Don’t Ignore It!


One of the first things I did when a doctor said “Maybe” with “Inflammatory Breast Cancer” was to get on-line and start reading.  When I didn’t know for sure, Jeremy would get mad at me….”get off the computer,” he would say.  But I read enough to be pretty scared.  IBC is not a good cancer to have and it is too late, too often, too quickly.  Here is the scary part.  If you look up IBC and blogging you will read over and over again about young moms who were either pregnant or breastfeeding and thought they had a plugged duct or mastitis (breast infection) and ignored it or thought it would go away.  Most women diagnosed with IBC will either be pregnant, breastfeeding or in menopause.  And women who get breast cancer before the age of 40 are most often diagnosed with a more aggressive kind.  When I say too late I mean 6 months can be too late.  I read over and over again MY story on other blogs….”I was nursing my baby and thought I had a plugged duct…..breast was swollen….breast was hot…”  The words haunt me! 

When I started to notice my symptoms I looked on LLL, Dr. Sears and Kellymom.  I would type in “mastitis” or “plugged duct.”  Not once did it alert me that I could have cancer.  I don’t remember ever seeing….if a plugged duct or an infection lasts longer than two weeks….it might not be mastitis and other things can cause this.  Even if they had said there were other things that could cause this…..without alarming women….it would have been helpful to me.  I am thankful that I’m not a timid woman and after a few months I decided it was time for help.  I never once thought “cancer.”  I finally told my ob/gyn receptionists if they couldn’t see me that day then I would go to ER.  They saw me that day.  And when my doctor looked at it I am thankful she recognized it as IBC immediately.  She saved my life and I am forever grateful.

If you hear anything I say….do not put off getting help if you have something that isn’t right.  We moms get through days with a lot of aches and pains.  We take care of everyone in the family first.  Well ladies….if something is swollen, if something is red, if something has a lump, if something hurts, if the skin feels wierd, has a rash, has pits in it, feels hardened, has a bruise, looks like a bug bite….whatever…..do not let it go for more than a few weeks without seeking help.  And if a doctor doesn’t listen to you go somewhere else.  I have learned that your health belongs to you and you shouldn’t worry about hurting someone’s feeling when it comes to second opinions. 

Here is a great site I was introduced to by another blogger.  It’s called worldwide breast cancer and you can learn some symptoms to look for.  Even though we’ve come a long way in fighting breast cancer, one thing we did that wasn’t good is tell women to check for only lumps….like it was the only symptom.  It’s not, although it is probably the most common.  So check out them lemons….lol!

I recently read the Lance Armstrong book again…..I read it five years ago….but now read it with a defferent perspective.  He was lucky.  He put off getting a painful testicle checked until it was the size of an orange.  By then he was coughing up blood.  He let it go for something like 6-8 months and by the time he sought help his cancer had mets in the lungs and brain.  His chest x-ray looked like a snowstorm. 

I plan to write some letters in the near future to LLL and some breastfeeding help sites on the internet.  It doesn’t have to be too late.  The earlier you catch aggressive cancer the better.  It’s scarry, but facing it is better than hiding or ignoring a problem.  Your prognosis will be a lot better too.

Dedicated to “punk rock mommy” who was too late.  Your life and blog inspired us all.  And to Dr. Vanderbrink-Webb who recognized my symptoms right away and was my advocate.

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8 thoughts on “Don’t Ignore It!

  1. Laurie Starr says:

    Jen,

    Thanks for the great blog entry. Too many of us “moms” put ourselves last and don’t demand appropriate care. I am so glad you did and that your case seems to be one of the success stories!

    May I also remind all women who are having what seem to persistent yeast infections to demand a biopsy! My mom was misdiagnosed and treated with antibiotic creams for over six months for what her doctor thought was a stubborn yeast infection in her vulva. After seeing a new physician, he ordered a biopsy and she was diagnosed with cancer of the vulva. As you know, it was too late and it spread to her lymph nodes and she passed away. All women should do a monthly self-exam of their vulva/labia/perineal area to check for irregular color or growth. If you see anything unusual, do not delay in seeking your physician’s advice.

    Thanks, Jen, for helping spread the word about proactive health care!

    Love,

    your cousin Laurie

  2. Gina Wilson says:

    Jen! God has His hand on you during this journey. I am blessed by your blog. I hope at some point you consider turning this blog into a book. It is inspirational. Know you are loved and prayed for. And yes, it is so true we tend to brush off symptoms for too long, yet when our children are ill we hurry them off to the doctor.

    Hope you had a lovely time at Family Camp.

  3. Mare says:

    Thank you for writing such a well written blog about Inflammatory Breast Cancer. I am truly sorry about your diagnosis but fortunately you had a doctor who knew what IBC is! By having this blog you are spreading much needed awareness not jut to the general public but to the medical community as well. My daughter was diagnosed with IBC when she was 36 years old and 11 years later continues to do remarkably well .. I wish the same for you! If you or any of your friends would like some literature on IBC from the Inflammatory Breast Cancer Foundation, please let me know and I will be more than happy to mail them. Do you know that four States have Proclamations that state Inflammatory Breast Cancer Awareness week/month will be in October? Also the First International Inflammatory Breast Cancer Conference will be in Houston, TX in December. Also Rep. McCarthy from NY has just proposed a bill HR1300 which you can view at the IBC Foundation’s website. Thank you so much for your blog … it came in my Google news and without question you might have saved someone’s life. Wishing you an easier time than anticipated going through your journey of IBC and good health.
    Marilyn ‘Mare’ Kirschenbaum
    Vice President
    Inflammatory Breast Cancer Foundation
    http://www.ERASEibc.com

  4. imstell says:

    Jen – Incredible post. You should cross-post this to Mothers with Cancer.

    Cousin Laurie – My Great Grandmother had vulvar cancer and a vulvectomy (?). Can you imagine? I always wondered what the symptoms were. Thanks for the info.

    Wonderful info on the IBC conference!!!

    Stella

  5. shelli kratzer says:

    you’re an activist (and an articulate one at that :)) — it’s one of the many, many things i love about you! thanks for doing something to help others! i will spread the word in my sphere of influence – i’ll shout it from the mountain top!

    i love you!

  6. Jim Kane says:

    Hey there… I just found out about you and your journey via Amy on Facebook… Jen, we love you and we are with you during these days in thought and prayer…

    Jim

  7. sprucehillfarm says:

    Wonderful post! Thank you for writing it. You should post it on Mothers with cancer! If you are not able to I can post it for you if you like.

  8. chanda says:

    Thanks, Jen for the info. I will have this weapon and carry it with me while working with all the pregnant and nursing moms that I work with. I know that my mom tells me over and over to make sure people know that it’s not always a lump. She had a dimple. She’s 5 years out now and we are all so grateful!

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