Inflammatory Breast Cancer: Genetic Origins?

September 9, 2011

For years, now, I’ve beaten myself up over how and why I got inflammatory breast cancer (IBC).  Was it that I drank too many diet cokes while studying for college exams?  Was it that I worked in a physics department and there was more than one mercury spill in the lab, unbeknownst to me?  Was it the water we swam in off the Maryland coast when I was so very pregnant, where we saw the industrial plant nearby as we were leaving?  Did I eat too many cheese-its and other processed food?  Why, God, why?

Ahem.

I may have overreacted, back when I was first diagnosed and new to the topic, and of course at each recurrence — it’s only natural.

But we do know a few things about the origins of cancer.  In addition to a person’s actions and direct exposures (like Chernobyl and other disasters), some cancers have environmental origins, which an individual can do little about.  Some cancers are exacerbated by lifestyle factors, like smoking, overeating, and lack of exercise.  We know that now, and we know that we all can reduce our risk of cancer by eating fresh foods, by exercising, and by keeping our weight at a reasonable figure.  There is one more promising source, though, that we haven’t yet been able to do much about yet, and that’s genetics.  Some people have a gene that causes cells to mutate and grow more quickly than typical cells, and some of those people will develop precancers and full-blown cancers (and that sucks!).

The IBC Research Foundation announced today that they have raised $50,000 and given a research grant to Dr. Heather Cunliffe, Ph.D., to determine the genetic origins of triple-negative IBC.  My hands are shaking as I type this.  This is what we’ve wanted and needed – this is REAL hope.  Not pink-ribbon hope, but REAL hope to find a cause, and then a cure, for inflammatory breast cancer, which still kills half of the people it plagues within 5 years.

This is what I’ve been waiting for.  And all it took was $50,000 in donations.

One of which was mine.

I’m adding Dr. Cunliffe to my prayers this week.  I pray that she stay strong, and dedicated, and that she have the right tools and support to FIND the GENE that causes my cancer, and that that knowledge then can be USED by her or others to find out how to turn it off.

So that others don’t have to suffer.

I’m over the moon about this news, and I wanted to share this with you — even at the risk of trolls appearing in my comments telling me that I did, actually, cause my cancer by snacking on diet coke and cheese-its.  This news isn’t about me.  It’s about reducing risk for those who come after me, and it is WONDERFUL news!

TGen Receives $50,000 to Find Genetic Origins of Rare Breast Cancer

PHOENIX, Ariz. – Sept. 7, 2011 – The Inflammatory Breast Cancer Research Foundation (IBCRF) has awarded $50,000 to the Translational Genomics Research Institute (TGen) to discover the genetic origins of this rare and most deadly form of breast cancer.

Unlike other types of breast cancer, Inflammatory Breast Cancer (IBC) is very often misdiagnosed, and rapidly progresses to an advanced stage, said Dr. Heather Cunliffe, Head of TGen’s Breast & Ovarian Cancer Research Unit. “No one knows what causes IBC and what drives the aggressive nature of this disease,” Dr. Cunliffe said. “You can wake up one morning and out of the blue your breast will be twice its normal size, red and inflamed with full blown Inflammatory Breast Cancer.”

To read the rest of the press release go to:
http://www.tgen.org/news/index.cfm?newsid=1991

Congratulations, Dr. Cunliffe, and THANK YOU, IBC Research Foundation!

To donate, visit the IBC Research Foundation‘s website; if you wish, you can mark your check “for research.”  I did, and I’m so excited to see how my donation and others are being used! 


October

October 22, 2010

Leaf, from art4linux.org

The world seems to come alive in October, as the wind begins to blow, gently at first, teasing the leaves who haven’t heard that it’s time to change. Then, all at once, as if the dogs’ evening howl spreads the message across the miles, the green begins to fade and the trees begin their dance with colors. First the maples tinge with orange, then the pears gather yellow about their branches. Finally the young exotic dons its coat of firey red, and our morning drive to school becomes a chorus of “ooh”s and “aah”s as we compete to find the prettiest, the most breathtaking, tree of the day. My children and I delight in seeing the colors take hold, competing in their brillance, creating a Fall mosaic more beautiful than the finest earthly artists, and one that each tree could never create on its own.

When I was a child, I never knew this cacophany of color. I grew up in Mississippi in the 1970s, a time and a place where just as the trees never changed (except green to brown, while we were sleeping), the people were slow to change as well. I remember — and this is only my memory, I don’t speak for others — I remember things being so concrete then. There were things that were Right. And things that were Wrong. And we were taught to know the difference. Everything was so clear-cut back then. We knew what was expected of us, and we either obeyed or rebelled, as fit with our own black-and-white, right-or-wrong, something-we-do-or-something-we-would-never-do moral code. Even the trees knew their place. They all obeyed the rule of nature and dutifully kept their demure green coats on until the exact day that they were told to turn brown and drop their leaves. Were there shades of brown? Not that I saw. There were no shades of grey in my youth that I remember. The trees were green, and then they were brown, and then they were bare, if they were so careless as to not be born a pine tree, with her evergreen gown around her.

I remember clearly — so clearly — my mother collecting the most vivid leaves she could find each Fall and taping them to the kitchen windows, bringing us a little of the magic she remembered from her youth and teaching us that there was more to see than green and brown in the world. It was something she did every year, and we “ooh”ed and “aah”ed along with her. Although I’m not sure my little brother and I ever could really see the magic that she saw in them, we tried. I remember trying. Daddy would lift us up to the window as very little children, and we gazed and squinted and tried to see the beauty that she did in the tinges of color that peeked out among the brown.

It wasn’t until I went away to college, far in the north (and by that, I mean Southern Virginia), that I truly saw what she had been trying to teach us. There was more to the world than the choices of Green or Brown. There were colors I had never imagined, as the oranges and yellows and reds danced with the green and brown, every color in the rainbow (except blue and purple. My children would like to know why not blue.) dancing in the trees, fluttering in the leaves as they pirouetted to earth in ways that crinkly brown Southern leaves never did. I fell in love with the trees, and the “north” where differing opinions could co-exist among good people, and I exulted in it, spreading my wings on Sunday drives in an old red convertible with my yankee friends, until the last rivulets of yellow danced in the Shenendoahs, and we put on jackets against the chill, preparing for snow in the valley.

Perhaps it was my strict Southern upbringing, perhaps it is an inborn cry for justice (I feel it, and I see in my young sons, who protest when classmates don’t follow the rules, for the sake of the rules themselves, and who fall apart when their routine is disrupted by a half-day or an impending field trip), but I rarely see shades of grey in the world. I see Right and Wrong and Injustice and OMG What Has To Be Done NOW. I end up SPEAKING UP rather than coexisting, and I know that doesn’t make me an easy friend. But it’s who I am and what I do. What I want to say here, and I don’t really know how, is that I APPRECIATE the efforts of all the people and organizations in the world bringing attention to a color that has already gotten a lot of attention this month: pink. There are shades of goodness in pink and shades that worry me. I realize now that they can co-exist, and that we can appreciate and enjoy all the shades of pink without declaring them ALL GOOD or all worthless, and that each shade of pink makes a contribution to the Fall mosaic around us that is bringing awareness and action to breast cancers, and is fighting the good fight in the way that feels right to them.

Today, I thank all the people and all the organizations formed across the globe that support the fight against breast cancer, that raise awareness, that raise funds for research, and that raise the spirits of those who struggle with this disease, in their own bodies or in that of the friends and family who they love. NEVER DOUBT that what you do makes a difference. Indeed, it is the only thing that ever has. And without the research and attention paid since the 1970’s War on Cancer, I would not even be alive right now, able to talk about the Fall colors outside my window, and the Fall colors of pink that are blanketing our new world.

Thank you for that. I heartily support the rainbow of efforts being made on my behalf and all of us who suffer from the breast cancers, as well as those pathfinders who have gone before. Here is (I hope) my last October post on pink, with links to my favorite organizations making a difference through their words, their campaigns, their dollars. Thank you, and please talk about your favorites in the comments if you’d like.

  • The American Cancer Society supports research and awareness on all the cancers – even the rare ones. Donate directly or go check out their newest campaigns: Choose You tips for healthy living, and online e-greetings for someone you know celebrating More Birthdays. Oh, and I did check out their NFL partnership and talked to ACS leadership: all of the pink you see at the games is being auctioned off by the NFL, with 100% of the proceeds going to ACS.
  • The Inflammatory Breast Cancer Research Foundation conducts research and spreads awareness of the cancer that has attacked me twice. They do no fundraising campaigns and have no pink partnerships (and therefore use 100% of donations for the mission and goals of the foundation, including education and research about this rare and deadly cancer). I have personally confirmed with the executive director, an IBC survivor and advocate — All checks marked “research” will be used DIRECTLY for research grants to find a cause — and a cure — for this terribly fast moving disease trying to kill me and my friends.  (Disclosure: this is where I’m donating this year, as a selfish investment in my own future and in memory of those we’ve lost.)  This group gives me hope.  Real hope that medical researchers will find a real cure, and that I will live to rock on the porch with my husband watching the changing leaves of Fall when we are old together. 
  • Living Beyond Breast Cancer is an incredible support organization that has monthly teleconferences, annual meetings in Philadelphia, and a wealth of web and printed resources available for breast cancer survivors, family, and friends. They’re good people, and their Charity Navigator rating is four stars, with 82% of their income spent directly on programming. Donate directly or participate in one of their pink promotions if that appeals to you – just choose a product that donates a substantial proportion of the proceeds (“10% of the purchase price,” “50% of the proceeds,” or a dollar figure that works for you – there are partnerships with White House/Black Market, Chico’s, and Rubbermaid).
  • Other pink shopping: don’t be afraid, just check the label and ask yourself a couple of simple questions like I do:  How much of what I’m spending on this goes to charity?  Is it a charity I recognize? Do the contents of this product contribute to cancer (check out these pages on Eli Lilly and Estee Lauder for examples)? And last — am I buying this product just because it has a pink ribbon on it — and if so, wouldn’t it be better to just send a check directly?  If the answer to the last question is yes, put it down, my friends, and send a check for that amount when you get home to the charity of your choice.  Please.
  • October is much more than breast cancer awareness month.  While I’ve written a lot about breast cancer this year, I’d also like to give a shout-out to my friends in the babyloss community and the domestic violence awareness community who are also celebrating (if celebrating can even be used in this context) awareness months, as well as those whose cancers get significantly less attention.  Let’s all keep using our words and our dollars to make a difference in the world, and remember Margaret Mead’s quote: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”