very glad her disease has been quiet–she’s happy to be stable. But why aren’t we learning from people like her?
“Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? asks Ginny. “Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.”

Originally posted on MBCNbuzz:

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting…

View original 390 more words

Metastatic Breast Cancer Makes Mother’s Day Difficult

I just finished reading “The Day I Started Lying to Ruth: A Cancer Doctor on Losing His Wife to Cancer.”   The author, Peter Bach, is a physician, epidemiologist and writer at Memorial Sloan-Kettering Cancer Center where he is Director of the Center for Health Policy and Outcome. He is a gifted communicator and this is a compelling–if sad and sobering–essay.

 

PeterBach

I was shocked and dismayed to learn that Dr. Bach’s wife, Ruth, died in January 2012 from metastatic breast cancer. She was 46.

I recalled the Bachs from a 2011 series of blog posts in the New York Times. The seven-part series started with “When the Doctor’s Wife Has Cancer” in February 2011 and concluded with April 2011′s “Back to Work and Life With a Fresh Perpective.”  In the April 2011 installment, all seemed well–Ruth’s hair had grown back following the conclusion of her chemo. The piece ends with the couple enjoying a gorgeous day at the beach with their son, a happy ending to what had been a frightening chapter in their lives.

So how could this woman possibly have died a mere nine months later?  Bach did not assign a time frame to his New York Times 2011 series–as many readers probably did, I assumed Bach was writing about events in real time, but that wasn’t the case. In his most recent article, we learn that Ruth was first diagnosed with breast cancer in 2008.  So the New York Time series actually described events from three years prior.

Still, even with this timeline clarification, the news is no less incomprehensible. In June 2011, just a few a months after the publication of the NYT series–and three years from her first diagnosis–the Bachs learned Ruth had a metastatic recurrence. She died eight months later in January 2012.

Bach’s thoughtful NYT series included this March 2011 reflection on the risk of breast cancer recurrence. A mere three months after that story was printed, he and Ruth learned her cancer was back (after three years), and this time it was incurable.

How awful for all concerned.

When I read Dr. Bach’s account of his wife’s experience with metastatic breast cancer, I felt a familiar blend of emotions: sympathy for Bach and his young son, anger that yet another young life was lost  and despair that even people as smart and well-connected as the Bachs were powerless against this insidious disease.

Mother’s Day is this Sunday, May 11, 2014. It will be hard day for the Bach family as well as the families of  some of their fellow Memorial Sloan-Kettering patients who lost  young mothers to metastatic breast cancer, including two who shared their diagnosis online and in print:

Meredith Israel, mother of a five-year-old died on December 23, 2012 at age 39.

Elisa Bond, also 39,  died on March 26. 2014, a few weeks prior to her daughter’s fourth birthday.

The following women were not MSKC patients and not all of them were mothers. But  they were all too young:

Lisa Lynch was 33.

Olga Simkin was 34.

Maria Madden was 37.

Jennifer Lynne Strutzel Berg was 37.

Susan Niebur was 39.

Beth Bell was 40.

Samantha Pritchett was 40.

Dana Robinson was 41.

Rachel Cheetham Moro was 42.

Zoh Vivian Murphy was 45.

Barbra Watson-Riley was 45.

Acacia Warwick was 46

Suzanne Hebert was 47.

Mary J. Corey was 49.

Shelli Gibbons was 49

Martha Rall was 49.

 

“We need focused research to change incurable metastatic breast cancer into a treatable, chronic condition like HIV-AIDS–where patients can now live for 20-30 years with treatment after their diagnosis,” says Shirley Mertz, President of MBCN. “If gay men, who were then scorned by society in the 1980s, could demand and receive focused research and treatments for their disease, why can’t we women–who are wives, mothers, daughters, sisters and grandmothers AND over half of the population–receive similar research that will find strategies to keep us alive for 20-30 years?

“Are we not worthy of this effort?  Are we ignored because we quietly live with our disease?”

Well, are we?

 

 

Tagged , , , ,

Canadians Push for National Metastatic Breast Cancer Day Designation

katherinembc:

Kudos to patient advocate Laurie Kingston and our friends at the Canadian Breast Cancer Network!

Originally posted on MBCNbuzz:

LaurieKingston

We want to salute Laurie Kinsgston, a Canadian metastatic breast cancer patient advocate and author, for her work with  the Canadian Breast Cancer Network. On May 1, 2014,  Laurie and representatives from the Canadian Breast Cancer Network joined Liberal MP Hedy Fry to call attention to her private members’ bill to designate October 13th as National Metastatic Breast Cancer Day.

Laurie, who lives in Ottawa, learned  was first diagnosed in  breast cancer in 2006, when she was 38 years old, with two little kids. Three months after she completed treatment, she learned the cancer had spread to her liver. Treatment went well–seven months later, her  scans revealed no evidence of disease.  But in November 2012, she was diagnosed with brain mets.

“After conventional and cyber knife surgeries, I was once again able to embrace the words ‘no evidence of disease,’” she writes. “I will be in treatment for…

View original 186 more words

Tests and Metastatic Breast Cancer: Living With Uncertainty

 

Click here to watch the video

Click here to watch the video

I just had my scans and I am glad to say I am stable.

But it made me think about how anxiety producing this is…and that most people don’t understand why we are having scans, how often we have them and why this is so emotionally draining. I made an attempt to explain it here: http://animoto.com/play/SSeFswBYB5dxZA401GWcEw

 

Credits: Ryan Shaw, currently portraying Stevie Wonder in the Motown Musical, is the
“Morning, Noon and Night” singer: http://www.amazon.com/Real-Love-Ryan-Shaw/dp/B007N8QAV0/ref=pd_sim_sbs_m_1?ie=UTF8&refRID=18FVAZRWYFWBCXMS5C6Y

….and Roger Hargreaves is the ” Mr. Men” artist and writer: http://en.wikipedia.org/wiki/Mr._Men

You can learn more about PET and CT scans here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1255942/

…and here are some bone scan basics: http://www.insideradiology.com.au/pages/view.php?T_id=25#.U2MUn1feTng

Tagged , , ,

There Are Some Second Acts in American Lives…for Bill Keller, Anyhow

new-job-congratulations-card

 

If I had LinkedIn ties to Emma and Bill Keller, I’d be sending them each congratulatory notes. Bill is now the  editor-in-chief of the Marshall Project, a start-up operation that will specialize in criminal-justice reporting. Emma, having tendered her resignation to The Guardian, has moved on to “several reporting and writing projects.”

Earlier this year, Emma Keller, writing online for the Guardian, questioned Lisa Bonchek Adams’ use of social media to publicly chronicle her  treatment for metastatic breast cancer. (The piece was subsequently withdrawn.)  Bill Keller’s NYT Op-Ed ran less than a week later and essentially portrayed Adams as a dying woman grasping at straws, suggesting her treatment equates to “endless ‘heroic measures’ that may or may not prolong life but assure the final days are clamorous, tense and painful.”

Neither  Keller apparently felt compelled to apologize or admit any culpability. They’ve both moved on to other things–“I found that I was lying awake at night thinking about how I could do this,” [Bill]  Keller said. “You always like to think that you have one or two more acts left in your life.”

When I consider the 65-year-old Keller’s decision to prolong his  career, I recall my own father’s decision to slip peacefully into retirement at age 63. Dad’s subsequent move to Florida  seemed to me a humane and honorable alternative to the frantic scramble to remain relevant and further burnish one’s professional accomplishments, activities that so often makes a misery of Monday through Friday for the cube dwellers who must support us in our dotage. . .

 

Tagged , ,

I Was Not Just ‘Another Person’ With Metastatic Breast Cancer

katherinembc:

LBBC volunteer and MBC patient Caryn Kaplan shares her story of attending the group’s metastatic conference for the first time.

Originally posted on LBBC's Blog:

Caryn KaplanLast week we introduced new blogger but long-time LBBC friend and volunteer, Caryn Kaplan. In her first story she explained that her cancer had spread to her liver and bones and that she was diagnosed with breast cancer for a third time, this time with metastatic disease. Caryn has attended our Annual Conference for Women Living With Metastatic Breast Cancer for the past few years and here she shares her memories of that very first time…

As I started my drive down Interstate 95 towards downtown Philadelphia, listening to intently to my audio book, I found that my mind had drifted off the story and to a place that has a story of its own.  I was going to attend my first Women Living with Metastatic Breast Cancer Conference held by Living Beyond Breast Cancer.  I read about it on their website and received publications in the mail and to me-it was a…

View original 934 more words

Grants Still Available for April 26-27 LBBC Metastatic Conference in Philly

LBBC Wants You!

LBBC Wants You!

 

Our friends at LBBC have asked us to remind you there’s still time to sign up for their conference.

Travel grants and fee waivers are available for LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer on April 26th & 27th at the
Philadelphia Marriott West!

  • Hear the latest updates from some of the country’s leading healthcare experts on advances in care, symptom management, quality-of-life concerns and new clinical trials and their potential impact on emerging treatments
  • Attend workshops designed for the newly-diagnosed, women living long-term with metastatic breast cancer, triple-negative and hormone receptor-positive diagnoses types, young women and caregivers
  • Network with peers, listen to their experiences and share your own
  • Get your questions answered by experts
  • Visit with exhibitors
  • Participate in healthy living activities (including an all-levels yoga class!)
  • More info here: http://www.lbbc.org/Events/Metastatic-Breast-Cancer-Conference/2014-04-26-Metastatic-Breast-Cancer-Conference

I can’t make this one, but it’s an excellent conference. The Metastatic Breast Cancer Network (MBCN) will be there…stop by the booth to say hello to my friends Deb and Melanie!

More Info Here

More Info Here

 

R.I.P. Elisa Bond

NEB

I was sorry to learn that Elisa Bond died on March 26, 2014. My condolences to her friends and family.

Elisa was diagnosed with metastatic breast cancer  in February, just nine days after her husband was diagnosed with Stage 3 rectal cancer. As the New York Times reported, “Until February, Nathan and Elisa Bond were about as ordinary a 30-something couple as you could find in Brooklyn. Mr. Bond, 38, was a teacher and an artist; Ms. Bond, 36, worked for a real estate broker; their daughter, Sadie, had turned 1 in the fall. The last thing on their minds was cancer.”

 

I didn’t know the Bonds, but they touched my heart and many across the nation in April 2011 when they appeared on the “Today” show. ” In a couple of decades of covering everything from hurricanes to terrorist attacks, few stories — and people — have touched me more than the Bond family,” writes the Today Show’s Janet Shamlian. “I had an immediate connection with Elisa. We became friends. She was in Brooklyn and I was in Houston but we traded Christmas cards, emails and long-distance affection.”

In December 2011, the Bonds appeared on the Today Show again, but this time,  with some great news. Elisa had an excellent response to Herceptin and chemo–the cancer that had spread from breast to her brain and liver could no longer be seen. She had No Evidence of Disease (NED). Unfortunately, this did not last–her cancer returned in March 2012.

In April 2012, writing on the Family “Bond” ing Time” a blog for friends and well wishers, Elisa was candid as she reflected on the impending one-year anniversary of her cancer diagnosis and that of her husband. “I am a basket case,” she wrote. “My social worker and shrink had warned me that “anniversaries’ are often trying times for cancer patients.  I had no idea.  With the anniversary, everyone around us is joyful and celebratory saying ‘wow, isn’t it amazing?  A year ago, all this started and now you are both well.’  WHAT?  And I know what they are referring to…I was caught up in an exuberance.  The Today Show.  The “No Evidence of Disease” (N.E.D.) status. Nathan’s surgery and a cherry on top.  None of it was or is that simple.  And it definitely isn’t The Today Show’s fault.  They were only following my lead.  I was doing cartwheels.  This was the news I’d been wanting to hear for almost a year.  I/we heard what we wanted to hear.  We heard what I/we wanted to hear.”

I think many people with metastatic breast cancer can relate to the roller coaster Elisa described as well as the difficulty of explaining metastatic cancer to other people. I also think others with MBC  took  inspiration from her outlook, such as when she wrote of her great joy to see Sadie  complete her first year of nursery school:

I would say 99% of the time we live most days like there is a tomorrow.  We try not to get ahead of ourselves around here.  Planning our own calendar in advance is always crap shoot but we go for it just the same.  Then life sneaks up on us.  We look a few weeks ahead and a day on the calendar pops-up at us which has already been pre-set and not by us.  In this case, today’s event had not planned by us, but by the powers that be…the ever-powerful school calendar.  Today is that day. TODAY!  Today is SPECIAL!

Amen.

In lieu of flowers, the Bond family has asked people to consider donating to Sadie’s education fund  or the  Avon Foundation’s Breast Cancer research efforts.

Tagged , ,

What have we learned about Metastatic Breast Cancer, Charlie Brown?

Did-You-Know-Logo-SmallI am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a “kind” of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. N0w I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize that the absence or presence of cell receptors--as determined by one’s pathology report–guide treatment as does HER2 status. (“The  tissue is the issue,” as my friend Marnie says.) Tumor characteristics ultimately determine what “kind” of breast cancer one has.

Most breast cancer can be categorized as follows:

  • ER/PR+; HER2- (accounts for 65% of breast cancer cases)
  • ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
  • ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)

Update: A couple of readers with ER-/PR+ breast cancer noted that the above is a bit of an oversimplification.  Here is a further breakdown courtesy of BreastCancer.org :

  • ER+: About 80% of breast cancers are estrogen-receptor positive.
  • ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
  • ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
  • ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors.
  • ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.
  • HER2+: In about 25% of breast cancers,the HER2 gene doesn’t work correctly and makes too many copies of itself ( HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression).

Also: If you are reading scientific papers, it’s helpful to know that researchers typically  divide breast cancer into four major molecular subtypes: Luminal A, Luminal B,  Triple negative/basal-like and HER2 type. Read a detailed explanation here.

Inflammatory breast cancer (IBC), the kind my mom had, refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4. In general, IBC is first treated with chemo, followed by surgery and then radiation. Hormone receptor and HER2 status guides treatment–someone with IBC could have ER/PR+ HER2- breast cancer, for example.

I knew invasive ductal carcinoma (IDC)  (starts in ducts)  and is the most prevalent kind–it accounts for 50 to 75% of all invasive breast cancers. Invasive lobular carcinoma (ILC) (starts in milk glands, aka lobules)  is the next most common type, making up about 10 to 15% of all invasive breast cancers.  ILC generally does not have “lumps” like you’d find with IDC. Instead, ILC grows as sheets of cancerous cells–therefore it is harder to find via mammograms or self exam. With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary).  Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lungs or brain. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This is both because of my cancer’s characteristics ( ER/PR+; HER2-);  and because my cancer remains under good control. Someone with triple-negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond (because it lack the necessary cell recpeptors).

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. Most people with MBC see their oncologist every month. If  the cancer is under good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how well or  if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one of  the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not realize how poorly funded ALL metastatic cancer research is.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid of our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. 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.

Most of all, I did not know that there was so much that I did not know!

Tagged , , , , , , , , , , ,
Follow

Get every new post delivered to your Inbox.

Join 1,978 other followers