Inflammatory Breast Cancer: Genetic Origins?

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?


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:

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! 


31 Responses to Inflammatory Breast Cancer: Genetic Origins?

  1. Karen says:

    We ALL ate/eat cheese-its and drank/drink diet coke and hang out in physics departments with mercury spills. Well, maybe not that last thing (though I did spend my B.A. in a physics dept). Cancer is not anybody’s fault. Some people get it, some don’t despite how we live our lives. Instead of beating up ourselves, let’s beat up the cancer instead! Yay for this grant! I hope there are more where that comes from!!!

  2. Stella says:

    Are you triple negative, too, Susan? I thought it was just Sarah and I! This is good news, indeed!!!!!

  3. Well, I’m bawling. This is WONDERFUL news, and I’ve passed it along to a couple of people I sort of know who are working on genetic research and cancer. *ahem*

    IBC deserves more time and more money in research. Thank you to the foundation for being there to get things rolling!!!

  4. Susan, this is great news! Thanks for sharing. And it’s amazing how much a relatively small amount like $50K can do!

    And, when I read that you feared trolls would leave comments suggesting that you caused your cancer by “snacking on diet coke and cheese-its,” I was overcome by a desire to throw Diet Coke in their faces and rub it in with Cheez-Its! (And I’m not the violent type…but anyone daring to suggest that to you just angers me so much… )

    • When I was first diagnosed, there was a commenter who regularly blamed me for it, sending graphic links of diseased rats who drank the equivalent of 200-2000 sodas/day over their lifetimes – and I swear I’m not that bad! Just one a day, or maybe two. But it was hurtful, particularly so soon after diagnosis.

    • … I wonder how many cancer blogs have had similar comments. It’s really rotten!

      • That is really obnoxious. Whey they or someone close to them gets cancer (and statistics show it’s going to happen), see how they change their opinions. Ignorance is bliss, isn’t it? For the ignorant, I mean.

  5. Jo Major Ciolino says:

    Having lost my mother, my brother, 2 uncles and cousins to cancer I have always believed in the DNA factor in cancer. I am a cancer survivor (of 2 types) and have cousins in the same lucky category. Creighton University (Omaha) has been following us for years to watch and study the DNA factor in cancer. I’m so glad there is more money and research going toward this VERY IMPORTANT cause.

  6. Brandie says:

    This is fabulous news. Research like this could be life-saving/life-changing.

    And also, even though I would tell you in a heartbeat and mean it, cancer is not your fault … I still wonder what the heck I did to cause my cancer. And even though my doctors think it’s genetic, I still have to wonder if I did something to activate that particular gene (does it even work that way?).

    Anyway, I’m so excited to hear about this research.=)

    • Exactly. I think we know it’s mostly genetic and environmental, but that doesn’t take away the questions of what triggered it in this person and not that. Especially when you’re one of those persons and having an absolutely rotten day.

      Hugs to you, Brandie —

  7. Elaine says:

    Ugh! The things people will say! Excellent news – and an excellent reminder of where dollars can be sent to keep scientists working on this disease!

  8. Coach C says:

    Now this IS wonderful news and finally a breakthrough in the allocation of resources to research in the exciting and promising emerging views of the field! We are headed in the right direction, are we not? Let’s pray for her and her “army” to identify these culprits which will also provide the screening mechanisms to identify those “at risk”!

  9. As a fellow IBCer who also worked in an industrial lab before having children, I also have wondered the same things about the origins of my cancer (and the junk food cause too). Especially when one of the few other women I worked with the time also developed breast cancer. I honestly don’t think it was that but we all get so hungry for answers that we look everywhere for the cause. I’m so happy that they are doing this research, even though its for TN IBC what they find out could have wider ramifications especially for those of us who are hormone negative (I’m hormone negative, Her2 positive)

  10. ambermccann says:

    Awesome, awesome, awesome news! I might not have lots of money to donate but I’ve got breasts that I’ll loan to any research study that will use them. If you hear specifics on them needing healthy participants, let me know. I’m proud to use my breasts so other women don’t have to lose theirs.

  11. Marcia says:

    Wonderful news, Susan! We can only find the cause and search for a cure with more research. Look at Herceptin for example. A single drug has changed the course of HER-2+ disease. Here’s hoping that an IBC-targeted drug will be found soon!

    And as for causes, yes, I think it’s part of human nature to try to blame it on something. I was bombarded with comments of that nature when I was diagnosed. My favorite came from my MIL: “Oh, it must have been all the swimming you did in chlorinated pools”. Ha!

  12. Happy dance! Hooray for wonderful people who donate, and brilliant driven people who do this research. May they find what they are looking for, and may it be just what we all need.
    Lots of love to you, Susan.

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  14. Beckie says:

    Any genetic research is wonderful news, but especially when it hits so close to home. Obviously, my husband does not have breast cancer, but other than a genetic “hiccup” he shouldn’t have stage 4 esophageal cancer either – way too young for the damage to occur. So, I understand the frustration (understatement) with genetics.

    I really enjoy reading your posts. I started a few weeks ago, when Judy at mentioned you, and read them all. You vocalize so well what I know my husband is going through. You have similar pains and fatigue. Thanks for sharing your children’s viewpoints too – that helps.

  15. As a her2+ breast cancer patient, I can “feel” some of your emotions right along with you. I was scared to death that was going to ravage my pregnant, cancerous body and when I found out that a new therapy had JUST been approved to treat me, I was so thrilled. Fast Forward 52 herceptin treatments later and I’m watching the Lifetime movie based on the doctor who developed/discovered herceptin and all the nights he didn’t sleep and money he had to find and fights he had to have with pharmaceutical reps and I bawled through the entire movie, for every little victory and every little setback. These things mean teh world to us! I’m so happy some good news was discovered in your part of the cancer world!

    • Brandie says:

      There’s a movie about herceptin? I need to watch it and learn about the doctor who fought for it!

      • HeatherS says:

        Yes! The movie about herceptin is called Living Proof and it is actually a Lifetime movie based on the Dr. Dennis Slamon (or Slayman), I think I got it right the first time, played by Harry Connick, Jr. It was just amazing and if you are/were her2+, get out the tissues…really, just get them out. I’m sure they will be playing it again and again in October along with Why I wore Lipstick to my Mastectomy. Another great book and movie.

  16. karengreener says:

    I’ve often heard it said that genetics loads the gun and lifestyle pulls the trigger when it comes to cancer. We’ve figured out the lifestyle part; glad to hear that we’re another step closer to figuring out the genetics part.

  17. Bon says:

    wonderful news. do you know a way we can give specifically to the TGen Institute and to this project?

  18. Claudia Nixon Fauver says:

    The more research done re IBC, the better it is for all of us with IBC, whether we’re TN or not (I’m not). I’m sure the $50,000 is only a drop in the bucket to what’s needed to complete this research, but it’s a start.

  19. nancyspoint says:

    I know there are things we can do to minimize our risk, but no matter what we do or don’t do, cancer can and does strike way too often. I always get very skeptical when I start hearing “blame the patient” type stuff even if the message is unintended. I’m BRCA 2 positive, so that comes in handy for a blame source if nothing else!

    I’m with you on research equals excitement. We simply have to get some of this stuff figured out. And IBC has to get way more attention. It just has to.

    Over the moon with you about this news!

  20. Let’s be clear more than $100 of that money is due to you. I also donated in your honor a while back and I bet others have an well.

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