Report: LBBC’s Annual Conference for Women with Metastatic Breast Cancer

I have attended a lot of conferences over the years.  Growing up I would watch television shows that featured story lines of men going away to “conventions” (for which their wives packed, of course) and getting into all sorts of trouble.  Sloppy drunk, affairs with stewardesses or a wanton career woman who was anything but moral.  My experiences have been nothing like that, though there was the time I saw the famous and naked Egyptologist passed out face down drunk and naked on the bed with the curtains wide open.  But I digress.

Now, I’ve been blogging some nine months now and I’ve had the privilege of having formed global friendships on all corners of our beloved planet.  So when I learned of Living Beyond Breast Cancer‘s  two-day Annual Conference for Women Living with Metastatic Breast Cancer I was really intrigued.  I knew I would have the opportunity to connect with some virtual friends and  to make new ones. And honestly, before this conference, every women I had met with breast cancer was not metastatic.  I needed to meet and bond with my people.

If you have never attended a conference of any kind, it was structured in a familiar fashion: plenary speakers were scheduled at the beginning and end of the first day, and a closing plenary in the second day. Two workshop sessions took place on the first day, and one on the second day.  And before each plenary a woman with breast cancer was invited to speak to the audience about their experiences.

The Plenary Speakers
The conference’s opening speaker, Andrew Seidman, was impressive.  His talk on advances in the care of metastatic breast cancer was informative, intelligent, and respectful.  Dr. Seidman didn’t talk down to this audience.  The tenor of his presentation revealed that he knew this audience well–women who knew their disease front to back and sideways.  The talk was dense with information on “smart bomb” therapy and dramatically highlighted the level of research that goes into the treatment of this disease and underscored the critical need for increasing government funding in disease research.  Dr. Seidman, who argued that a good oncologist applies the science he knows artfully, also drew attention to the importance of preserving the environment as everything from plants to sea sponges (the Helichondria Okadei to be specific) yields advances in the treatment of all disease, not just breast cancer.

The second plenary of the day was Wendy Lichtenthal, who spoke to finding meaning in life as you lived with cancer.  I heard mixed responses to this talk, but I must say that from a philosophical perspective I thought it was spot on. For me, blogging has enabled me to see my disease and my place in the world with crystal clarity–and this is not an understatement.   Lichtenthal drew heavily on Viktor Frankl who, in his book Man’s Search for Meaning (1946) argued that meaning is found in every moment of living; life never ceases to have meaning, even in suffering and death.  Like my favorite philosopher Marcus Aurelius, Frankl’s focus is on the mind and reason, that no matter what the state of the world our attitude can make or break our life experience. The Stoic Epictetus held that “men are not moved by events but by their interpretations.”  Even in facing death and suffering, by showing courage we can turn a situation into a supremely meaningful one.   She was clear to emphasize that her talk was not to put forth, as she put it, “the tyranny of the positive attitude.”  Indeed, it was not.  The philosophies put forth by the Stoics and Frankl is not a recipe for how to make lemonade.  It’s the view of where we are in relation to the lemons that shapes our view of the world.  It’s the idea that we are part of something much bigger that brings meaning.

The final plenary, on the final day of the conference, was a talk by Bob and Linda Carey on The Tutu Project.  I am fatigued with one organization after another popping up to spread awareness, but I did learn that their fundraising efforts go toward helping those with needs that their insurance does not cover, whether it be transportation  in home care, etc.  Linda Carey, like the women in attendance, is living with metastatic breast cancer and Bob’s mother died of it.  So I gained a new appreciation for their efforts. The images Bob shared were both touching and enjoyable.

The Workshops
Oh, yeah, the workshops.  Well, they were, from my perspective, wanting.  I will say this:  let the speakers speak for crissakes.  Workshops aren’t for your personal diagnosis or situation.  As I tweeted during the workshop for “Treating Hormone Receptor-Positive Metastatic Breast Cancer”

Capture

Here’s the thing: this respected physician and speaker, Joanne Mortimer, had a lot of interesting things to say, but it would have been so much more valuable if the format of the talk had not been handed over to the audience to interrupt with their questions. These questions often betrayed the impatience of individuals (“Will You be talking about X?) to asking for a personal diagnostic (“When I was diagnosed my doctor did X, and would you do that too?”).  Folks, these are not workshops tailored to your personal situation, they are meant to speak broadly about a topic unless the workshop description says otherwise (and this one was pretty clear).  At lunch the women at the table were really annoyed that the audience was permitted to take over as they did.  Indeed, as this same speaker rose to speak for the “Bone Mets” workshop in the afternoon and once again said she invited people to interrupt with questions, I emitted an audible, “Oh no” and walked out of the room; I couldn’t take another hour of personal diagnosis.

So I tried to find a workshop.  Clinical Trials was full–not a seat in the house.  “Creating Your Legacy” was open.  After the speaker, Wendy Griffith, spent most of her introduction speaking to work she conducted with pediatric patients and hand prints, I walked out.  This is an audience of women with metastatic breast cancer, we’re not going to be making hand prints.  FOR THE LOVE OF GOD: KNOW YOUR AUDIENCE!

And then I settled into “Foods to Boost Your Immune System and Fortify You Everyday.”  Debra DeMille, from the University of Pennsylvania, gave an engaging presentation on foods that can enhance immune response and how to eat well when you are undergoing treatment and you don’t feel like eating at all.  She was thorough and patient as the audience–one person in particular–was vocal in challenging and questioning just about every point.  If you know it all, then don’t go to a conference.  Really, what else have you left to learn?  Why are you here?  You probably did your own lumpectomy and administered your own chemotherapy.  Maybe you should give a workshop.  Better yet, write a book.

The final workshop that I attended, “Lung and Liver Metastasis,” was led by Minetta C. Liu.  Although she invited the audience to ask questions, she kept control of the talk and kept personal diagnostic questions to a minimum with grace and humor.  As the talk came to an end, personal diagnostics bubbled up furiously and it was time to go.  I can understand the desire to understand your personal disease processes more, but this just isn’t the forum.  Especially since Dr. Liu stated that she would stay after the workshop if people had individual questions.

The Value of the Conference for Me
This conference was valuable for me in the sense that I was able to connect with women caught up in the same experience.  I was also able to speak with a number of caregivers–husbands, sisters, and friends–and get a sense of the responsibility they feel and the unique challenges they face.  Indeed, I hope to speak to some of them for a future post.

Attending gave me validation that a woman can live with metastatic breast cancer and have a good quality of life.  At the beginning of the conference Jean Sachs, CEO of LBBC asked for those in the audience to clap if they were one to two years out with their diagnosis, then three to five, six to ten, ten to twenty–the applause associated with each category waned as the years increased.  In one sense it was a reminder that you may not be okay at some point in this process, but even with that stark reality I was still buoyed to meet so many women living with this for some years.

As I checked into the hotel, I came upon a young woman in a wheelchair who was receiving oxygen via a nasal canula.  Hotel staff were transporting her oxygen machine and spare tanks of O2 to her room along with her luggage.  I suspected she was here for the conference (and I did eventually see her throughout) and it sparked two emotions: anger and fear.  Anger that this could happen to anyone, especially someone so young.  And fear that this, too, could be me.   In addition to this individual (who I never had the pleasure to meet formally), I became acquainted with many women experiencing lymphedema.  To think that treatment for this is still not always covered by insurance is both startling and repulsive.  In addition to the great moments, I was aware of women undergoing real challenges around me all of the time.  I cannot identify with every one on every thing, but there is a solidarity among us.

CaptureAnd I was pleased to meet some people I have been wanting to meet for what seems like forever.  Jennie Grrrrrimes, for one.  A young woman whose courage and strength and humor in the face of this beast lifts us all.  Lori Marx-Rubner whose blog Regrounding always chills me out.  I don’t know if it’s the images of nature, her style, or some blog magic  but Lori always calms me down.  I also got the chance to meet some other folks as well,: Jennifer Greene, Amy, Don and Molly DeFuso, and women whose names I forgot and wish I didn’t (eff you, TFK!).

Some Suggestions for Future Conferences
Planning a conference of this sort is a difficult and challenging job.  Logistics, identifying speakers, putting together exhibitors–it’s a hard and often thankless set of tasks.  So I am not going to lob any salvos about logistics, registration, or other administrative challenges.  There were a few, but they were normal and didn’t negatively affect my experience.   And the tote and information and goodies was a really nice touch.  I really appreciated that.

What I think would be a real benefit, however, is to look to the social media universe to identify speakers and inform the choice of  workshop education.

  • Patient Advocacy, for one topic.  Why not pull together a panel of three or four women with breast cancer who have become advocates.  What ignited their interest from patient to advocacy?  Why do it?  What do they do?
  • There is a blogosphere that is literally on fire with men and women writing of their experiences–why not tap into that?  Physicians, patients, advocates–all valued participants in a shared cancer experience.
  • LBBC did not–to my knowledge–announce a hashtag for the conference.  Some were using @lbbc; I was using #lbbc.  Encourage the participants to share the information they learn.  Summon volunteers to tweet the conference (I lost my wireless the second day and I was unable to tweet).
  • Instead of one speaker = one workshop, why not have some panel discussions moderated by a chair?  Three individuals speaking on a particular topic among themselves for 45 minutes and then 15 to 20 minutes of Q&A?
  • Support groups.  Set up some workshops about how to find funding for treatments for other needs, navigating the ACA for cancer patients, strategies to deal with transportation, or something in this vein.
  • Facilitated networking.  Get people into the crowd and bring people into the fold–not everyone is comfortable.
  • Have a Friday evening pre-conference networking opportunity.
  • Use a time-keeper to keep a tight reign on speech length so that Q&A sessions can be properly executed

Having sat at three tables with different women throughout the conference, I can tell you that they know their disease very well.  What they (we) need to do is learn how to live with the disease.  That may mean a plenary on finding meaning, but it could also mean workshops on how to navigate the system, a discussion among women who and men who blog about their experience, or just learn about patient advocacy.

All in all it was a good experience on the social end, but in terms of the program it needs some teeth.  And this community is rife with women and men who are poised to bite.

Thanks for pulling all of this together, LBBC.   True, I was not satisfied with the workshops as a rule, but the conference was a special experience and I would attend again.

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25 Responses to Report: LBBC’s Annual Conference for Women with Metastatic Breast Cancer

  1. Wish I’d been there. Really appreciate you taking the time to share what you saw and heard.

  2. Hello, fellow Empowered BLogger….I am looking forward to “following the boob”!
    Florence
    http://www.perksofcancer.com

  3. Congratulations ~ I’ve nominated you for the WP Family Award! Please stop by to pick up your award ~ Hugs to you! http://misifusa.wordpress.com/2013/04/20/a-la-familia-wp-family-awards/

  4. Scorchy, YOU would be a great person to have on a panel. As for the audience comments/questions/interruptions, this reminded me of when I’d attended writing conferences and we’d break into workshops. When it was Q&A time, I never understood why people didn’t understand that their questions should address topics of universal curiosity, not that person’s particularities at the expense and exasperation of the entire room. It’s just common courtesy and thoughtfulness.

  5. Jenn says:

    A very balanced and thoughtful review. I also found it an overall positive experience. It was fabulous to meet you finally!

  6. Excellent review, Scorchy. I learned a lot and it sounds like you did as well. -Elizabeth

  7. jbaird says:

    Thank you for recapping the experience. As a patient-advocate for the National Lymphedema Network (NLN) I attend their biannual conferences. More research progress is discussed every time I go, but financial aid to cover compression garments is just not there. The NLN does not want just any patient to go to these conferences because they will ask personal questions and monopolize the sessions, just as you describe. That must have been frustrating. Still, overall it sounds like it was quite a good experience for you, especially the networking. I’m very interested in the workshop you attended on what to eat. Loss of appetite is a big issue for many of us. I should look into going next year. I need to be around more people with mets who can encourage me. xo

    • Scorchy says:

      It was a good experience. I saw some women there with some serious lymphedema issues and I was really angry that this was such a non-issue to insurance companies. I would encourage you to write to the nutritionist–her info can be found on the University of Pennsylvania hospital site. She invited participants to contact her and she handed out her Powerpoint presentation. Very informative.

  8. jschoger says:

    Hi Scorchy,
    What a fabulous post! I haven’t been at a conference yet where someone, at some point doesn’t ask questions from an individual perspective, and not the collective. It is as aggravating as all get out. While we all understand the shaky vulnerability following a diagnosis — most of those in attendance should know better. Perhaps Dr. Lu could write a blog-post about maintaining control of a session!

    Your observations also confirmed something else I’ve noticed: the real lag in intelligent use of social media channels for too many conferences. I’m amazed by how behind the times many nonprofit organizations are, especially LBBC. I hope your input is heard.

    One last question: will you be attending the conference in Houston? I live thirty miles north and would love to meet you.

    Thanks for your sharp writing.

    Jdoy

    • Scorchy says:

      I do not understand why social media is not embraced more fully. I am used to it at my professional conferences and considered it a given, bit apparently not. A good bit of advice for ALL conferences. I do not know if I’ll be in Houston. I will need to investigate. If I am, you’d better believe we’ll get together!! Thanks for your kind words.

  9. katherinembc says:

    Hi Scorchy
    Thanks for sharing your review–I was not at the conference, but as an MBCN board member I am helping plan our Sept 21 even in Houston–your thoughts are a great help!
    Last year in Chicago I was moderating a bone mets session at the MBCN’s conference and ran into the same issue–although we had asked that people let the expert speak (and had time set aside for Q&A), several people did insist on interrupting. This wasn’t fair to those who held their questions.
    I was a first time moderator and hope to apply what I have learned at the Sept conference!
    I have been compiling a running FAQ and will try to share that before the conference.

    • Scorchy says:

      When an audience is passionate, their desire for answers is understandable. We live in a weird unknown and we want concrete answers. But we need to let these sessions play out in a way that is respectful for everyone.

      I’m so glad to know that the comments help you as you plan for the future. I’ll try to make it to the MBCN conference. I stopped by the table and met Amy. Need to email her. xoxoxo

  10. I wish there was something like this in the UK. One thing that springs to mind is, who were the organisers and do they have MBC? The whole breast cancer industry is dominated by Pink and Primary cancer. It is not the same thing once you have gone to the ‘dark’ side but still much of what we are perceived to want and need is done by those with Primary Breast Cancer, or no cancer at all.

    Finding a way to deal with the frustration of having a form of MBC and the lack of interest in anything that is not Pink is a vital part of living with, and coming to terms with, MBC. There are medical conferences that deal with the nitty gritty of the medical side of MBC but the name of the group organising this is Living Beyond Breast Cancer, and that is what we need, help with living beyond a diagnosis of breast cancer if you have MBC.

    • katherinembc says:

      FYI, as you noted this is more of a medical conference, but the International Consensus Conference for Advanced Breast Cancer (ABC1), took place in Lisbon, Portugal in November 2011, brought together 800 participants from 64 countries worldwide to develop a set of consensus guidelines for the management of advanced breast cancer (ABC). Participants – including health professionals, patient advocates and journalists – agreed to a series of guidelines, which are based on the most up-to-date evidence and can be used to guide treatment decision making in diverse health care settings globally.

      The Advanced Breast Cancer Second International Consensus Conference (ABC2) will take place in Lisbon, Portugal, on 7-9 November 2013: http://www.abc-lisbon.org/pagine-interne/welcome-2.html

  11. Susan says:

    This is a great and honest look at your experience for LBBC’s Annual Conference for Women Living with Breast cancer. I love the way you talk about the speakers and also put your wonderful wit and humor infused with a realistic look at the conference. I can see that pediatric hand prints did not fit with the program. I think it is terrible that lymphedema is not covered by most insurance. According to a new UC San Francisco study,” Lympadema is more likely seen in patients that present with more advanced disease on initial diagnosis”. Thanks for this recap of the conference. I am so glad you got to meet so many great people and virtual friends in person.

  12. I”m glad you went ~ and reported honestly back to us! It’s what I love about your blog ~ your wit, your shoot from the hip attitude and your friendship. Shine On!

  13. helensamia says:

    Much as every moment was not good you still sound like you had a good time even if just to meet some virtual friends.. That alone would be worth going for 🙂 yes Lymphoedema… Often treatment is not covered .. Or no treatment is available.. It is a side effect of cancer treatment that no one needs…. 😦

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