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…

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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.

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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!

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MBCN TO HOLD ANNUAL METASTATIC BREAST CANCER CONFERENCE WITH UNC LINEBERGER COMPREHENSIVECANCER CENTER SEPTEMBER 19-21, 2014

katherinembc:

Save the date! MBCN’s annual conference is Sept. 19-21 in Chapel Hill, NC.

Originally posted on MBCNbuzz:

FOR IMMEDIATE RELEASE

Metastatic Breast Cancer Network (MBCN)
Contact: Katherine O’Brien
Telephone Number: 888-500-0370 (voice mail)
Email Address: k.obrien@mbcn.org

Web site: www.mbcn.org

Downloadable  “Save the Date” flyer here

MBCN TO HOLD ANNUAL METASTATIC BREAST CANCER CONFERENCE WITH UNC LINEBERGER COMPREHENSIVECANCER CENTER SEPTEMBER 19-21, 2014

NEW YORK—MARCH 21, 2014—The Metastatic Breast Cancer Network (MBCN) is pleased to announce it will hold its 8th Annual National Conference September 19-21, 2014 in conjunction with the UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina.

“We are delighted to be coming to Chapel Hill, this fall,” says conference chair and MBCN board member Deb Tincher. “UNC Lineberger Comprehensive Cancer Center is one of the nation’s leading cancer centers—we are currently working with them to finalize the conference program, and we couldn’t be more excited. We’ll let everyone know when registration opens and we are ready to accept scholarship applications, but…

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I Wish Team Darwin Had Some Class To Go With Its Pancreatic Cancer Campaign

The controversial pancreatic cancer campaign has surely raised the profile of  the disease.  More people are probably aware  of its grim prognosis and why it’s imperative to avoid a misdiagnosis that consumes valuable time.

My sympathies go out to pancreatic cancer sufferers. Our understanding of their disease has remained about where it was 2,500 years ago. In his “biography of cancer”  Siddhartha Mukherjee contrasts the progress made in breast cancer vs. that of pancreatic cancer. The Persian queen Atossa had a primitive lumpectomy in 2500 BC. in 1890, she would undergo a radical mastectomy. In the early 20th century, she would try radiation; in the 1950s, a localized mastectomy plus radiation. In the 1970s and 1980s, she would try new therapies. And in the 1990s, genome sequencing would have targeted what mutation Atossa carried.

But, Mukherjee noted, if she suffered metastatic pancreatic cancer, her prognosis wouldn’t change more than a few months over the last 2,500 years. That is sad and shocking.

Do you know what is also sad and shocking?

One can already sense Team Darwin’s Greg Phitidis and Nick Radley clearing off some shelf space on their book cases as they anticipate reaping heaps of awards for their massively “successful” campaign.

Team Darwin is the brain trust behind the Pancreatic Action Network’s “I Wish” campaign, in which pancreatic cancer patients wish for breast, testicular or cervical cancer on the grounds that these cancers have a better survival rates.

Phitidis explained his company’s work on this website for marketing professionals. “Despite their invariably smaller budgets, charities have a huge natural asset which their corporate counterparts spend millions trying to develop – emotion,” writes Phitidis. “There needs to be a bolder culture within the charities themselves. That means adopting a leadership and decision-making approach more in line with organisations in the private sector, with trustees behaving more like ambitious board directors. But unless you’re a big charity, marketing is not a professionalised function in the organisation. In many, there is a culture of consensus and mutualism; the desire to do good is coupled with the desire not to cross an imaginary line. The opportunity to cut through is there, it’s just the willingness to grasp it…

So our strategy from day one was to confront people with the facts. We did that by showing how it’s a situation so desperate that anything else seems more attractive. . .This would be a crass approach were it not completely true. The ‘I wish I had…(another type of cancer)’ lines chime like cathedral bells with every pancreatic cancer patient we’ve spoken to, and with everyone who has lost someone to the cancer. It is simply an unbearable insight expressed.

In a day, a week, or a month, all the people who were up in arms by our campaign will no longer be upset. But the country will have woken up to a silent killer. Wake up calls are always a jolt, but they leave you awake.

Oh my. This excerpt should get some kind of commendation for Outstanding Achievement in Tone Deaf Rationalization. If Phitidis weren’t so earnest, this essay would actually be hilarious.  Meet Marketing and Emotion,  the Castor and Pollux of the modern charity pantheon. “There needs to be a bolder culture,” declares Phitidis.  Is it just me or is anyone else having flashbacks of Gordon Gekko in “Walll Street”: (“Greed is right. Greed works. Greed clarifies, cuts through, and captures the essence of the evolutionary spirit. Greed, in all of its forms — greed for life, for money, for love, knowledge — has marked the upward surge of mankind.”)

This campaign isn’t crass! It’s completely true! “Completely true” must be some kind of British slang for “artfully presenting certain statistics in a very limited context that suggests breast cancer is just awesome sauce.”

 Phitidis talks about confronting people with facts  “by showing how it’s a situation so desperate that anything else seems more attractive. Notice that Phitidis doesn’t use ANY qualifier. He doesn’t say  “almost anything” or “virtually anything.” Were I a Team Darwin client I would marvel at Phitidis’  graceful way with sweeping generalizations. (Also if proper nouns were allowed in Scrabble, “Phitidis” would probably be a Triple Word Score.)

And the cancer patients don’t just say “Thanks, your campaign totally captures my reality of being handed an awful prognosis.” No, Phitidis must have happened upon a closeout sale at the Simile Factory. Because he tells us the campaign’s tagline “chime[s] like cathedral bells with every pancreatic patient we’ve spoken to and with everyone who has lost someone to cancer.”

Oddly enough, I  heard church bells too. Only mine were funeral bells tolling for the half a million people around the world who will die from metastatic breast cancer in 2014.

Like a bullfighter wielding his cape, Phitidis executes another marvelous veronica when he tells us that EVERYONE who has lost someone to [pancreatic] cancer approved of the campaign. Wow–is Phitidis like Commissioner Gordon in “Batman”? Does he have some Bat Signal that reaches the thousands of people who lost someone to pancreatic cancer AND simultaneously registers their opinions of Team Darwin’s creative output? Modern technology is certainly wonderful.

We now come to the pièce de résistance of this essay–”In a day, a week, or a month, all the people who were up in arms by our campaign will no longer be upset.”

Not just “some” or “most” of the people, but ALL of them.

Well, of course some of the most outspoken people–those with metastatic breast cancer–will no longer be upset. Because they’ll be, you know, dead.

I don’t have Phitidis amazing ability to instantaneously poll the thousands of people with metastatic breast cancer. But at least ONE of us will still be upset.

 

 

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Please, No More Disease Olympics

Courtesy of Musa Mayer, www.advancedbc.org

Courtesy of Musa Mayer, http://www.advancedbc.org

In response to this pancreatic cancer group’s “I wish” campaign:

Pancreatic cancer and metastatic breast cancer share some things in common.

>Poor median survival. Median survival for metastatic breast cancer is 2.5 to 3 years. Ultimately no one “beats it.”

>Woefully underfunded research. Less than  5% of all cancer research funding is allocated to metastatic breast cancer. (ALL metastatic cancer research is underfunded.)

>Limited surgical options. Metastatic breast cancer spreads to bone, brain, lung and liver. It can’t be cut be cut out.

When you quote a five-year 87% survival rate for breast cancer, please understand the context.

>Those statistics are for early stage breast cancer; not metastatic disease.

>People die of metastatic disease, not primary breast cancer.

>Breast cancer is not one disease.

>Survival, mortality and incidence are not the same.

>Mortality numbers tell the story more precisely than survival numbers. Breast cancer kills 40,000 annually in the US and half a million worldwide.

>Screening skews the survival numbers. The more we screen, the more we diagnose and treat people with breast cancers that would not have been a threat to their lives (some DCIS, other slow growing invasive breast cancers, and others that are dormant or regressive); so it looks like survival for early stage breast cancer is 98 percent in the US.

>But this is only a 5-year survival number—and includes the 20-30 percent of people who will have a metastatic recurrence and die of the disease later.

>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.

Suggesting breast cancer is “enviable” unfortunately may give people the idea that everyone who has it is cured. With these “great” numbers in mind, perhaps people will be tempted to skip their regular doctor and screening appointments–why worry? By the “I Wish…” campaign’s reckoning this is a “good” cancer.

Early detection is certainly helpful, but it is NOT a breast cancer cure. Indeed, early detection carries its own set of complexities–over treatment, a false sense of security, etc. (See http://mbcnbuzz.wordpress.com/2013/04/27/our-feel-good-war-on-breast-cancer-mbcn-responds/ )

Finally, I concur with the American Cancer Society’s Otis Brawley: “Basic scientific research, some of it not focused on a particular cancer site, has given us so much insight into cancer that we can actually see a day in the very near future in which it doesn’t even matter where the cancer started. In other words, the clinician is not going to be interested in whether it’s lung cancer or breast cancer or colon cancer. The significant questions for treatment will be: Which genes are mutated? Which genes are turned on? Which genes are turned off? Which genes are amplified?”

Please no more Disease Olympics. Funding the best science helps us all.

Pancreatic Cancer Action Campaign: I Wish I Had Breast Cancer

Congratulations, Pancreatic Cancer Action.

Your brilliant marketing plan is working. It was a stroke of genius to have Tube ads and YouTube videos of people saying “I wish I had testicular cancer” and “I wish I had breast cancer.”

Really?

Really?

The UK-based  Pancreatic Cancer Action’s Ali Stunt  was diagnosed with pancreatic cancer age 41 in 2007.  Upon learning the disease has a 3% chance of survival and an average life expectancy of just months, she found herself  wishing she had  a cancer with a  better chance of survival. “In fact the cancer I personally wished I had was breast,” Stunt writes. “[My friend with breast cancer] was telling me how grueling her treatment was and how difficult it was to cope with the diagnosis. While I was sympathetic…I couldn’t help but think every now and then, ‘it’s alright for you, you have an 85% chance that you will still be here in five years time – while my odds are only 3%.” Cancer envy: I’d never have thought I would be envious of anyone with breast cancer, but I was.

Oh boy. Because obviously the best way to call attention to one disease is at the expense of another.

There’s just one problem. Breast cancer is a like a fat man wearing a Hawaiian shirt: It covers a lot of ground. If you’re going to wish for breast cancer, make sure you put in a special request for the non-metastatic kind. Because in 2014, there is no cure for metastatic breast cancer. The median survival rate is surely not as good as the Pancreatic Action Network  seems to think it is. In general, breast cancer survival figures don’t necessarily represent significant gains, as they are distorted by the over diagnosis of Stage I breast cancers, which have increased five-fold since the advent of mammography in the 1980s.

Also, our research situation is much like yours: it sucks. Metastatic breast cancer is responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the research budget.

Click here for the "I Wish" video

Click here for the “I Wish” video

The New York Times said people with metastatic breast cancer “live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.” Still want to sign up?

Perhaps most troubling is the notion of what the American Cancer Society’s Otis Brawley calls “disease Olympics,” i.e., when advocates for one disease try to increase funding for their disease by decreasing funding for another disease. “I believe the wise advocate tries to get more money for all cancer research and does not try to undermine another disease in favor of the disease that he or she is interested in,” says Brawley. “The wisest advocacy for cancer science is support for more money for cancer research in general and support for funding the best science and encouraging scientific investigators to maintain an open mind.  Scientists must look for additional applications of findings beyond just their cancer of interest.”

We are all in this together.  The reason that  testicular cancer has such an enviable cure rate can be summed up in one word: cisplatin. As Brawley notes: “Cisplatin is now the most commonly used chemotherapy in the treatment of lung cancer and ovarian cancer. It is also used in some breast cancer treatments. The drug oxalaplatin used in colon cancer therapy was developed from cisplatin.  So testicular cancer research benefited a number of other cancers.”

I’m sure  Pancreatic Cancer  Action meant well.  “Our advert is not stating that the person wishes they contract breast/cervical/testicular cancer, rather they wish they could swap pancreatic cancer for a cancer that will give them a better chance of survival,” writes Stunt. “We have selected cancers for our campaign that have a significantly better survival rate than pancreatic cancer. Plus they are ones that have benefited from the tremendous campaigning done by cancer charities to raise awareness of these cancers and increase the levels of funding over the past 10-15 years and in some cases have seen survival rates increase by over 50%!”

Well, guess again. Breast cancer is a lousy disease any way you slice it. Take a look at our numbers.

Is pancreatic cancer research underfunded? Undoubtedly. Is there a need for pancreatic cancer awareness? Certainly. Was this campaign the best way to change the status quo?

No.

 

“All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve. While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.” —Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston

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Social Media and Breast Cancer: A Call for Greater Diversity

katherinembc:

We desperately need more diversity in social media, especially when it comes to metastatic breast cancer. We need to talk about why too many Americans continue to die from metastatic breast cancer before their time. We need to acknowledge that the black community is disproportionately represented. We need to make sure our efforts–online and in person–are inclusive. We need to do something now!

Originally posted on MBCNbuzz:

Barbra's legacy is The Pinkwellchick Foundation.

Barbra’s legacy is The Pinkwellchick Foundation.

The embers are still glowing from the social media firestorm Emma and Bill Keller ignited over the past few weeks. The husband-and-wife journalists each wrote articles about Lisa Bonchek Adams, a young mom diagnosed with metastatic breast cancer in 2012.

Emma Keller, writing online for the Guardian, questioned Adams’ use of social media to publicly chronicle her cancer treatment. (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.”

The Kellers obviously don’t understand metastatic breast cancer. The average metastatic breast cancer patient may receive eight or 10 different treatment regimens in sequence. Contrary to the Kellers’ representations…

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Gone Too Soon: Remembering Some Friends We Lost in 2013

Click here to play video

Click here to play video

Despite billions spent on breast cancer research, 40,000 US women (and men) still die of breast cancer every year. Worldwide, more than half a million people die annually from this insidious disease.

As we remember those who died in 2013,  the cruelty of this disease has never been more apparent. They were young, old and all points in between. But one thing can be said of each of them: they are gone too soon. Here is video featuring  are some people who died from metastatic breast cancer in 2013.

Actress Marcia Wallace ( 1942 − 2013)

Lisa “Michigoose” Quintana (1960-2013)

Barbra-Watson Riley  (1968-2013)

Author Jen Smith (1977-2013)

Jeanne “Assertive Cancer Patient” Sather (1954-2013)

Advocate Maria Weltzel (1944-2013)

Actress Bernie Nolan (1960-2013)

Newspaper executive Mary J. Corey  (1964-2013)

Writer Lisa Lynch (1979-2013)

Mary “Apple”  Stevermer  (1956-2013)

Pat “Frapp” Frappier  (1959-2013)

Beth “Spam Girl” Bell (1973 -2013)

I would like to add:

Donna Peach (1952-2013)

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