Inflammatory breast cancer is a particularly deadly variant.  Over half of women who contract it die within 5 years.  I was diagnosed in June 2007, and I’ve been making the most of my time as a mother, an astrophysicist, a wife, a friend, and an advocate that women and their doctors know the signs and symptoms of this sneaky cancer– because with early detection comes a better chance of survival. Inflammatory breast cancer forms in nests and sheets in the lymphatic system of the breast — it’s the breast cancer without a lump — and everyone needs to know the other symptoms and changes in our breasts that could also mean trouble.  Until everyone knows that signs of breast cancer also include a rash, a bug bite that won’t heal, heat, and a funny texture to the skin of the breast that looks or feels a little like an orange peel, I will keep speaking out about inflammatory breast cancer, metastatic breast cancer, and the friends I’ve made through my cancer journey.

Here’s what I tell my friends: Know yourself. If something changes in one of your breasts, lump or no lump, call the doctor. If you’re told it’s mastitis, but it doesn’t heal after a 10-day round of antibiotics, insist on a biopsy “to rule out inflammatory breast cancer.” 

Speaking engagements:  Blogalicious American Cancer Society event October 2011, BlogHer Voices of the Year 2010, American Cancer Society annual meeting 2009, BlogHer session presenter 2009, BlogHer session presenter 2008

Media (U.S., Canada, Australia, and France), including coverage by, Health, USA Today, and the Huffington Post:

I’m definitely still interested in spreading the word, so if you’re interested in doing a story or know someone who might be, please contact me for an interview, speaking engagement, or reprinting of an article on my blog!

21 Responses to Press

  1. Jessica says:

    I am walking in October in the Maryland Race for the Cure–would it be ok if I link to your site on my fundraising page as a place where people can go learn about Inflammatory Breast Cancer?
    Email me at abushelandapeck(at)gmail(dot)com

  2. Sharon says:

    Hi! I read your story in the Octissue of Parents mag. I just gave birth to my second child and upon reading the info on you website was inspired by your strength and efforts. I understand what you must be feeling, although I do not have cancer I have SLE (Lupus). I am not able to walk withWhyMommy but I am willing to donate 10% of any proceeds from the products that I sell on my website to you/your family and /or your organization. If anyone in your WhyMommy team would like to get more information please email me at I commend you for the courageous manner in which you are living your life . My prayers and support are with you.

  3. Sharon says:

    Correction in above website-

  4. Marianne says:

    Hi WhyMommy – I’m listening to CBC Radio One at work today, and a caller (who, coincidentally, was also named Marianne/Mary Anne) into the show “BC Almanac” just plugged your blog! They’re talking about a new web-based resource for breast cancer survivors here in BC, and they’ve just said they’re going to link to you!

    Thought you’d like to know.

  5. Hi,

    As noted by Marianne above, today one of our listeners told us how much she appreciates your blog. I’ve posted a link to it on our CBC British Columbia web page.

    You might like to see the new ‘Breast Cancer Navigation Map’ that we were speaking about, and another British Columbia-based blog created by one of our listeners.

    All the best
    Mark Forsythe
    BC Almanac
    CBC Radio, Vancouver, Canada

  6. Rivkah says:

    Dear Susan,
    Thank you for sharing your story with Health magazine. You are an incredibly strong and brave woman. Your journey back to health demonstrates for others that it is possible to go through the worst and still be a survivor.

    Currently, I have several health issues including a problem with my liver from a biopsy. The etiology of this issue has not yet been found, as I am not a drinker. However, I am not writing for myself.

    My children are grown. I had a very bad case of mastitis with my second child. Thankfully, it was treated and cured.

    I had never heard of IBC. In fact, when I was a young woman of childbearing age, most all the literature stated if you breast-fed, you cut your breast cancer risk way down.

    So, I wish to thank you again. As a result of your article, I called my daughter, who is working on her second child, to inform her of this deadly disease. She is a paramedic and also had never heard of IBC. You have done a great service to women everywhere by informing them of a disease that is curable if caught early enough.

    Thank you and may the Almighty grant you a long and happy life.

  7. Mary Parins says:

    Dear Susan,
    Thank you for the article in Health. I was diagnosed with inflammatory breast cancer in 1985. Discovered what appeared to be an inflamed milk duct while still nursing my daughter. It has been a long road and I have been grateful to still be traveling. I am grateful to read your words on the internet…and all the responses stirred up. It is so good to spread words of knowledge about this disease.
    Thank you.

  8. Beth says:

    Hi Susan,

    I am so moved by your story, and the achingly beautiful way you tell it. I blog at a new site for moms in Raleigh/Durham, NC called Triangle Mom2Mom, and would love to share your message with that community as our area prepares for its Race for the Cure next weekend, as well as on my own blog. I was wondering if you might have a spare moment to connect?

    Wishing you all best–
    Beth (bn32105[@]gmail[dot]com)

  9. Dearest Ladies…my name is rose firestone. I am a North Carolina writer. I have just finished my first book called Keeping Abreast. I wrote it for my best friend with breast cancer. My book is the only book written in creative imagery and poetry. Each piece tells a story and the order of each piece tells my friends story. It is well worth the read…For every book I sell I donate a % to breast cancer research… check out my web site and lets try to help every one….check at or just google my name. anyone who wants to e-mail me feel free to do so…I am only trying to help the cause…good luck to all and god bless………………

  10. Dearest Ladies…my name is rose firestone. I am a North Carolina writer. I have just finished my first book called Keeping Abreast. I wrote it for my best friend with breast cancer. My book is the only book written in creative imagery and poetry. Each piece tells a story and the order of each piece tells my friends story. It is well worth the read…For every book I sell I donate a % to breast cancer research… check out my web site and lets try to help every one….check at or just google my name. anyone who wants to e-mail me feel free to do so…I am only trying to help the cause…good luck to all and god bless………………

  11. Pat Tillis says:

    Dear Susan, I was staying at a friend’s house in her guestroom and she had placed several magazines in the room for me. When I saw your article in HEALTH, I felt like it was meant for me. You see, my parents had four children, all girls, and two have had IBC…one died of it and another has just completed a years worth of treatment. I was advised to have genetic testing and both I and my sister, who has IBC, tested negative for the BRAC1 and BRAC2 genes. I would love to get into a research group and will try to do so. I’ve already contacted my local Mayo Clinic and they don’t have any studied going on at this time. I’ve had you in my thoughts ever since I read the article. I pray that you and my sister, Rita, will beat this awful disease and that I and my sister, Tami, won’t get it. Your sister in IBC, Pat Tillis

  12. whymommy says:

    Wow, thank you Pat. So nice to hear from you, but so sorry to hear that two of your sisters have had IBC.

    Come back anytime.

  13. Jessica Trame Butler says:

    Hi Susan- you continue to be in our thoughts and prayers. Your story in Health was so very moving. I have shared it with all of my friends. Say hello to Curt for us. The boys are darling and have grown so much. Jessie (Trame) Butler

  14. Tim says:

    I’m curious if any of those diagnosed with IBC were taking Estrogen or undergoing Hormone Replacement Therapy (HRT)?

    Also, were you pre or post menopausal? And, was there anything complications, ie; hysterectomy?


  15. Dear Madam,

    Awareness–Action–Hope join us to fight Breast Cancer this October

    Bizymoms Cares Breast Cancer section would like you to join and help us spread Awareness take Action and bring some Hope.

    Awareness: please accept this banner button

    and place it anywhere on your site (where ever you wish) as long as you will help people to become aware and link it back to this banner then will lead you to our Breast Cancer page dedicated to spreading information of the illness.

    Action: This button also importantly leads you to make a small donation to two organizations we have placed on our accounts:


    A little bit of help goes a long way.

    Hope: Please let me know whether you have placed our banner button or made a donation so that we may add you to the list of sites or persons we will be placing on our very special page ‘Sites with a Heart’ commending your efforts in joining us to fight breast cancer for all the women who get diagnosed with it and supporting those who are fighting it!

    It should not be so hard to do something for a good reason because information brings about awareness and awareness leads us to take action and every step of action we take can bring hope.

    So I hope to hear from you,



  16. Hi Susan,

    This is my first time to find your site and this is my first post. Interesting how when you or a loved one is stricken with IBC how suddenly, you feel lost, confused, scared and find yourself doubting if you, or your loved one in my case, is receiving the BEST possible treatment and care available. This is me and this is how I am feeling now. My mother, Joyce Garstka was diagnosed with IBC Stage3 on Friday, Sept. 19th of this year. Mom is 72 years young and has always been blessed with good health. I am the youngest of her 4 children. 3 of us……myself, my sister and 1 brother are all Registered Nurses and we find ourselves feeling completely helpless. I know we have gotten good doctors for my mom but yet, I find myself doubting and questioning if we have the BEST doctors. I am a Diabetes Nurse Specialist.. Ask me anything about diabetes and with 100% confidence, I can answer your question and guide you to the best care and physicians. But, I don’t know a thing about IBC. I have read but to be honest, I am still confused and doubting if my mom is 1)where she needs to be and 2)getting the BEST care possible. We do not know anyone personally with this disease. Thanks to a friend of mine, I have started my mom a Caringbridge website (momandme) which I have listed. It has already made a difference in her life as well as all of us kids. But…………there is no one on it blogging to her that HAS BREAST CANCER. I am hopeful that by coming to your site she can find some WhyMommy friends!!! People that understand what she is going through and can help support her. We are all a very uplifting, positive family and feel that, together, we will beat this ugly cancer. Thank you so much for sharing of yourself and creating this awesome website. I will read it every day and learn as much as I can to help my mom. You sound like such a great person and I admire and love your will. Well, for now, I think blogging here is a good start to reaching out to ask for others help and to also help others. My best friend has recently lost her child to AML and I know how important family friends and friends that you don’t even know help. May God bless you and you will be in my daily prayers!

    Scared but hopful,

    Pray for my mother – Joyce Garstka

  17. Excuse my second post, but I would like to add my mothers Caringbridge website.



  18. Amanda says:

    Wondering if I could pick your brain on something I am doing locally.
    amanda at designtramp dot com

    Thank you!

  19. Howdy, i read your blog from time to time and i own
    a similar one and i was just curious if you
    get a lot of spam comments? If so how do you prevent it,
    any plugin or anything you can advise? I get so much lately
    it’s driving me mad so any help is very much appreciated.

  20. Rosalinda says:

    At last! Someone with the insight to solve the probelm!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: