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    From the monthly archives: May 2011

    I just posted at Everyday Health about what I learned that affected my everyday behavior.  Yes, it did!  Knowing that we are not as far along as I thought when it comes to preventing recurrence and metastasis scared me even more than I already was.

    We lost another in our blogging community.

    What to do….what I can to stay well, and what I can to end it.

    Here’s the post at Everyday Health.

    This originally appeared on the Inflammatory Breast Cancer support list. Brenda’s recap was so thorough and well written that I am posting it here, with her gracious permission.

    Sun, May 8, 2011 6:06:49 AM

    The NBCC Conference was an amazing, three-day, highly choreographed event that left me breathless. It is what ritual does, at its best, and they did it very well, indeed.

    Many of the attendees were first-timers, like me and Kate. I don’t know what their conferences are like when they are not rolling out a new organizational campaign, but given that all conferences are centered on training participants to go to Capitol Hill and lobby for breast cancer issues, I’m guessing that most of them are more or less like this one.

    They were very tactful but very clear that none of us was there to talk to our lawmakers about things on our own minds about breast cancer — our own pet issues. We were there to talk to the lawmakers about the NBCC’s issues. Each state delegation that visited legislators was managed by a “team leader” who is an experienced NBCC member and has done this several times before. She was the one who did most of the speaking to the legislators, and she made sure that our group delivered its basic message. Others were allowed to speak, and as we demonstrated ourselves able to stay on-target with the NBCC message, we were allowed more and more opportunity for this as lobbying day wore on.

    Before lobbying day, however, we had three days of back-to-back-to-back conference. I’ve been to a few conferences in my day, and this one was handled rather differently than what I am accustomed to. First, breakfast and lunch were provided during the conference–a way of keeping all participants on-site and ready to hear the talks. Second, there were not a gazillion vendors selling or giving away all kinds of merchandise. There was a lobby day table, an Army of Women sign-up table, an NBCC merchandise table, and the silent auction area. That’s it. Third, the area where these tables were located was closed during the plenary sessions. Again, the point was to keep us in the conference hall and listening to the talks, not wandering around doing other things.

    There were also a variety of individual break-out workshops for us to attend. But there was only time for three of them. The rest of the time was taken up with the plenary sessions. This really was a conference designed to EDUCATE us. They tried to make that education as convenient and compelling as possible. And they did a great job of it.

    The talks were almost uniformly engaging and informative. The conference began with a welcome by Fran Visco, who introduced the new NBCC initiative, Breast Cancer Deadline 2020 — the eradication of breast cancer by January 1, 2020. They had a couple of professionally produced promotional videos for this–very compelling. Fran met the understandable skepticism head-on. “What if we fail?” she asked, and then responded, “We already have.”

    Her point is that in the decades that we have been spending millions and billions of dollars on breast cancer research, we have not come very far toward curing it. We (as a group of women with BC and our various organizations) have focused our attention on early detection (better screening methods) and awareness. But early detection, she points out, is not prevention. And awareness is not prevention.

    The frustrating truth is that in the last two or three decades, the survival rate from the kinds of breast cancer that are most dangerous have not improved much. Most of the improvement in survival statistics has been driven by the inclusion of women with forms of breast cancer (or proto-cancer) that would most likely never have become life-threatening, whose conditions were discovered thanks to improved screening techniques. Also, she pointed out, the survival statistics are five-year survival stats, and we know that many times breast cancers recur as metastases later than five years after diagnosis. So the improvement in BC survival as reflected in the five-year statistics is not really as great as it seems on the surface.

    Here’s the most telling statistic, to me: Twenty years ago there were 119 women every day who died of breast cancer. Today, after two decades of “pink” awareness, there are 110 women every day who die of breast cancer. This is good. It’s an improvement, no doubt about it. But it’s not good enough!

    What we need, Visco said, are two things: (1) a way to prevent women from ever getting breast cancer at all, and for those few who do, (2) a way to prevent metastasis, which is what kills us (not our primary tumors). Of all women who get breast cancer, roughly 30% of us will eventually become metastatic or are metastatic at the time of diagnosis. The vast majority (more than 90-95%) of women with metastatic breast cancer will eventually succumb to the disease. (The rest die of their treatments for the disease or other complications.) This must stop.

    The solution, says the NBCC, is to quit hoping for a cure, and set a deadline for one. Hope waits. Deadline acts.

    The NBCC is proposing several initiatives, the most important of which are a three-year commission to try to bring together researchers and get them working together, outside of their limited research silos (at a cost of $20 million the first year and $30 million for each of the next two years), and continuation money ($150 million) for the Department of Defense Breast Cancer Research Program, which has been a model of efficient and productive use of taxpayer money in BC research.

    The new commission’s proposed budget includes 25% for giving seed grants to researchers whose ideas for curing breast cancer are innovative and promising, but don’t yet have the level of evidence behind them to make them likely to win one of the DOD Breast Cancer Research Program awards. Grants from the seed money will try to funnel new researchers and research ideas into the current mix, in order to accelerate the discovery of a cure for BC.

    The best cure of all, the conference presenters said over and over again, would be not to ever get breast cancer in the first place. The NBCC is already supporting a project (Project Artemis) to develop a vaccine, which is apparently a real possibility.

    My personal take on all this is that while we may be able to drastically reduce the number of women who get BC, it is in the very nature of the cancer beast that we are not going to be able to prevent all forms of BC, which I suspect is caused by multiple factors–not just one easily targetable thing. So why did the NBCC set a deadline for the end of cancer — and such a close deadline — if it’s not likely to be completely do-able, much less do-able by then? I suspect it has to do with the sub-title of the “Deadline” initiative: changing the conversation.

    The conversation about breast cancer in the larger BC community has been on “early detection saves lives.” It’s been on awareness of the illness — bringing it out of the closet and into broader awareness, getting backing for more research on the disease and how to detect it. The whole approach is based on the premise that early stages of breast cancer don’t tend to become metastatic — only later stages do. So the earlier we can find it and treat it, the more likely we are to prevent its progressing to deadly metastatic disease. Thus, we improve the cure rate. We now know that this is not true.

    BC cells don’t “learn” how to become metastatic only when they have progressed to become a Stage III cancer, so if you can catch it early and keep it from progressing, all will be well. Even Stage 0 breast cancer can develop the ability to disseminate cancer cells throughout the body, where they find hospitable micro-environments and lay in wait for an opportunity to grow. Sometimes that happens quickly, sometimes it doesn’t happen until many years later. When it does happen, it’s mets. Stage IV cancer.

    So the “early detection saves lives” conversation is not a very useful way of thinking about and approaching breast cancer, as it turns out. We need to focus our conversation in a different direction. While I think that eradicating breast cancer by January 1, 2020, is probably not possible, I firmly believe that re-focusing the CONVERSATION ABOUT breast cancer is do-able by that deadline. And that would be a huge, huge thing. Re-focusing how we think and talk about breast cancer means we will re-focus our research priorities. And THAT will lead to an end to breast cancer, one day.

    There is some tension between the “rah-rah pink” crowd in the breast cancer world and the crowd that wants to focus more clearly on the continuing needs in breast cancer research and advocacy. I hope that that tension can be overcome, because we need all hands on deck for this. I hope that many individual groups around the country will join the NBCC, which is, after all, a coalition of groups. I hope that many individuals will do their small bit to support the NBCC Deadline 2020 agenda.

    I was pleased to see this conference focus on prevention of BC. I was even more pleased to see it focus so much attention on the prevent of mets. (After all, I have a horse in that race!) There were several talks that referenced this. Quite a number of us walked around the conference wearing stickers saying “Ask me about metastatic breast cancer.” At the end of the conference day on Sunday, an impromptu, informal group of women with mets gathered in one of the break-out rooms for a meet-up. Pat Steeg, a mets researcher at the NCI, was there, too, just sitting quietly in the background. But I noted that as everyone went around the room and briefly introduced themselves and told their stories, her eyes got very red and watery.

    I was also very, very happy to meet so many people whose names I have come to know via our various listservs. Musa Mayer, Ilene Winkler, Maria Wetzel, Ginny Mason, Ann Fanta, Elizabeth Danu, Kelly Kruger, Valerie Frasier, Pam B from Michigan …who have I missed? I am bad with names and worse with faces, so I’ve been trying to mentally conjure the image of each person I met and say to myself, “Remember this face! This is XXXXX!”

    There was only one problem that I could see with the message of the NBCC, which I otherwise heartily endorse. That is the fact that preventing BC and preventing mets doesn’t do anything toward *curing* metastatic disease. Prevention is great. I’m all for that. As I said, I have a horse in that race. But prevention won’t be much use to my many friends who already have mets.

    A cure for mets, you say? I say, yes. Only THAT will be the REAL and FINAL cure for breast cancer. At the conference, one of the speakers mentioned that if we can learn enough about what drives the development of metastases, we may be able to figure out how to put existing mets to sleep — make them dormant so that they don’t kill us. This goal is not formally a part of Deadline 2020, but it may be on some distant horizon somewhere out there. I hope I live long enough to see it become a reality.

    If anyone has even a twinge of interest in attending the next NBCC conference, I urge you to give in to the twinge. You won’t regret it. It leaves you with a head full of new stuff, a heart full of hope, and the compulsion to try to do more to end breast cancer.

    Brenda Denzler is, like me, a stage III Inflammatory Breast Cancer Survivor who attended the NBCC advocacy conference to end breast cancer by January 1, 2020.  We both have the possibility of recurrence and metastasis to contend with, as does anyone with IBC.  It was great to meet her and 13 other IBC sisters this trip!  She currently doesn’t have a blog, but when she starts one I’ll link to it here!

    Again, roaming, following blogs that lead to blogs. What a treasure trove I found!

    I found this one by following my friend Anna, who was herself the inspiration for this award!

    Hey, Disruptive Cancer Bloggers!

    The comments from those bloggers guilty as charged, and their justifications for the honor was the best belly laugh I’ve had in weeks. Some highlights:

    Anna’s super snark on Pink Town

    and Kathi’s beautiful self portrait

    Maybe if I stick around and play with the big kids long enough I can learn such snark skill!

     

    F—#*!!!! CANCER!

    Every so often I go roaming the internet late at night. I followed the blog of my friend Anna, and ran into the devastating stories of more lives lost, to ovarian cancer.

    My support of Deadline 2020 for the end of breast cancer is something I am 110% behind because it’s time for the end of ALL cancer. Yes, that is ambitious, but it’s logical. The important pieces we learn about one cancer often leads to inroads into understanding other cancers. We will wipe out breast cancer when we understand how to prevent it, and how to stop metastasis. Do do that we need a major paradigm shift, because currently only less than 5% of research currently goes into the study of metastatic disease. People don’t die of cancer in the breast. They die of metastatic disease. What the @#!!! is going on here? When we understand this process and how to stop it, the treatments for many cancers will change. For more on what’s really going on in breast cancer research, check out the Deadline 2020 website.

    I lost my father to Lymphoma when I was 19 and he was 44. I have several friends with metastatic breast cancer and I am reading all across cyberspace about more deaths, a tide that has to be stopped.

    Fran Visco said this weekend that when we reach January 1, 2020, we will all be out of a job, because we will have accomplished our objective.

    Not me. Not until it’s over for all of us.

    The more I learn about the real facts about breast cancer, the more annoyed I am by pink ribbons! They had their time and their purpose. Women get more mammograms, and women survive five years from diagnosis more often (there’s a trick to that statistic, it’s not what you think!). Our drug treatments, while still awful, are easier to get through because there are better drugs for the side effects. There are even new drugs, one of which I credit with the fact that I’m still here. Progress has been made certainly.

    Unfortunately, a lot of people still think that “breast cancer is not a big deal. They catch it early, treat it, and you’re fine”. When I was diagnosed, my boyfriend at the time said, “You’re gonna be ok, right?”

    That was not at all the most likely outcome.

    The incidence of breast cancer has not decreased. It has INCREASED. That is correct, and what’s more, the death rate has NOT significantly decreased! Approximately 30% of diagnosed breast cancers at all stages will return later, sometimes years later, as metastases.

    We haven’t put an end to cancer because there has not been a commitment to do it. NBCC is committing to do it. We have a deadline. The deadline is January 1, 2020.

    Pink is pretty, pink is a nice color, pink is demure.

    ENOUGH! The annual tribute to pink every October may feel as if we’re doing something, maybe it makes us more comfortable, but I for one cannot be comfortable when I have friends I care about that are fighting metastatic disease. In fact statistically that’s in my future too, though I can hope not. Is hope all I have? Is hope all I can offer my daughter? Isn’t it time we stopped the grim reaper from stealing our sisters, mothers, daughters, brothers, fathers?

    When I started trying to make a difference in a real way, after I got stronger and found my way back into blogging, I sometimes would get discouraged. A lot I would get discouraged, and weep with frustration. I wasn’t sure I could keep it up, yet the struggle must go on until we conquer.

    After this conference I feel galvanized! I can give it my all, I can work my butt off, I can learn to use facebook, twitter, linked-in, whatever. Because if we all crank like this now we can take a break, or retire (OMG) on January 1, 2020.

    My children are in the future. My friends are now. My friends Susan, Helen, Rachel, Katy, Donna, and many others whose lives are worth fighting for RIGHT NOW.

    I had lunch with a group of amazing bloggers on Sunday. I started to write this post and found my friend Susan has already jumped on it (she is in D.C. after all!), and she has already written a post about the Deadline to End Breast Cancer. She also lists the rest of the tribe of fighting women who are determined to light up cyberspace and make this happen.

    I was planning to do this tomorrow but I couldn’t contain myself!

    I’m jetlagged and my eyes are full of sand, so I’ll put up my own list tomorrow. In the meantime, go check out Mothers with Cancer for a smorgasbord of great blogs to read and more about Deadline 2020.

    I’m in 100%. Are you with us?

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