MBC Needs You!

Whilst at the National Breast Cancer Coalition's ("NBCC") recent conference, I had the opportunity to attend a meeting for women dealing with metastatic breast cancer ("MBC").  There were about forty women in attendance.

The meeting was similar to in-person support groups, where we all went around the room and introduced ourselves.  I started off and gave my age, and talked a little about my blogging activities and my feelings about having MBC.  As we proceeded around the room I noticed how much more detailed everybody's introductions became, expanding to include detailed  MBC diagnoses and also their primary diagnoses.

What struck me was the number of women who revealed they were originally diagnosed at Stage I and went on to develop MBC at a later point.  Surely this unscientific observation alone is a stark and serious reminder that MBC can happen to anyone.  Regardless of stage at original diagnosis.  In fact, Dr Susan Love, noted author, and founder of the Dr Susan Love Research Foundation and the Army of Women, discussed in the workshop that I attended, that the Staging system is in her view obsolete.  Staging is not a predictor of survival.  Molecular biology of cancer cells and the cell micro-environments trump staging hands down.

Here in this room, was living evidence of Dr Love's theories.

The women in this room came from all walks of life and all age groups, although I think fellow blogger @whymommy and I were the youngest.

Each of the women in that room,  I would describe as strong, feisty, intelligent and mad as hell about the state of  MBC advocacy and research.  We understood only too well when someone said "We need to be our own advocates".  There was a resounding "Yes!".  But then, someone else added this comment:

"But, as well as being our own advocates, we need the rest of the breast cancer community to advocate for us as well".

"YES!!!!!!!!".

It seemed so simple, but then I thought about it and I realized that this is something that is not happening on a wide enough scale.  Why?   MBC advocate Musa Mayer presented some thoughts on this issue during one of the NBCC workshops.  Musa says;

"Very few advocates focus on MBC-- WHY?":

• Avoidance:  Vast majority of advocates are primary breast cancer survivors at risk of recurrence. "We are what the pink crowd wants to forget because we are the painful reminders of what can happen"

• Expertise required:  Lack of knowledge about complex MBC treatments and the different issues that women with MBC face

• Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing

• Screening and early detection still a primary focus

• Naivete and fatalism both play a role

I'd like to add a few more thoughts to expand Musa's list and perhaps highlight why I think it's so important that we also draw advocates from outside the MBC community.

• Reduced Priorities:  Many of us are struggling with grueling treatment regimens, and our energies are focused on just staying alive and trying to enjoy our lives as best we can.  It's incredibly difficult to find the room to expand our priorities and the time to focus.  In some respects it literally comes down to focusing on what's important from an individual perspective as opposed to a collective view.

• Succession:  Let's face facts.  Our community is made up of people dealing with incurable and mostly terminal illness.  We are all too painfully aware that our time on Earth is limited.  Who's taking the reins when we are gone?  Do the issues simply die with us?  

It's clear to me from my forays into social media and many of the online discussion forums that there are deep chasms within the breast cancer community itself.  Many people who have known a breast cancer diagnosis seem to view attempts to question the status quo,  as being simply angry, negative, bitter or just plain mean-spirited.

The armchair psychologist in me tends to think that this kind of reaction seems to come from people who believe themselves cured of their cancer.  They seem to have adopted the notion of survivorship with such celebratory fervor and zeal, that they tune out any information that may possibly lead them down a path that is personally confronting and contradictory to the culture which they have felt embraced by and have embraced in return.

Trust me when I say that I get it.  But the trouble is, by refusing to entertain an alternative viewpoint we just feed and maintain the status quo.  And for the MBC community the status quo means;

• no significant decreases in mortality in decades; 
• rates of MBC diagnosis that have remained constant for more than 40 years; and
• incremental drug treatments whose "success" is judged by survival in weeks and months;
• very little research funding and focus; and
• disease which is incurable and responsible for 90% of breast cancer deaths

I'm thankful that we have some key organizations helping the MBC community to mobilize and advocate, including MetaVivor, Metastatic Breast Cancer Network, and AdvancedBC.org, to name a few, and links are listed on the right side-bar.  Indeed, the NBCC is also chairing a Metastasis Prevention Summit in August, which has drawn some criticism from the community as to the specific agenda, but I'm hoping to see some action items that might benefit people already dealing with MBC, in addition to benefiting those yet to be diagnosed with MBC.   There's also going to be an Advanced Breast Cancer International Consensus Conference to be held in November in Lisbon which will be addressing many issues related to MBC.  (Incidentally, there are reduced registration fees for patient advocates wishing to attend this conference).

But we need more.  We need a critical mass of advocates for MBC, and we need to draw people from outside of the community.

Here are some ideas of things you can all do to help advocate for MBC:

• Join the mailing lists for all these organizations and stay up to date with MBC news and initiatives, and share it with your communities
• Join Dr Love's Army of Women and participate in research. (It doesn't matter where you live in the world!)
• Attend conferences and  workshops relating to MBC.  Get informed!
• Donate to organizations that support research and advocacy for MBC (see list on this blog)
• Get active in social media.  Start blogging, tweeting, or join Facebook and/or simply start participating in online discussions.   MBC represents an alternative viewpoint and we need to get it out there. Have an opinion and share it.  Every voice matters. 
• Question, question and keep questioning.  Don't be afraid to dissent; this is what generates discussion.  Just be heard.
• Most important of all.  Don't ignore MBC.  The community needs your support and every little bit helps.

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This post is dedicated to my Twitter friend Sarah of @sprucehillfarm  who passed away last night from metastatic breast cancer.  RIP gorgeous lady, I will miss our chemo-day tweetups.  How many more?  

  

My Girlish Dream

No shovel but a dream trip regardless. Egypt, April, 2005

When I was a kid I had big dreams for myself.  At the top of the list?  Archaeologist.  And me excavating a previously undiscovered ancient Egyptian tomb.  Whilst some kids were setting up lemonade stands in their front yards, I had a backyard museum.  It was full of things that I'd gone digging for in our garden.  I found some cool stuff too.  A little leather purse with pennies in it, broken bits of china, and okay maybe a couple of things swiped from my Dad's antiques collection.  Anyway if you wanted to see it, you had to pay the 10-cent entry fee.  I sat out there curating my museum all weekend.  I made about 50-cents thanks to my Dad's friends who generously indulged my silly childish fantasies. "Look but don't touch", I told them!

But as the years dragged on and I became slightly more cynical and, some might say realistic, my dreams changed.  I went from Archaeologist to Hospital Administrator.  I remember looking it up in my tenth grade book of careers.  Imagine being the boss of all those people?  The perfect job for the ultimate Leo and also strangely ironic with the benefit of hindsight.  I'm not sure what happened to that idea but it went by the wayside, along with another girlish dream of becoming a Librarian.  Who doesn't love the smell of old musty books?  Just ignore the nerd-alert at this point please!

Alas, instead of slugging it out in trenches of Ancient Egypt, I ended up becoming a public accountant.  Horribly boring and dull but it suited me down to the ground.  As you know from this blog,  I love a good data based rant any day of the week, and I never met an argument I didn't like, so really public accounting was the perfect situation for me.  I loved getting into the tax code, researching case law, writing argumentative memorandums and going fisty-cuffs with the tax auditors.  And then there was financial statement preparation.  Ahhh....blissful days of tabulating, analyzing, and collating.  I really did love it.

Then amidst my dream career, came breast cancer.  And nothing like a good dose of breast cancer treatment to put a major dent in your career, and indeed the visions for the rest of your life.

Now that I'm dealing with metastatic breast cancer, and undergoing a rather grueling treatment regimen, I find that my career options are somewhat limited.  Of course there's blogging which I seem to have taken to like a CPA jacked up on international tax code loopholes. And then there's the career that I never would have envisioned for myself in a gazillion years.

GUINEA PIG.


You see in chemotherapy drug development the process goes something like this:

Preclinical Screening

• Animal and laboratory testing      
• Can take 10-15+ years
• ~40,000 chemicals screened each year; ~25% are selected for preclinical screening; ~10% are tested in phase I, human trials.

Phases of Clinical Trials:

• Phase I:  Specific aim is to determine toxicity and maximum tolerated dose.
• Phase II:  New drug is studied in a specific tumor type to determine response and further define toxicities.
• Phase III: New drug or treatment is compared to standard therapy to determine superiority.
• Phase IV: Post-marketing trials to further evaluate in larger numbers of patients.

From listening to prominent metastatic cancer researchers Pat Steeg and Danny Welch speak at the National Breast Cancer Coalition's recent conference, this is what I understood (and please readers feel free to chime in if my understanding is incorrect in any way).

I learned that chemotherapy drugs are almost always  developed using primary breast cancer tissues and then are tested in Phase I and II trials on metastatic cancer patients.  If the metastatic tumors remain fairly stable or shrink by a certain number, then the drug  moves to a randomized trial phase where "survival" is measured.  In the metastatic testing setting survival is measured in weeks or months and this is how "success" is defined.  From there the drug moves to next phase into the adjuvant setting and evaluated on a much larger group of patients.


It's only at the end of the drug development phase that any outright prevention of new metastasis is looked at and assessed.  BUT, for a drug to progress through the clinical trial phases, it must show that is has shrunk established metastatic tumors, NOT necessarily prevented new metastatic tumors.  In the words of Pat Steeg, "THIS IS STUPID!".    In the metastatic setting, the way the drug developments and approval phases are currently structured, drugs specifically designed to address metastasis, a biologically different animal to primary tumors, are destined to fail.  Because the aims of the drugs that the metastatic researchers like Danny and Pat are focusing on, are those that will induce metastatic tumor dormancy NOT necessarily shrink existing tumors.  Real prevention!

So just to recap.  My value to the drug development process right now, is as a guinea pig.  To have drugs tested on me, that are developed with the intention of treating earlier stage breast cancer.  Not specifically metastatic breast cancer.  The drugs may or may not work on me.  If they do work, most likely only for a finite period of time.    My outcome in treating my metastatic breast cancer is simply an (un)lucky by-product of the current drug development cycle.

Guinea pigs.  NOT GOOD ENOUGH.

I also learned from Pat Steeg that there IS a robust pipeline for secondary metastatic prevention drug trials.  But with the current structure for drug development and the associated incentives and funding costs, getting these drugs into clinical trials is a fight.  Besides bureaucratic red tape, the roadblocks to metastatic-specific drug development are immense.

We are entrenched in a breast cancer culture that favors research for primary and early stage breast cancer.  There is a dearth of metastatic breast cancer tissue available for research; most metastatic breast tumors are not biopsied because it's considered too invasive and unnecessary.  We don't know exactly how many people are living with metastatic disease as we are not officially counted anywhere.  How can the needs of our population be properly assessed and researched? Metastatic research is seen as to difficult and complex making funding grants hard to come by.   Big pharma must work to a business model to appease its shareholders, and metastatic cancer research is way down on the priority list because of the lead times and costs involved. And so the excuses pile up........

All of these roadblocks, yet around 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease(1).  And metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year (2). And with less than 5% of cancer research funds spent globally on researching metastases (3), is it any wonder that, according to Danny Welch,  there are less than 1000 metastatic researchers worldwide?

How can we scream loudly enough that:

IF WE SOLVE THE RIDDLES OF METASTATIC BREAST CANCER THEN WE CAN ALMOST ELIMINATE MORTALITY FROM THIS DISEASE!

WHY THE ROADBLOCKS?

I'm not sure who coined the phrase first, but I've  been hearing it loud and clear from U.S. based metastatic breast cancer advocates like Musa Mayer of AdvancedBC.org, CJ Corneliussen-James  of MetaVivor and Ellen Moskowitz of Metastatic Breast Cancer Network.

What we need is this:

30% for 30%*

 

*30% (research funding)  for 30% (of the breast cancer population who will develop metastatic breast cancer)

Again I will quote Pat Steeg:  "Do we care enough to study mets?"

I certainly hope so, because I don't want to be an (angry) little guinea pig for the rest of my life. Well that's my girlish dream anyway.

(1) O'Shaughenssy, Oncologist 2005; 10(suppl 3):20-29
(2) Metastatic Breast Cancer Network
(3) J. Sleeman, P. Steeg, "Cancer metastasis as a therapeutic target", European Journal of Cancer 46 (2010) 1177-1180

Trying to Stay Alive on Two Percent

Since the New York Times published its recent article, A Pink-Ribbon Race, Years Long, and with the passing of Elizabeth Edwards late last year which attracted huge media attention,  metastatic breast cancer is having a spotlight moment of sorts.  And not before time.

The current level of research for metastatic breast cancer (and other metastatic cancers) is abysmally limited both in the United States and the rest of the world, despite metastases accounting for the majority of cancer deaths.

Today, I introduce you to guest blogger, "CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, who weighs in on the current state of metastatic breast cancer research and support, and a possible way forward.  This is not the breast cancer story we normally hear, and I hope you'll agree, this is a powerful and eye-opening article, which I urge you to share with your community.

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Trying to Stay Alive on Two Percent

by CJ (Dian) Corneliussen-James, President, METAvivor Research and Support, Inc.

My interest in the allocation of cancer research funds began January 13, 2007 ... the day I learned that only 1% of the $5 billion annual cancer fund was devoted to any stage IV cancer, despite the fact that stage IV causes 90% of cancer deaths.  I had just been diagnosed with metastatic (stage IV) breast cancer, or "BC mets" as we tend to call it, so the statement really hit home.

The stage IV research fund allocation is now considered closer to 2%, but that is still minuscule and breast cancer is a subset of that.  One might think breast cancer organizations would look after their own stage IV community.  They do not.  The vast majority of their funds go into prevention and early detection.  Their few so-called metastatic breast cancer research grants are often aimed at preventing breast cancer from metastasizing, not at finding solutions for those already at stage IV.  For this reason all the millions poured into the disease have done nothing to change the fact each year 73,000 - 86,000 Americans are diagnosed with terminal breast cancer and close to 41,000 die of the disease.

These and other facts are not well known.  The media, cancer organizations and drug companies prefer not to recognize our existence except to highlight an individual now and then as a stellar example of positivity and health despite their disease -- hardly the typical person with stage IV breast cancer.

The only ones trying to rectify this situation are non-profit organizations run by patients, working out of their homes as volunteers, dependent upon hard-to-get donations and grants and trying to get someone outside the metastatic breast cancer community to listen.  How many non-profits are doing this?  I know of only two.  METAvivor Research and Support, Inc , of which I am President, and Metastatic Breast Cancer Network, directed by Ellen Moskowitz.  Upon meeting Ellen in 2008, we quickly agreed that any duplication of effort was a complete waste of time, energy and money.  So we work as complimentary organizations with METAvivor targeting research, support and awareness and MBCN targeting advocacy.  We lend each other support, encouragement, advice and friendship.  Progress has been slow, but we have made some headway.

METAvivor awarded its first research grant in January 2010 and we are very pleased with the results. We could do a lot more with an increase in donations, but we work hard to put our small grants to good use.  METAvivor is willing to fund the out-of-the-box ideas ... the ideas others will not touch.  We do this in the hope that at the end of the year the results can be placed in a nice, neat package that appeals to the "big bucks" organizations, which will hopefully pick up these projects and fund them to completion.  METAvivor also promises something promised by no one else.  We put 100% of every research-designated donation into our research grant because what we want more than anything is a solution that will allow all stage IV patients to live without the constant knowledge that each year could easily be their last.

Why are other organizations not funding stage IV research?  Here are my thoughts:

1. Image and Turn-Around:  Grant-givers prefer projects of short duration with a relative certainty of success.  That is good for the image and encourages future donations.  Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

2. They are Getting Away with It.  Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer.  The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public.  Even those who know the truth keep giving, including some of those dying of the disease.  They are caught up by the glamour, the big names and the enticing events.   There is no need to take the difficult road.

3. Money .. Money .. Money.  Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed.

What would METAvivor do if money were not an issue?  No question there.  We would convene a conference and bring together the world's premier, career metastasis researchers to develop a 20-year collaborative plan aimed at eradicating death from stage IV breast cancer.  We know this is possible .. we need only the funding.

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Brief Biography:
After spending 24 years as an Air Force Intelligence Officer, "CJ" (Dian) Corneliussen-James, retired as a Lieutenant Colonel and took a Senior Analyst position in the Defense of Defense.  Slowed down by the diagnoses of both metastatic breast cancer and systemic lupus in 2006, she retired from the government but was soon busy running a support program for metastatic breast cancer.  Her quest to fund much needed research for the disease led to the establishment of a 501(c)(3) non-profit organization, METAvivor Research and Support Inc., of which she is President.   CJ lives in Annapolis, MD.