Summertime and MBC

It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

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In Our Shoes: Raising the Voices of MBC Patients

Well, this is LONG overdue, but I’m finally feeling up to using my chemo-addled brain again! You may remember (or perhaps you never even knew) that last spring I conducted a survey of metastatic breast cancer patients. As I’m sure you’ve heard me say before, we are patients who often fall through the cracks when it comes to breast cancer advocacy. Sometimes we scare people, sometimes we don’t fit the mold, and sometimes we are forgotten – or pushed aside. As patients, we know our stories are hard ones to hear, but as so many advocates will tell you, there is no breast cancer advocacy without MBC advocacy.

Do You Know What Your Trial is Doing?

Clinical Trials – the path to new drugs and device approval by testing them on humans. As I’ve become increasingly involved in the research side of breast cancer advocacy, I’m often called upon to explain trials – what they are, how they work, and why they are necessary. It is, in my opinion, a critical roll played by advocates who advise researchers through the trial process.

Define. Recruit. Support. Disseminate.

Why Advocate?

There are times when I feel like I spend more time on breast cancer advocacy than I did on my half time job. It’s probably true…

So in the midst of my own almost-but-not-quite stable disease, why the long nights of reading grants, long days of travel and meetings, the long talks with researchers, the long days or planning, grant-writing, networking, and whatever else quickly fills my days? 

I recently closed a study that will serve as the basis of an abstract and poster entitled “In Our Shoes” and will seek to raise the collective voices of metastatic breast cancer patients around living with our disease. One respondent’s comment about how finances impacts her family offers the best possible answer for why I do what I do. 

I also know that the sooner I die, the more money my family will have. 

#Heartbroken

Of Ice Buckets and Silent Patients

Barbara Brenner, the first full-time Executive Director of Breast Cancer Action was a 2-time cancer survivor who died of ALS. Even when her voice was silenced by the disease, her writing continued to educate and inspire. She never stopped asking the tough questions, and persisted in her demand for answers. She is missed.

Even as our Facebook feeds rapidly fill with videos of some very cold people (as well as some Three Stooges-grade comedy), the controversy of the ALS Ice Bucket campaign is being challenged.

My take: people have done stranger things for a cause – buying and using carcinogenic products for “the cure” comes to mind. 

Wasting water? Some – yes, absolutely. But I’ve also seen friends stand in a pool and use pool water so that everything but what soaks their clothes is recycled.

Taking away from other charities? That could be. But if you didn’t know before, you probably do now – ALS is devastating. It is like dying from within. While your mind stays sharp, your body parts lose function – use of limbs, voice and even the ability to breathe are inevitable with this disease. I haven’t looked at the numbers in depth, but the ALS Association is well-rated and regardless, the needs of those living with ALS are most certainly worthy.

Are there better fundraising options? Probably. A campaign that will sustain the new funding levels would probably be the ideal option. And that may come. For now, the infusion of over $15.5 million dollars can, if used well, make a meaningful difference.

For me, here’s the biggest issue of all: while practically everyone has heard of Lou Gehrig’s disease, I fear too few of us knew what it was before the Ice Bucket Challenge began. Patients aren’t out and about much, and it’s easy to forget about them. Awareness and education, and helping ALS patients share their voice and their stories matters. It matters a great deal.

You probably know I’m not a huge fan of “awareness” campaigns – I do feel strongly that they need to be tied to action. As a person living with what is often referred to as a “bully disease,” I recognize that there are many levels of awareness. While we are all of breast cancer, inflammatory breast cancer, metaplastic breast cancer and metastatic breast cancer (to name a few), typically remain shrouded, and are not given the attention the severity of these diseases demand.

So, the ice water part is all in fun, but let’s pay careful attention to the heart of the matter: giving voice to patients and supporting an under-funded disease. If you don’t know what it’s like to live with ALS, please watch this video: 

An N of 1

impglobal.org

The most recent roller coaster ride seems to be coming to an end, though that sounds remarkably like “famous last words” – never good!

For those keeping score, here’s the update:

About four months ago I started on my third-line treatment – everolimus and exemestane. I started the treatment with trepidation. After nearly three months it seemed, to me, that I wasn’t seeing the results I wanted. Tumor markers were rising (that’s not good) and the side effects weren’t great. So I started looking for “what’s next.” Time to look at my options – clinical trials.

Breast Cancer Advocates: Five Minutes of Your Time, Please…

I am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.

The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.

Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!

Thank you VERY much in advance!!

Vast Study Casts Doubts on Value of Mammograms – NYTimes.com

Vast Study Casts Doubts on Value of Mammograms – NYTimes.com.

Our Seat at the Table

This is going to be one of those posts that’s going to get me in hot water. That’s ok – I’ve been there before!

This week is the annual San Antonio Breast Cancer Symposium, perhaps the largest and most noteworthy of them all from which emanates some of the biggest Breast Cancer headlines. The magnificent Alamo Breast Cancer Foundation provides a truly INCREDIBLE service to advocates (even above and beyond their scholarship program) by bringing together top people to summarize the day’s headlines. Tonight’s “mentor session” was live-streamed thanks to Dr. Jay K. Harness at BreastCancerAnswers.com.

As always the presentations and questions were outstanding. One sparked a little discussion in the twitter feed.

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I find it interesting that the patient track at breast cancer medical conferences always seems to start before the conference. So it was yesterday, when Novartis kicked-off the patient conversation. I am guessing about 60 of us, patients and advocates, representing 20 or more countries, met to learn more about living with metastatic breast cancer, and to talk about the challenges.

Novartis supported the international Count Us, Know Us, Join Us study (n=1273). It was fitting to share the results, such as they were, at the Advanced Breast Cancer Second International Consensus Conference, since in some way the need to count us was on the table two years ago when the conference launched.

This online, global study sought to explore the unmet needs and attitudes of metastatic (or advanced or secondary or Stage IV breast cancer patients) in an effort to identify gaps in information and support:

40% of MBC patients feel isolated.
77% are out there trying to find information.
55% feel that the information they find doesn’t meet their needs.
45% feel finding the right information is difficult.

In terms of support, 80% get what they need (I speculate that they are confusing need and expect, but who am I to judge?) from their oncologist, but most find that support from friends and family wanes over time.

No surprises for those of us living with the disease, and there was lots more. Each geographic region gave a localized report about this or other surveys that have been conducted. You can find results on the Count Us, Know Us, Join Us website.

While is seems that everyone is interested in us, remarkably, they actually haven’t counted us. Seriously. We don’t have global, or even local numbers and we don’t have registries (except in Switzerland) that track mets-specific diagnoses. And as MBCN President Shirley Mertz put so well,

“If you don’t count it, it doesn’t matter to you.”

Any wonder some of us feel isolated? Lots of work to be done here!!

After a series of briefings about the “on the ground” experiences and “best practices” from across the globe, we meet in regional teams to begin the work of tackling the challenges we each face. It was a wonderful opportunity to connect with other patients and advocates and be infused with new ideas. There is no question the task is great, nor that each region faces its distinct challenges, but there is more overlap than not. Here is the summary I presented on behalf of the US/Canada team:

What We Need

• Influence legislators to ensure research funding
• Increase percent of research dollars allocated to MBC-specific studies
• Change approach of health care professionals to be more “realistic”
• Insure patient access to information and support
• Organizational collaboration
• Breast Cancer on a spectrum (previvor – metastatic)

How We Get There

• Global Day of Action
• Continued Advocacy
• Adapt registries to account for (subsequent) mets diagnoses
• Pink ribbon needs to be longer, gradations of pink

All in all a very productive 1/2 day, but as usually I find the follow-up steps lacking. What we do with our ideas, how they become actionable, where the support might come from? We don’t ever seem to get to that part of the conversation. :-(.

In all the thinking I’ve done about advocacy in general, I find this to be a core challenge. It’s one thing to bring information and contacts back to your organization for future reference, but perhaps because I don’t have a single “home” organization, perhaps because I haven’t started my own non-profit to cover my one little corner of identified needs, I don’t think this is enough. I wonder what happens in the big picture and I worry about how many brilliant ideas get lost when we return home and the luster begins to fade…