Tag Archives: MBC

What Metastatic Breast Cancer Patients Wish Medical Oncologists Knew

Medical oncologist James Salwitz writes a blog called “Sunrise Rounds.”  

In a recent post, “Secrets of Cancer Survivors,” Dr. Salwitz offers 25 tips about “dealing with the dread disease.” He acknowledges that as someone who has never had cancer he isn’t qualified to pontificate about it–his intention is only to share what he has observed over his years of treating patients.

While I agree with most of Dr. Salwitz’s suggestions, it bothers me that he makes no distinction between someone being treated for early-stage disease and those who have advanced disease. It’s not as though people with Stage IV breast cancer could have prevented or survived the disease by adhering to these 25 points. I know many people who were model patients with supportive families and wonderful friends and adorable pets. They took excellent care of themselves–they hydrated, they exercised and they journaled. They were educated and proactive–I am pretty sure at least one of them could have given me a very sound second opinion.

These patients did “uncover every stone” just as Dr. Salwitz urges. But all of them died. All of them had such spirit and heart–many left behind young children–they tried their hardest. Maybe it did buy them a little more time, but ultimately they did not survive. There is no extra credit in metastatic breast cancer–no character witnesses to testify on our behalf. Molecular biology is heartless.

Much of what Dr. Salwitz says is common sense–be on time, bring a friend, don’t let cancer take over your life, educate yourself, ensure all of your medical providers are on the same page and so on. This may improve patients’ overall experiences but I doubt it will truly impact outcomes in the clinic. So much of that depends on subtype, prior treatment, comorbidities and, indeed, what type of cancer the person has. Metastatic testicular cancer is curable; metastatic breast cancer is not.

I can’t offer survival secrets. But I would like to give Dr. Salwitz and his cohorts some ideas on improving the patient experience–particularly as it relates to those dealing with metastatic breast cancer.

RELEASE TEST RESULTS PROMPTLY. When you have Stage IV breast cancer, you generally are scanned every four months to see if  a treatment is working. Some oncologists release test results as soon as the scans are read, others prefer to go over them with the patient. Waiting for results is awful–if you expect a delay (a holiday or some scans results will be delayed) please advise your patients.

Here’s another pro tip: When making a routine call, avoid the ambiguous and ominous message: “This is Dr. So and So’s office. Call us.”  HIPPA may preclude you from saying something like “Your blood work is fine,” but it may be possible to say something like “No big deal, call at your convenience.”

WATCH YOUR LANGUAGE. Shortly after my Stage IV diagnosis, my doctor said she was going to restage me. Great! Maybe I didn’t really have Stage IV breast cancer. But it turned out she just wanted to send me for scans to see if my treatment was working. Please clarify medical jargon.

HELP ME UNDERSTAND WHERE I FIT IN. When I was first diagnosed, I only knew I had Stage IV breast cancer–it was helpful to know I had a small volume of metastatic disease and that it was confined to my bones and that this was “good.”

Now, some years down the road, I want to know what treatments might be next for me–do I have many? Just a few? What is the range of AIs, oral chemos and IV chemos? Not everyone does, but I do like to think ahead.

HAPPY PATIENTS ARE INFORMED PATIENTS. The patient who is waiting and waiting in the aptly named waiting room will likely be less anxious if they know up front you are running behind. Or if the pharmacy is behind. Or if some emergency came up. Just sitting there like a bump on a log sucks.

WHAT IS NOTHING TO YOU IS SOMETHING TO ME. For years, my hospital used a CT contrast drink that required mixing with water and consumption the night before the exam. When it changed to a different type of contrast (no water added, consumed the day of the test) it was unsettling. I was used to my routine–the one thing I can control. And now it is different. No one explained the rationale behind the change–until I asked.

That wasn’t a huge deal–but other changes are. For example, one patient I know  was filled with anxiety after her oncologist’s office called to reschedule an appointment–it turned out the doctor had to participate in a  clinical trial conference call–nothing at all to do with her.

HIRE WISELY. Your front office staff, nurses and techs are a reflection of you. Would you ever tell a newly diagnosed patient “Gee, I’m having a really bad day…I can’t figure out how to install this toner cartridge in my printer”? Well, that’s what your receptionist told me–and I could readily see that her office equipment issue was worse than my chronic, progressive and ultimately fatal disease.

AUDIT YOUR PHONE LINES. Sometimes when I call my oncologist, the “good” phone person answers. What a relief–she is a long-time employee, very friendly and I know she will give the nurse a clear message. Other times, I get the “bad” phone person. Her greeting is both hostile and brief: “Cancer Center” is all she ever says but it clear that what she means is “Why must you patients continue to inconvenience ME?” She will take down the absolute minimum of information–usually just my phone number. This generally leads to further delays because the nurse will have to call me, listen to my issue, hang up so she can consult the oncologist and then call me back.

LISTEN AND LEARN. I  have noticed my oncologists’ notes often reflect who accompanied me to an appointment–but I have never been asked about this. Sometime I am not alone–but the person who is with me had to take a work call–or stay with her young kids out in the waiting room.

I have a friend who prefers to go to her appointments by herself. If she is getting chemo, she can let the nurses take care of her–she doesn’t have to worry about taking care of someone else. Similarly, she can be direct with her oncologist without fear of upsetting her companion.

 

QUIT IGNORING US. Go into an oncology clinic and try to find information and support services for metastatic breast cancer. You will find that most of the material is geared for early stage breast cancer–the American Cancer Society, a group that supplies publications on a wide variety of cancers, just gives us a page or two in its general “So, You’ve Got Breast Cancer, Sure Sucks to Be You” brochure. Note that 90% of those in the metastatic breast cancer ranks were previously treated for early stage breast cancer–therefore about 90% of the material in the general breast cancer brochure is irrelevant. Groups like MBCN, LBBC, YSC and the Metastatic Breast Cancer Network do offer brochures but patients generally have to seek these publications out on their own.

LET’S BE HONEST ABOUT THOSE TOUGH CANCERS. As someone with MBC, I really struggle during October–all those happy pink celebrations–usually for people with the curable form of the disease. What about people with pancreatic cancer–the majority of whom are dealing with metastatic disease? How about the lung cancer patients? Lung cancer is the single largest cause of cancer deaths. Not everyone with lung cancer smoked but that is the popular assumption and probably the reason we don’t see professional sports teams donning special gear to mark Lung Cancer Awareness Month.  Rather than ignoring the “difficult” cancers, why not give us equal time? Aren’t our stories worthy of sharing?

BusChancesPLEASE FORBID YOUR STAFF FROM SAYING THE BUS THING. Last year, I was upset to learn my disease progressed. A nurse attempted to cheer me up by invoking the dreaded bus phrase: “Well, you never know, you could get hit by a bus.” This only served to make me more upset. The number of people who die from MBC annually (40,000 in the US) FAR exceeds the number of pedestrians mowed down by buses and other vehicles (something like 4,300  in the US). So actually, I have a fairly slim chance of getting hit by a bus, but  a 98% certainty this disease will flatten me–although I don’t actually have a time frame for that.

INVEST IN PATIENT COMFORT. I visited one oncology office where the front desk looked like the bridge of the Starship Enterprise–very modern and gleaming. Meanwhile the waiting patients were crammed in a tiny vestibule with chairs that were probably salvaged from the Partridge Family’s garage. Same thing in the exam room–more crummy mismatched chairs and paper gowns.  Small things make a difference!

This isn’t a list of grievances–just things I think that could be better. (I’m sure I have overlooked a few.)  I have been fortunate to be under the care of gifted oncologists and I am grateful for their empathy and skill  and all the dedicated people that work with them . I hope my patient perspective is helpful!

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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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Next Time Won’t You Sing Along With Me: Metastatic Breast Cancer Theme Songs

I recently attended the national meeting of a breast cancer advocacy group. I had never attended this annual event, and overall, I liked it. The speakers were good and the attendees were attentive and enthusiastic. There was even a special session on metastatic breast cancer.

The event concluded with a reception in a hotel ballroom featuring a DJ who played all the block party favorites: The Electric Slide, YMCA and the group’s unofficial theme song, “I Will Survive.”

None of the metastatic breast cancer events I have attended featured dancing or music–it’s  like “Footloose” only starring people with cancer vs. small-town high school kids. In the weeks following the advocacy meeting, I found myself pondering the theme song question–if there WAS music at an MBC event, what would our signature song be?

My family’s “traditional” party song is Kool & The Gang’s “Celebration,” which I guess is from about the same era as “I Will Survive.” I think it was played at one of my cousin’s wedding reception in the early 1980s and it just kind of stuck. It’s a good song, but surely there must be something more recent, something that hasn’t been played to death (so to speak)?

I thought of One Republic’s “We’re Marching On.” I think it’s pretty good–a kind of crowd anthem with a driving beat. But I’m not sure a lot people in the typical MBC demographic would know this one.

I like Gym Classs Heroes’ “The Fighter.” (Sample lyric: Here comes the fighter / That’s what they’ll say to me, say to me, say to me /This one’s a fighter.) That’ s a good song, too, but it’s not really made for dancing.

There’s also Givers’ Up, Up, Up. It has the benefit of having been featured on “Glee,” which means more people would probably know it. On the other hand, it’s also featured in this lame commercial for Lipton ice tea. Plus, let’s face it, the song  probably is really about taking mind altering drugs.

But then as I prepared this post for MBCN’s blog, I had an epiphany. It happened as I reviewed the results of a  recent survey of 1,273 women in 12 countries. Nearly two-thirds (63%) of the women surveyed said they “often feel like no one understands what they are going through” while two in five women said they “feel isolated from the non-advanced breast cancer community.”

Sometimes, yes, I do feel like that myself. But to be honest, I also felt alienated from the rest of the world during much of the 1980s when I was a teenager, a feeling captured perfectly in this1984 smash hit.

Feel free to join in:

OH WE’RE NOT GONNA TAKE IT
NO, WE AIN’T GONNA TAKE IT
OH WE’RE NOT GONNA TAKE IT ANYMORE

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Still In Search of the Next Metastatic Breast Cancer Celebrity Spokesperson…

As I read Angelina Jolie’s New York Times article, I thought, “Wow, a celebrity spokesperson for hereditary breast and ovarian cancer! That will really focus some attention on this issue!” And then I compared Jolie’s statements to those of other celebrities who have shared their own experiences with metastatic breast cancer.
This didn’t take very long because there aren’t any.

Edwards made her metastatic announcement in 2007.

Elizabeth Edwards is probably the closest we’ve come to having a high-profile spokesperson –certainly she is the only one I can think of since my own metastatic diagnosis in 2009. I wouldn’t care to be a celebrity let alone an ill celebrity in the national spotlight. I can’t comment on Edwards’ personal or political life. But I am so grateful that she talked about having metastatic breast cancer. I hope Cate Edwards and her siblings know what that meant to others living with the disease.

I remember coming across an article CNN’s Shahreen Abedin wrote in 2007. It was called “Surgeon Offers Answers on Metastatic Breast Cancer.” It was straightforward and, because Edwards had bone mets like me, I learned a lot about my specific metastatic issue.

CNN: What are survival rates for Stage IV metastatic breast cancer?

Dr. Rache Simmons: It depends on where the cancer is located. Patients can do very well for years if it’s isolated just to the bone. If there is a speck on the lungs or other organ that turns out to be cancer, that could mean a much worse prognosis, a much shorter life expectancy.

The bone is often the first place to spread to with breast cancer. Most breast cancer systemic recurrences (meaning the kinds that spread to the rest of the body) happen in the next two years after the first time the cancer is diagnosed. The next plateau is within five years. After that, it’s very rare to have recurrences. However, recurrences do still happen, even as late as 10 years later. But that’s very unusual.

For patients with small cancers and negative lymph nodes with no evidence of disease spread at the time of diagnosis, still about five to 10 percent of women end up developing metastatic disease.

If the recurrence happens later in the five-year period after diagnosis, rather than earlier, that’s a good sign; the patient will probably have a better response to the treatments. If the recurrence happens very soon after diagnosis, like six months, a year, or 18 months, then patients tend to do worse.

CNN: What would the standard treatment be once recurrence is diagnosed?

Simmons: Probably hormonal therapy. Mainly anti-estrogen types of treatments — like Tamoxifen or aromatase inhibitors. Sometimes chemo is an option, either in addition to or instead of hormone therapy.

Sometimes radiation therapy to localized area, especially if the patient is in pain.

To find it accidentally, when the person is having no pain, is a very lucky thing. Usually what happens is a patient develops a pain and then gets X-rays — and then they find it. [The Q&A continues here.]

The article gave me a lot of  hope when I really needed it.

I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer. The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”

Most people with metastatic breast cancer have previously been treated for early stage breast cancer. Not me–I was Stage IV from my initial diagnosis, something that happens to between 6% and 10% of those living with MBC.

My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”

Not very helpful to my particular situation.

Prior to my metastatic diagnosis, when it was thought I probably had Stage III breast cancer, my would-be surgeon gave me an 85-page booklet called “Breast Cancer: Treatment Guidelines for Patients.”

I am a Phi Beta Kappa graduate of the University of Illinois. I would rank “Breast Cancer: Treatment Guidelines for Patients” somewhere between “Beowulf” and James Joyce’s “Ulysses” in the annals of Massively Complex and Confusing Literature. Beyond the dense text, it also had flow charts seemingly inspired by a Chinese menu: Pick One From Each Column: Type, Tumor Size, HER2 and Receptor Status, etc.

Eventually, I came across “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”

This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”

The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”

This was certainly a top-of-mind question for me.

“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”

Those few sentences gave me a lot of hope.

“There is something in our national psyche that makes the diagnosis of cancer in a celebrity something more important,” noted ACS’ Dr. Len Lichtenfeld in 2008 following Christina Applegates’s revelation she’d had a BMX. ” They rise above the rest of us when sadness impacts their lives, and for many of us their disease becomes our disease…”

I hope Angela Jolie’s article will help someone else wrestling with hereditary breast and/or ovarian cancer issues.

In one intervew Edwards touched on what she termed “the competing responsibilities” of being in in the public eye with metastatic breast cancer:  “One [responsibility] is to say to people with breast cancer, ‘This is really hard what you’re going through. Believe me, it’s hard for everybody. … This is perfectly normal to feel exhausted or perfectly normal to feel irritated sometimes, and don’t think less of yourself because those are your feelings.’ On the other hand, we don’t want to be treated as if we’re invalids. So when I’m feeling lousy, I don’t feel like I have the same permission to share that, but I do want people to take care of us — to take care of my sisters, in a sense.”

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Highlights from MBCN’s 2012 Chicago Conference on Metastatic Breast Cancer

Canadian friends Penny Overes, Catherine Spencer and
Danielle Smith were among the 200+ attendees. Alberta represent!

MBCN’s 6th Annual National Conference (“Moving Forward With Metastatic Breast Cancer,”) took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at MBCN.org. In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey. Pam is a long-time participant on the BC.Mets.org site and, as you will see, takes wonderful notes.
Part One: General Sessions

Part Two: Selected Breakout Sessions

We were honored to have Medical Lessons blogger and Atlantic correspondent  Elaine Schattner join us. Dr. Schattner is a trained oncol­ogist, hema­tol­ogist, medical edu­cator and jour­nalist who writes and speaks on med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. Her work has appeared in Slate, the New York Times, Sci­en­tific American, Cure Mag­azine and the New York Observer. Read  her great article for the Atlantic here.

MBCN Honors Dr. Pat Steeg’s Dedication to Metastatic Research With the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award

MBCN board member Shirley Mertz presented the award to Dr. Pat Steeg.

In other conference news, MBCN presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. “For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials,
researchers typically are trying to determine if a drug shrinks metastases.
“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.” Steeg referenced a
perspective piece, “The Right Trials,” she wrote for Nature this past May.

“The proposal I’ve put forth should apply to a number of different cancers, particularly those where the majority of patients are diagnosed before they have full-blown metastatic disease, or if they have limited, treatable metastatic disease,” Steeg told NCI Cancer Bulletin this past June. “One could imagine applying this to prostate, bladder, and colon cancers.”

Don’t Miss These Awesome Photos:

But wait! There’s more! Awesome conference photographs, courtesy of Ellen Averick Schor are Here.

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NCI’s Pat Steeg: Let’s Redesign Clinical Trials to Test Therapies That Prevent Metastasis

More than 200 people with metastatic breast cancer and their supporters came to Chicago for the 2012 National Metastatic Breast Cancer Conference held on Oct. 13th, National Metastatic Breast Cancer Awareness Day. Photo credit: Ellen Schor

As hundreds of metastatic breast cancer patients offered a standing ovation, the Metastatic Breast Cancer Network (MBCN) presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. The award was given at MBCN’s 6th Annual National Conference which took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago.

“For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

 

Shirley Mertz with NCI’s Pat Steeg

The award—which includes a monetary grant to be used for metastatic research—is named after MBCN’s former President, Ellen Moskowitz, and former Vice-President, Suzanne Hebert.  “Ellen and Suzanne worked side by side for five years to establish MBCN as the voice of people living with metastatic breast cancer,” said Mertz. “Together, they pushed for change and inspired many to take action to promote awareness and provide education for metastatic breast cancer patients and professionals alike.”

The MBCN board wanted to honor these remarkable women by recognizing a scientist and researcher whose persistent leadership and work embodies what Ellen and Suzanne fought for—research about metastatic disease that could result in treatments to extend the lives of metastatic breast cancer patients.

Mertz presented the award to Steeg “with great appreciation and anticipation for the future…along with our deep thanks for your dedication and persistence in metastasis research.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.

“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.” (Steeg referenced a perspective piece, “The Right Trials,” she wrote for Nature this past May: http://www.nature.com/nature/journal/v485/n7400_supp/full/485S58a.html)

Conference chair and MBCN board member Deb Tincher noted that many attendees cited Steeg as their favorite speaker at the 2012 event. “One person described Dr. Steeg as ‘spectacular and passionate’ and we certainly agree,” Tincher said. “We also agreed with the rest of her comment: ‘Dr. Steeg is in the trenches helping us and it showed!’ We are proud to recognize and support Dr. Steeg’s work.”

“I’m glad Dr. Steeg is on our side!” said one metastatic breast cancer patient at the 6th Annual MBCN Conference.

 

ABOUT MBCN’s ANNUAL CONFERENCE

MBCN held its first conference at Memorial Sloan-Kettering Cancer Center in 2006. Subsequent conferences have been held at M.D. Anderson, Dana-Farber, Indiana University’s Simon Cancer Center and at Johns Hopkins.

 

ABOUT THE METASTATIC BREAST CANCER NETWORK

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer. MBCN was founded in 2004 by Jane Soyer and Nina Schulman. When diagnosed with advanced breast cancer, they experienced feelings of isolation from the very groups established to provide support. They felt the stigma of being a “failure” in the breast cancer community. Their belief that cancer cannot be viewed as a disease from which one is either a “survivor” or to which one has succumbed, fueled their desire to advocate for change.  See www.mbcn.org.

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Why Are You Doing This?

My mom had inflammatory breast cancer. She died in 1983.

The other night I participated in a free WEGO Health webinar: “Navigating Your Health Narrative.” Lisa Emrich, (MS and RA); and Jenni Prokopy, fibromyalgia; and WEGO’s Amanda Dolan offered tips for better health blogging. One basic question any health blogger should ask is “Why am I doing this?”

To paraphrase George Mallory: Because I am here.

Recently a schoolmate posted our first grade class portrait on Facebook. As I studied the faces, distant memories drifted back: Tom’s theft of my Husky red pencil; Scott’s thwarted attempt to cheat on a test and Fred’s pre-luncheon ritual of sitting on his daily baloney sandwich prior to unwrapping it.

What would they remember about me? Probably that I seldom spoke. I was very shy, a situation compounded by being one of three children born in the same year. (I have a twin brother and one who is not quite a year older.)

I used to have a defaced picture of The Haymarket Riot from my sister’s history book. Her friend replaced “Haymarket Riot” with “The O’Brien Family at Dinner Time.” It wasn’t far off the mark. Dinners at our house were raucous gatherings, with everyone competing for their share of attention and food. (Not necessarily in that order.)

Since two of my five brothers were in my class, I had no school news to impart–they always beat me to it. Most of the time I just enjoyed listening to everyone else. I was in awe of my older brothers and my sister. They were bigger, smarter and burdened with the task of setting good examples.

As a World War II and Korean vet, my father was old school all the way. In the early 1970s, hippies were still commonplace. So we heard a lot of anti-mope rants. (“Mope,” “dolt” and “chowderhead” formed my father’s great triumvirate of insults.)

Occasionally, my father would solicit my opinion. Inevitably, my twin, Kevin, would respond for me. “Do you mind?” my father would say, shushing him and signaling for general silence. “I am attempting to talk to your sister. Now, what do you have to say, Kathy?”

I was embarrassed to be singled out. I spoke softly and briefly. At school this often prompted the teacher to say: “Class, could anyone hear that? I didn’t think so. Now let’s hear that again, Kathy, and this time speak up.”

I was quiet like my mother but certainly not as self-effacing. If I was modest it was only because I was too timid to toot my own horn. In spirit, if not in deed, I was like my father–a bit of an intellectual show-off.

“It amused her that our ways were quite opposite,” my father wrote shortly after my mother died. “When I did [something] it would be followed by a detailed commentary on the difficulties of the task and the discomforts I had endured and the magnitude of what I had accomplished and its lasting value.”

If my father painted the back door he would tell my mother it would probably cause an immediate rise in neighborhood property values and make the door itself a place of pilgrimage for connoisseurs of well-painted doors who would come from afar to admire the genius of its brushwork.

“At such times the fond patient eye would fall upon me with a satirical look,” my father recalled. “Puffing out her cheeks to simulate the contours of the Irish face as it pleased her to display them, she would frown importantly and march up and down pointing to herself. My venture into pomposity and egotism would end, like so many of its predecessors, in delighted laughter.”

My mother was diagnosed with inflammatory breast cancer (IBC) in 1981. IBC accounts for between 1 to 5 percent of all U.S. breast cancer cases–NIH classifies it as a rare disease. Although some small progress has been made since my mother died almost 30 years ago, it remains the most aggressive type of breast cancer.

It is estimated that between 1% and 5% of all newly diagnosed breast cancers each year present as IBC; because of its rarity, it is listed with the Office of Rare Diseases at the National Institutes of Health.[1] While the number of cases of IBC is relatively small compared with the overall number of breast cancers, it is still a substantial number compared with many other rare tumor types…We cannot use the small number of cases as an excuse for the lack of clinical trials; rather, we should view it as a mandate for making novel treatment strategies available to all patients with this diagnosis.

via Have We Made Progress in Inflammatory Breast Cancer? Not So Fast – Cancer Network.

IBC patients’ median ages range between 45 and 55 years old. It occurs more frequently and at a younger age in African Americans vs. Caucasians. (See Inflammatory Breast Cancer Foundation – What is IBC? as well as IBC Support.)

I was 15 when my mother was diagnosed with IBC. Unlike other breast cancers, IBC typically does not present with a lump. The breast often looks swollen or red, a change that sometimes can happen overnight.

My mother’s treatment began with a mastectomy in our community hospital. In hindsight, I don’t know why my mother didn’t go to a university hospital–I can’t believe her small town surgeon would have seen many cases of IBC or even garden variety breast cancer for that matter. My parents went to the Mayo Clinic for a consultation. No one in our family had cancer. We didn’t know anyone with cancer. If you had a serious health crisis, everyone knew the Mayo Clinic was THE place to go.

But even the Mayo Brothers were no match for a disease where the five-year median survival rate is approximately 40 percent today. (It was worse in the 1980s. Today, IBC has a three-year survival rate of 42 % vs. 85% for non-IBC disease.)

Although 3-year survival from IBC has improved from 32% in 1975-1979 to 42% in 1988-1992 from the use of combined treatment modalities, women with IBC still have far worse survival than those with other types of breast cancer (all stages and non-IBC histopathological types combined [had a] 3-year survival [of] 85% in 1988-1992)
Source: http://www.ibcresearch.org/research/

From the community hospital, my mother went on to Lake Forest Hospital for in-patient chemotherapy. My older siblings were away at college leaving only my father two brothers and me to visit my mother in Lake Forest and remark on the amenities offered in a rich person’s hospital. (Mothers recuperating from blessed events could order lobster and there was a grand piano by the flight of stairs that led to the maternity ward.)

I hated going to visit my mother there. The nurse’s station had stern notices warning visitors against sitting on vacant beds. As we walked down the hall we would sometimes hear retching or terrible groans emanating from other patients’ rooms.

Our travels also took us to Lutheran General and Northwestern. I can’t remember where my mom had radiation–maybe at Lutheran General. There was a nurse she really liked at Northwestern–a very friendly young woman.

My father went to some of my mom’s appointments, especially if she were trying something new or meeting a new doctor. But most of the time my mother, who didn’t drive, asked which ever child was with her to remain in the waiting room while she saw the doctor.

My family in August, 1975. Nulliparity obviously wasn't a problem.

Oncology regimens have improved dramatically since the early 1980s. In my recollection, my mom’s treatments were on par with Civil War battlefield amputations. I think she had a radical mastectomy–which is no longer done. Today’s anti-emetics didn’t exist–my mom would throw up for days when she was having chemo. Later, when she had radiation, her skin was broken and oozing and her back–either because it was burned or itching or both–was a constant torment.

When I went for radiation treatments last year, I was terrified. I remembered my mother’s agony, how she would beg us to rub her back and how we did it so often for so long that we eventually rubbed a huge hole in the old navy blue cardigan she used to wear.

Thankfully, I suffered no side effects from surgery, radiation or other treatment. (I don’t have IBC, I have run-of-the-mill ER/PR+ HER2 NEU- breast cancer with a low volume of bone mets.)

In those pre-Internet days, there was literally nothing for women with IBC or MBC. General breast cancer information was restricted to large libraries or a few pamphlets from the cancer circuit rider AKA an American Cancer Society volunteer.

“In the mid-1970s, breast cancer was perceived very differently than it is today,” writes Barron H. Lerner. “There was no National Breast Cancer Coalition or Race for the Cure that encouraged women to talk about, and raise funds to control, the disease. Indeed, it was only in 1974 that breast cancer came out of the closet, with the highly public diagnoses of First Lady Betty Ford and Happy Rockefeller, wife of vice-president-designate Nelson Rockefeller. “

In the early 1980s, breast cancer was not daytime television fodder. “Mastectomy” was not a topic Merv Griffin, Mike Douglas, Phil Donahue or Judge Wapner broached. But in the early 1980s, it seems we had a perfect storm of launch vehicles for breast cancer awareness: Susan G. Komen for the Cure was founded (1982); Lifetime TV went on the air (also in 1982); and Oprah made her nationwide debut (1986).

You know what need now? How a little less awareness and a whole lot more UNDERSTANDING? Most breast cancer stories in print and on television make Horatio Alger Jr. sound as subtle as James Joyce. With luck and pluck, the brave breast cancer heroine carries on and ultimately kicks cancer to the curb.

Those are good stories. But that’s not my story.

Last November, I attended a panel discussion called “Many Faces of Breast Cancer: Living with Advanced Breast Cancer,” one of a series of national events AstraZeneca sponsored.

Dr. Sandy Goldberg, a nutritionist and weekend health contributor to NBC Channel 5, moderated the discussion. She told us she had experienced “everything you saw on the tape” referring to an AstraZeneca video featuring three women with metastatic breast cancer.

This set off enraged whispers in my row. Dr. Goldberg seemingly had an early stage cancer discovered in 2000. She did a 14-part, local-Emmy winning series on her breast cancer in 2002. But she apparently does not have metastatic breast cancer. It’s not clear what treatment she had, but at any rate it would seem her treatment ended at least six years ago. In 2002 she launched the Silver Lining Foundation to provide resources to those uninsured and underinsured individuals, often women of color.

According to the foundation’s 990 form, Dr. Goldberg receives a salary of $73,750 or 27% of the net revenues; $96,000 or 36% is spent on mammograms. The rest is spent on other administrative costs like rent, professional fees, salaries and benefits for those other than Dr. Goldberg.

The next day, we saw a student journalist’s online report. “The attendees wore mostly pink,” according to the student. “Some stuck to understated pink handbags or pink ribbons pinned to their lapels, while others celebrated in head-to-toe pink ensembles. They swapped stories, hugs and tears until the expert panel took the stage for the evening’s conversation.”

I spoke to six MBC women before the event began. We were all wearing earth tones: brown, black and perhaps olive green. None of us had any pink accessories. No pink ribbon pins. No one in my group hugged or cried and I observed no such carrying on as I looked around the room. I did see one elderly lady wearing a track suit which may have had pink stripes.

We are women with an incurable disease. Nothing said at this meeting offered any great epiphany. Maybe people were excited about the free food, but I found nothing to celebrate and there were certainly no high fives or fist bumps being exchanged in my corner.

Why would the student write something if it wasn’t true? She probably did see a couple of friends hugging. But, perhaps more likely, people have an idea of what breast cancer and breast cancer patients should be. They don’t like to let reality get in the way of a warm and fuzzy story.

We thought the presentation was going to focus on MBC. It didn’t. We complained to the organizers in person and later in writing. We felt brushed off.

Last October, my local paper featured a breast cancer awareness advertising section. All of the women profiled belonged to the “Treat it and Beat it” sorority beloved of reporters writing about breast cancer.

There was not a single word about recurrence. And yet, until a woman dies
of something else, there is always the possibility her cancer can come back, even if she was successfully treated for an early stage cancer and even if she completed her treatment as long as 25 years ago.

The special section had no insights for MBC women. The only oblique mention of Stage IV concerned a golf tournament named after a woman who died. Beyond the time, place and funds raised, we learned nothing further.

The day after Elizabeth Edwards died, “Today” show host Matt Lauer and Dr. Nancy Snyderman, NBC chief medical editor, recapped Edward’s cancer experience. Noting that Edwards was diagnosed with Stage 3 breast cancer in 2004, Lauer asked Snyderman about Stage 3 survival rates.

At no time, during their discussion, did Lauer or Snyderman mention that Edwards entered the metastatic ranks in 2007 and, in fact, died from metastatic breast cancer, AKA Stage IV.

Snyderman made it sound as though Edwards somehow died of Stage 3 breast cancer.

As if to avoid alarming Stage 3 women, Snyderman warned them not to compare their situations to Edwards’. She offered no such comfort to Stage IV women.

As the interview concluded, the doctor stressed the importance of mammograms and early detection. She said that the real issue is that we are still trying to figure out what causes breast cancer.

No kidding.

As we’ve previously observed, women with MBC literally don’t count. Some estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.

“One hundred and sixty thousand is an estimate only,” author and advocate Musa Mayer told Elaine Schattner last year. “Nothing more definitive is available,” she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between — in terms of recurrence and the exact number of women living with metastatic breast cancer — is undocumented.

“It is as if these metastatic women are invisible, that they literally don’t count,” she indicated. “And when we don’t count people’s needs, we can’t provide or plan for them.”

Why I am doing this? Because I refuse to be invisible.

I will be seen and heard.

I will speak up and speak out.

I will make a difference.

Two of my nieces with their grandmother's high school self portrait.

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More Cause for Applause

Earlier I wrote about MBCN,   a national, independent, patient-led, nonprofit advocacy group for people with metastatic breast cancer. Here are five other groups worthy of wider recognition. (What group(s) would you suggest? Leave a comment and let me know!)

Metavivor: Making a Difference for People with MBC

In June 2008 Dian “CJ” M. Corneliussen-James attended a breast cancer seminar with three friends. Numerous attendees rose in turn to celebrate their survivorship. They credited their status to being vigilant, courageous and  having the will to live. The moderator said it was wonderful breast cancer was no longer a secret and  invited all of the survivors present to stand.

“My friends and I looked at each other.  We were definitely ‘vigilant,’ we were certainly ‘courageous’ and our ‘will to live’ was absolute,” recalls Corneliussen-James. “But … no longer a secret?’ Survivors? We shook our heads. Those terms did not pertain to us.  Should we stand?  Should we speak out? It was clear this was going to be like so many other conferences.”

Corneliussen-James and her friends decided they would speak out. They formed Metavivor, a nonprofit, volunteer-run group. In addition to providing support and awareness for people with MBC, the group funds an annual research grant.

“We ask that the organizers of breast cancer conferences include speakers on metastatic breast cancer,” Corneliussen-James says.  “We ask that they have literature available on the disease and that they receive and respond in detail to questions asked concerning our condition.  We ask that in addition to applauding the 2.5 million ‘survivors,’ those valiantly battling stage IV breast cancer also be applauded.  And we ask that there is a moment of silence for the millions who have died of the disease. “Further, we ask that ‘survivors’ be sensitive when they speak at conferences and public forums and be ever cognizant of the fact that many do not survive this disease and persons struggling with stage IV breast cancer might well be in the audience. ”

When people are donating to cancer research, Metavivor asks them to consider supporting organizations that have a posted policy to award a specific share of monies received to research aimed at eradicating  cancer that has metastasized.

Last year the Annapolis, MD-based group raised $50,000 to fund the work of Dr. Danny Welch, a leading metastatic researcher who has observed that MBC accounts for 90% of the morbitity/mortality but gets 5% of breast cancer funding.

The Metavivor financial statement is  simple: $50,000 raised and 100 percent of those funds investedin MBC research. They are holding a fundraiser this week.

Driving Miss Darby: Supporting Clinical Trial Participants

In 2004, at age 34,  Darby Steadman presented with DCIS. In 20o7, she learned her cancer had metastasized.

Steadman participated in  Dr. Leisha Emens’ breast cancer vaccine trial several years ago at  Johns Hopkins.

“We (all the trial participants) were all at Stage IV by that point,” she said. “It was our last hope.”

Steadman lived within driving distance of Johns Hopkins, but many of her fellow trial participants traveled much further. “I  learned that many of them had maxed out their credit card bills to pay for their airline tickets, meals and car rentals,” she told a reporter. “Others commuted, five, six, seven hours each way and would head back the same day so they [could minimize time off from work].”

Steadman and her friends created the foundation  to defray clinical trial participants’ travel, lodging and medical expenses. The groups summarizes its goals as: Awareness, Accrual & Assistance.

Chronic Disease Fund Helps Patients Foot Their Bills

Established in 2003, the Chronic Disease Fund ensures that underinsured patients have access to the new, breakthrough medications and treatments that help patients live longer, happier, more productive lives.

Chronic Disease Fund quickly became the largest copay organization in the country. In 2009, it helped more then 60,000 people get the medications they needed.

The Abigail Alliance: Getting Promising New Drugs to  Market Sooner

Abigail Burroughs died at age 21 because she couldn’t get  an experimental cancer drug. After Abigail’s death, her father Frank Burroughs, formed the Abigail Alliance for Better Access to Developmental  
Drugs.

The Abigail Alliance is committed to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. It promotes creative ways of increasing expanded access and compassionate use programs.

The group was recently featured in what Burroughs calls one of the best pieces done on the group. The Abigail Alliance is the second interview at http://www.biocenturytv.com.

Sisters Network: Stopping the Silence

Karen Eubanks Jackson is the founder & CEO of Sisters Network Inc. (SNI),  the only African American breast cancer survivorship organization. She is a 15-year breast cancer survivor.

She created SNI  in 1994 in response to a lack of sisterhood in traditional organizations, a staggering breast cancer mortality rate for African American and limited culturally sensitive material.

Jackson’s primary motivation was to break through the silence and shame of breast cancer that immobilizes African American women, restricts their ability to receive support services, interferes with early detection, and ultimately affects their survival rates. SNI currently has 42 survivor-run affiliate chapters, serving more than 3000 members and associate members nationwide.

The 12th Annual National African American Breast Cancer  Conference will take place May 12-15, 2011 in Baton Rouge.


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MBC Mavens Jane, Nina & Ellen

Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network  (MBCN) in 2004.

Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.

“Meeting Nina in 2006 changed who I was,” says Ellen Moskowitz, MBCN’s volunteer president for the past five years. “Nina would not accept being ignored by the breast cancer community and believed we need to be our own best advocate through education. People, need to know we are here—155,000 of us living with metastatic breast cancer in the U.S.– the entire breast cancer community needs to embrace all of us with breast cancer, not just those who may think they are cured.”

Moskowitz says joining MBCN and working with Nina gave her a purpose. “I developed pride in being able to reach out to so many,” she recalls.   “I  experienced a very satisfying feeling of empowerment.”

According to Moskowitz, Schulman “would rant when other breast cancer organizations would once yearly light a candle for all who died that year and then go on with business as usual–business that excluded doing anything to meet the unique needs of our population.”

Schulman wanted people to  know that although many are still dying too soon, “many people with MBC are living longer and stronger,” says Moskowitz.  ” We should not be [dismissed] with the thinking that ‘they will die anyway.’  Nina was determined that our programs, our brochures, our website all represent hope. She would not allow any aspect of death. She didn’t want candles lit or moments of silence in remembrance…She wanted everyone to focus on keeping us alive!”

Prior to 2004, there were no very few metastatic support groups. “There was no mention of MBC during pink ribbon month, no talks on mestatatic disease at any cancer conferences, no nothing!”  Moskowitz says. ” We were completely and totally hidden away and frequently made to feel we just didn’t fight hard enough.”

(Update: After the original post  Marie Carmel reminded us the IV League in Austin, TX was founded in 2002. Find them on Facebook, too.  For more support groups, including a list of regional groups, see http://mbcnetwork.org/support-resources/category/support/)

Marie Carmel Our Stage IV group was founded in 2002. Yes, we were hidden and we had to fight for our survival, both as cancer patients and as a support group. … but we did exist.

43 minutes ago · 

 

After more than five years of volunteering with MBCN, Moskowitz recently stepped down as president. “We started with 30 members and now have close to 2,000 members across the country and scattered members across various oceans!” she says. “Our new president is Michele Przypyszny and I know she will work hard to grow our mission and connect with you.”

Moskowitz is proud of the projects she completed with the help of other MBCN volunteers. She teamed with volunteer Suzanne Hebert to plan, organize and edit the pamphlets in the MBC kit. She credits volunteers Shirley Mertz and Susan Davis with leading MBCN’s successful drive to have both the House and Senate declare Oct. 13 National Metastatic Breast Cancer Awareness Day.

“All of us made that happen,” says Moskowitz.  “The previous the years of members reaching out to their mayors and governors to proclaim the day set the stage for the House and Senate to do their part.”

Moskowitz is also enthusiastic about the recently launched MBCN website. Volunteer Ginny Knackmuhs led this effort which represented more than a year of planning and ongoing work.

What’s on Your To Do List?

At   www.mbcnetwork.org you can:

>Order a metastatic kit (brochures).

>Request a t-shirt to wear when you do cancer walks.

>Watch the videos from our conferences.

>Take a look at metastatic events–maybe there is something in your area.

>Read inspirational stories.

>Share your inspirational story.

>Check the latest MBC news.

>Contact your local newspaper and request they do an informational piece on MBC.

>Encourage your cancer center to start a metastatic support group.

>Become a member of MBCN and let Michele know if you have a particular skill or interest to volunteer.

The last word

“We need to keep this awareness growing,” Moskowitz says. “We need to speak up and not allow MBC to be put on the back burner. We need to ensure that National Breast Cancer Coalition (NBCC) includes research to STOP metastatic spread—and not just to prevent metastatic spread. So much has changed for us since I was diagnosed.  I am so proud to have been a contributing factor to this change. We are bonded and our voice is louder than ever–we are actually being heard!”

Keep in touch

Membership in MBCN is free. Signing up at  www.mbcnetwork.org ensures you’ll be on the mailing list. Look for more details  on the next National Conference soon.  For more details send an email to  mbcn@mbcnetwork.org.

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Cancer patients commandeer pink bus for 3-day joyride

I was diagnosed with metastatic breast cancer in 2009. “When will you finish treatment?” is a popular question as is “What’s the prognosis?”

These questions aren’t dumb—unless a person has MBC or had some direct experience with it the general assumption is that you have treatment, finish with it and maybe have some follow-up program. That’s how it works with early stage breast cancer and the average person probably doesn’t realize MBC isn’t the same thing.

Some doctors do say MBC is “like a chronic disease.” For some women that’s a fair comparison, others, not so much. Everyone is different.

Now, in terms of truly dumb…..

What’s the deal with getting hit by a bus? It’s true that life is uncertain. But telling someone “Well, you never know, you could get hit by a bus,” is scant consolation.

Another Stage IV woman said metastatic breast cancer is like getting hit by a bus…but being stuck to the grille as the bus keeps going.

Inspired by Susan G. Komen, I have proposed that the 155,000 people in the U.S. with metastatic breast cancer rent a bus. Instead of the three-day walk, we will have a three-day bus ride in which random pedestrians will nearly get hit by our pink bus.

We would then let them get on the bus and tell them well at least they weren’t diagnosed with the proverbial metastatic breast cancer. We would then refuse to let them actually get off the bus, but tell them to think positively and be strong and perhaps everything would ultimately work out all right…

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