Breast Cancer, Because Reduced Risk Does Not Mean No Risk

by Terry Arnold

Editor’s note: Breastfeeding activists, such as myself, excitedly share the information that the relative risk of breast cancer decreases by 4.3% for every 12 months a woman breastfeeds (you can read the abstract from the 2002 study here).  This is exciting information and something that should be shared but not to the exclusion of the reality that a reduced risk does not mean no risk.  Women, your health is important.  Breastfeeding can be one way to reduce your risk of breast cancer but it is not a guarantee.  Please take the time to be educated and informed and then for you, for your children and for the people that love you, learn the signs of the different types of breast cancer and don’t neglect your breast health.  This article by a beautiful friend of mine, Inflammatory Breast cancer survivor, science teacher (she’s taught my kids!), and mother of 5 breastfed children is one of the most important articles I’ve ever shared here on theleakyboob.com.  Terry is a hero, speaking out to educate others on this silent killer she has been blessed to survive.  I deeply appreciate her sharing with us, that she cares enough about us moms to risk telling us what we may not want to hear.  This article is not intended to frighten anyone, simply to help educate and share information. ~Jessica

Photo by bingeandpurge from deviantart.com

 

“You’re upsetting me”, she says and walks away….

Breast cancer, I talk about breast cancer. Especially in October (or “Pinktober” as it is sometimes called) as it is easier to strike up a conservation with a stranger due to the social focus on this disease. Today at a volunteer event to protect Galveston Bay, I asked the young woman standing near me if she had ever heard of IBC, Inflammatory Breast Cancer? She seemed a little confused at not being versed on IBC as she clearly was an educated woman savvy in women’s health issues. After a short delay, she said no, she had not heard of this type of breast cancer. I began to tell her about IBC, the cancer that is viewed as a rare but most fatal breast cancer often striking women prior to mammogram suggested age screenings. Her face tightened; unwittingly I had hit a nerve, as she told me there was a lot of breast cancer in her family. Within seconds calm washed over her face and she smiled and said, “But I will never get breast cancer!” Then I was the one at loss for words, “Why do you say that?” Her reply, “I have breastfed two children, each child over a year, so my breasts are resistance to cancer.” I sputtered for a minute…and I said, “I hate to tell you this, but I am a mom of five children, and nursed all of them at least to their first birthday, and I talk to women about IBC because I was diagnosed with this cancer the summer of 2007”.

Inflammatory Breast cancer is the most fatal of the known breast cancers and tends to hit women in younger years often prior to mammogram suggested age screening recommendations. Proper and aggressive treatment with IBC is very important and person’s presenting with IBC symptoms need to seek a diagnosis as soon as possible.

My heart was heavy after speaking to this beautiful young woman, because I think of myself as someone who encourages, gives hope and fights for education of a most aggressive cancer, which is dubbed “The Silent Killer.” As I watched her walk away, I felt like I had taken something from her, a confidence that breastfeeding was a given protector and that she could not get breast cancer, instead of my intention of giving her information that might be of benefit to her or others. All women need to be well educated on IBC, especially breastfeeding mothers. IBC is often misdiagnosed as mastitis or breast infection; the woman is given antibiotics and sent on her way. Time might heal all wounds, but with IBC time works against you and a proper and accurate diagnosis is very important. IBC is not detectable prior to a stage three, it does not present with a lump, is typically not found on a mammogram and the symptoms don’t fit what we tend to view as possible cancer threat.

 

Quick check list of symptoms of IBC

Inflammatory breast cancer symptoms may include:

• Breast swelling, which one breast is suddenly larger than the other
• Breast that feels warm to touch and may look infected
• Itching or shooting pain
• A dimpling of the breast skin that looks like an orange peel (peau d’orange)
• Thickening of the skin
• Flattened or discolored nipple
• Swelling in underarm or only on one side of neck
• Might feel lump, however lumps are not common in IBC.

It stands to reason that breastfeeding would aid in the good health of that child, as well as the mother. However it is not a magical cloak of protection from a disease that is viewed as seriously as IBC. So please from one breastfeeding mom to another, practice good breast health, read about IBC, and talk to your friends, midwives, and daughters. This conversation might be uncomfortable as it might go against what you believe to be true as to the benefits breastfeeding gives you as a woman, but we need to be willing to be uncomfortable sometimes, as knowledge is power. We need to be educated on IBC.

Resources:

www.theibcnetwork.org
Post questions to leading specialist about IBC, http://tinyurl.com/44n7xnq

 

  Terry Arnold was diagnosed with IBC in her right breast in August of 2007 after three months of    misdiagnosis. As if an IBC triple negative diagnosis was not enough of a blow, and never one to do things in a small way, she discovered her left breast had traditional cancer as well. In treatment for almost a year, Terry was blessed with so much support by family and friends that she was able to be of support to others with this disease even while still under care. Outside of being the best wife possible to her husband Calvin of 31 years and mother, mother in law and grandmother, she is focused on educating every person to learn more about IBC, its symptoms and best treatment plans. She looks forward to the day we can all remember than once, long ago, there was a disease called IBC that is now filed under an archive of past diseases because we have a cure. Hope always.
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Comments

  1. I would say that if we took the educated route to breastfeed it shouldn’t be a cul de sac 🙂

    Thank you so much, it is amazing that a piece of writting can save lives!

    Love

    Jesusa

    • I am so glad this article is here, thank you Jessica, The founder of the Leaking Boob, for believing in education for IBC.

      Jesusa, Today I posted this on the IBC Network on fb due to three calls in three days, from different parts of the country.

      “In the last few days, we been contacted by three women all newly diagnosed, all asking about IBC and pregnancy. All three of them were dx nearing the completion of a pregnancy or soon after birth of the child. Please remember that as joyful as pregnancy is, you are not exempt from IBC. Please be sure to talk to your caregiver, to be sure that they are current on sigsn of IBC.”

      within an hour, I have been contacted by 7 more women, all confirmed IBC. Please nursing moms, talk to women about IBC.

      Hope always, Terry

  2. I would like to say that, I was hesitant to get a mammogram. My family Dr. at my yearly visit, finally convinced me to go. I will say that having breastfed for a total of 8 (almost 9) years total, I do take the information that breastfeeding helps reduce your chances of Breast cancer, for gospel truth, but know that it is not 100% that you absolutely won’t get it.

    Anyway, I went, and was told they’d call me with results after the weekend. I hadn’t even arrived home yet and got a call on my cell phone that they wanted me to come in Monday for a second time and get a biopsy. I was scared and shocked! I figured if they couldn’t even wait until I’d driven home to call me back, it must be bad… I spent the weekend freaking out.

    It was NOT a pleasant experience. I cried, and wanted to have someone able to be in there to hold my hand while they poked and prodded my breast. I don’t think I had real true informed consent as they placed a small metal ‘marker’ in my breast so they would know that area had already been checked before. When those results came back, my regular family practice Dr. called and told me I was fine. What they had found, that looked strange on their mammogram’s had been an area of dried breast milk left over in a duct. Part of me thought, “Well! they just aren’t used to seeing/scanning breastfeeding boobs!” I was also slightly irritated that I had been so scared, by something that turned out to be probably quite NORMAL! And I’ll also add that nearly two years later, I still get pain and discomfort in that area every month during the week before my cycle… This is a continued source of frustration for me…
    Even as I sit here and write, I sit here and wrap my arms across my chest, against the chill of the fall air that has come, and I realize it’s that time again… the pain and extreme tenderness where I have a little scar from the biopsy procedure.
    Do I think that I might be immune from Breast Cancer? I can hope. Do I want to go subject myself to that experience again any time soon? Honestly, no I don’t!
    I do hope that my personal experience doesn’t keep other women from being aware of the risks, and the signs and symptoms of breast cancer, but responding to something about Breast health here on the Leaky Boob, I just had to write about my experience finally.

  3. Heather Garcia says:

    Hi my name is Heather and I am 38 and am currently nursing my 19 month old daughter. I woke up a few weeks ago with what I assumed was a clogged milk duct, so I went to my OB to be seen. I was told it was a clogged duct and started an antibiotic (on Friday) After taking 4 pills a day I was still not feeling any relief until late Thursday night. After reading your checklist I had(have) 4 out of 8 of the symptoms. I am unsure what my next step should be.

    • Heather, I hope you will post your question on the Morgan Welch Inflammatory Beast Cancer Site, Dr. Ueno, will answer. https://www.facebook.com/permalink.php?story_fbid=303535846329156&id=1555294219#!/InflammatoryBreastCancer

      I am not a dr and can’t give you advice, but I can speak as a IBC survivor. First, don’t be afraid. Second, if you have IBC, the antibotics don’t tend to offer relief, so hopefully this is just an infection. A woman will not have all of the symptoms at once, like the dimpling of the breast skin that looks like an orange peel (peau d’orange) that tends to be later. but if you don’t have a full response soon, there is a short check list on The IBC Network Foundation on what test are good for IBC and how they work. http://www.theibcnetwork.org/Education.html Also ask your dr if he/she or midwife is familiar with IBC. If not, possibility, they would be willing to consult with Dr. Ueno to address your concerns. Terry

  4. Heather, follow the link at the end of the article to ask your questions. This seems to be a quick and easy way to get some answers. But for your own peace of mind, get some more info and see a Dr if younare still concerned. Your health is important, don’t wait. Peace.

  5. This issue really hits home with me. My grandmother passed away from breast cancer and she nursed 5 children, too. We certainly need a cure but I think the pink ribbon marketing campaign needs to be revamped. I think ribbons should have text with facts about the disease and prevention! The pink campaign raises money and ribbons trigger emotional responses in some women, but seeing a breast cancer symbol needs to make us think: “I need to schedule a monthly date to do a breast self-exam” or “I want to breastfeed my babies to reduce my risk and theirs.”

    My grandmother’s doctor ignored her concerns for a year and she only lived three months after finally being diagnosed- the cancer had spread throughout her entire body. Women and men need to be informed and empowered to prevent and beat ALL forms of cancer. I find it hard to express this publicly when it is such a sensitive issue but I really loathe the commercial aspect of breast cancer awareness. I guess more people will buy a “Save the Ta-tas” t-shirt versus a t-shirt that says, “Inflammatory breast cancer is often misdiagnosed as mastitis or breast infection, visit theibcnetwork.org” or “Eat more beans and green veggies to reduce your risk of prostate cancer.”

    Thank you for the info, Terry.

  6. As the daughter of a 24-year breast cancer survivor AND the daughter of a proud LLL alum–same person!–I know firsthand that cancer can happen to breastfeeding women. My mom nursed two kids for a combined 5 years, and I have to say she was a little ticked when she was diagnosed. It does bother me sometimes when, in my own LLL meetings, breast cancer prevention is mentioned as a certainty. My mom was breastfed by her mother then breastfed me…and she was still diagnosed at 46. I’ve already had my first mammogram, after weaning my first and before my second pregnancy. I only wish that doctors could do more to screen lactating women at elevated risk. It seems like no one knows what to do with breasts that are actually doing their jobs–self exams are tricky, office exams find clogged ducts and normal densities, mammograms are cloudy for months after weaning. As more women are nursing for longer periods of time, it seems like we need screening that can deal with lactating breasts instead of asking women to wait 6-12 months after weaning.

    • Angela, You have some interesting points as to hgh risk moms who are lactating and the difficulty of proper testing. I hope you mention that to Dr. Ueno on the MD Anderson blog.

    • Check out breast imaging thermography. Pregnancy and breastfeeding still make it difficult to read due to the cellular activity that they bring to breast tissue, but changes can still be noticed and documented if there’s a reason for concern.

      http://www.breastthermography.com/

      • I hope Dr. Ueno will comment on thermogrpahy for IBC detection. It is not used as much in the US, but I hear alot about it in the UK. I have been told, but I am not an expert, that IBC does “read” better on a thermography that a mammo, but again, there is so much there to talk about, just getting the most basic info out is a wonderful start.

  7. I truly appreciate Terry’s effort to write up this important topic. Inflammatory breast cancer is not common but it can be deadly if misdiagnosed. This disease can hit young mother. It is important to make sure that your breast is not misdiagnosed with mastitis. After one course of antibiotics, if no improvement, I would recommend seeing doctors who knows what is inflammatory breast cancer. The only way to make a diagnosis is by biopsy. If you are diagnosed with inflammatory breast cancer, please do not undergo surgery. This is an absolute mistake. Inflammatory breast cancer must be first treated with systemic anti-cancer drugs not surgery. Please see doctors who are specialized in inflammatory breast cancer. Please feel free to post questions at our website. Thank you.

    Naoto T. Ueno, M.D., Ph.D., F.A.C.P.
    Professor of Medicine
    Executive Director of the Morgan Welch Inflammatory Breast Cancer Program and Clinic.
    Section Chief, Section of the Translational Breast Cancer Research
    Department of Breast Medical Oncology
    The University of Texas MD Anderson Cancer Center
    FaceBook Page: 
    http://www.facebook.com/NoMoreCancer
    http://www.facebook.com/InflammatoryBreastCancer
    Twitter Page:
    http://twitter.com/InflammatoryBCa
    http://twitter.com/teamoncology 

  8. Please, Please, Please mention thermography in conversations about diagnostic tools for breast cancer screenings!!! It is NON-INVASIVE and does not add to a radiation load on your body like a mammogram. It has been approved by the FDA since 1982 as an adjunct diagnostic tool for breast cancer screening and can detect breast changes well before any lump could be detected with manual palpation or mammography screening. It also can detect IBC when a mammogram cannot. It ALSO can detect breast cancer in the breast tissue above, below and to the sides of the breast that cannot be pressed into a machine! It can view the lymph nodes as well.

    It does not have the same money making ability as a mammography machine and there is no big lobby to push for it as a diagnostic tool so it is not part of the regular conversations around diagnostic screenings for breast cancer – yet it is an AMAZING tool.

    I urge you to check it out and learn more about breast imaging with thermography!!

    http://www.breastthermography.com/

  9. A plant based diet is the key as well. Keep cancer causing animal products down to less than 5% of your diet, or better yet, none at all! Eat your colorful antioxidants, to get rid of those free radicals.

  10. I would add that women who have dense breasts should know that they should simply ask for an MRI, rather than mammogram, since mammograms are known to be less accurate for those of us who have a fuller bust. My husband (a doctor) has already told me to skip the mammogram and go straight to MRI.

    • That is a very good point. Christina Applegate has started a charity for this purpose. “Actress Christina Applegate is set to launch her own cancer charity that will help women who can’t afford proper preventative care. Right Action For Women will offer programs to help give financial aid to high-risk women who cant afford to get MRIs. An MRI is one of the breast cancer screening tests recommended by the American Cancer Society for women at increased risk for breast cancer.”

      Ms. Applegate is a woman who had naturally dense breast with a high history of breast cancer in her family. Dx at age 36, she has focused on improving women’s health via MRI education and funding.

  11. My mom just posted on fb that a young woman from her church just passed away from IBC last night. She was diagnosed with breast cancer a while back and was recently told she was cancer free, then less than 2 weeks ago was told she was terminal! I know her family, both relative and church, are trying to make sense of this…of how within weeks, she could be told two such drastically different things, and now she has gone! She leaves behind young children as well. Terrible!!

  12. in the spirit of this post–and perhaps most especially because–i would like to ask you all to stop by toddler planet and give susan neiber and her family kind wishes of peace and comfort and prayer.
    http://toddlerplanet.wordpress.com/
    ____
    or perhaps you’ve read about the #whymommy love fest:
    http://www.washingtonpost.com/blogs/on-parenting/post/toddler-planet-mom-finds-support-around-the-world-after-chronicling-battle-with-cancer/2012/01/24/gIQAm9sDOQ_blog.html

    (sorry, i don’t know how to do the magic to make those links all nice and linky)

    and ladies, know your boobies. touch your boobies. regularly

  13. I’m scared now. I had a big sore breast whilst feeding my son and had an abces s I had this drained and wentmon my way with antibiotics. Since then i have had recurring sore breast and had a biopsy where they said all that showed was inflamed tissue. And not to worry and was sent on my way. That was over 18months ago now. Do you think I should go back and be checked out again? I’mcurrently 28wks pregnant with my second child. The breast in question would always flare up before my period etc.

    • Vicki, I’m not expert but I would have it looked at again, it wouldn’t hurt and it could give you some answers or peace of mind. I hope you can feel relieved about it soon but do get it checked. ~Jessica