Surprised

I was surprised to learn that inflammatory breast cancer, while rare, is not the rarest of breast cancers.  That distinction instead may well belong to Paget’s disease of the nipple

Nope, I had never heard of it either.  But that didn’t stop me from getting it.  The pathology report yesterday showed that the cancer in my left breast was a very small occurence of Paget’s disease, a rare form of breast cancer.  It is, however, associated with a larger tumor of in situ, invasive, or infiltrating breast cancers (the more popular kinds) in the same breast 95% of the time.  So it’s an important cancer, nonetheless, as it can lead to discovery of a much larger tumor.  Here’s the definition of Paget’s, from breastcancer.org:

Paget’s disease of the nipple:  This is a type of breast cancer that involves the nipple. The cancer cells start in the milk-pipes or ducts at the surface of the nipple. As the cancer grows on top of the nipple, it forms a dry, crusty, bumpy rash. It can cause itching and burning around the nipple. Sometimes it can also cause oozing or bleeding. Some doctors might think it is just eczema or dry skin. But if you have these changes, and they don’t go away, be sure to see a breast specialist.

I had none of these symptoms.  It was either caught before the cancer spread to the surface, or the chemotherapy that I was taking to treat the IBC in the right breast shrank this tumor as well (quite possible, as chemotherapy affects the whole body, not just one tumor).  We’ll never know.

What I do know is I’m even luckier than I thought.  In June, I learned that 1 in 8 women will get breast cancer.  Approximately 5% of those are inflammatory breast cancer.  Another 1% of those are Paget’s disease of the nipple.  Only 5% of those are independent of  another tumor in the breast.  That makes the odds of me getting both IBC and Paget’s, but not “regular” breast cancer:

1/8 * 5/100 * 1/100 * 5/100 = 25/8,000,000

or about 3 in a million.  Long odds, to be sure, but that’s the math.  Who would have thought it?

(Edited to add:  There is another woman I know with IBC who I have found out also has Paget’s in the opposite breast.  WOW.  I don’t even know how to calculate the odds of that happening.  But all this makes my survival odds — 40% of IBC patients survive 5 years — look very, very good.)

The margins on both cancers were clean.  There was a 2 cm border around the IBC and IBC-affected skin on all sides.  So at last we can let out a breath of relief. 

The cancer is — definitely, scientifically, and completely — gone.

89 Responses to Surprised

  1. jackieb27 says:

    Waiting to here you are NED and stay that way forever!

  2. Oh, Susan. The news we’ve all been waiting to hear.

    Thank God.

    xo CGF

  3. strugi says:

    I was watching and waiting yesterday (probably not as much as you were).

    What stunning news about the paget’s disease and what great news about the margins. 2 cm!

  4. christine says:

    AWESOME! isn’t that the best feeling? the words “clean margins” have been ringing happy in my head over the last 6 years.

  5. Robin says:

    I’m so happy and grateful that you went to the doctor that day…

    And I’m ECSTATIC over your clean margins – you are CANCER-FREE!!

  6. ~JJ! says:

    Wow.

    May I link to this as well?

  7. Amy says:

    Amazing. Wow. Wordless.

  8. Becky says:

    Wow. I’m so glad you fought for the double mastectomy. So many don’t.
    I well remember the overwhelming relief and deep sense of gratitude that comes with the words “clean margins”. What a bumpy ride this has been. Thanks for sharing your story, thanks for getting the word out on IBC.

    Celebrate!!!!!!!

  9. Linda Lawrence says:

    Hurrah! Of course, as a mathematician I loved that you shared the probabilities!

    Love ya,
    Aunt Linda
    🙂 🙂

  10. Good riddance. And now its time to celebrate–you deserve it!

    Best wishes to you and your whole family–what a relief for all of you. Good luck in your recovery, too, I hope its going smoothly now.

    Hugs!

  11. NYfriend says:

    Wow, a lot of news for you to absorb and digest.

    Of course, what we’re all focusing on is the terrific results of clean margins! Yahoo!

    Little Bear’s keen instincts, and his mama’s are incredible, and it gives me goose-bumps every time I think of it.

    Clean. Margins. Oh. Yes. 🙂

  12. D... says:

    I am here from Bubba’s Sis’ blog.

    I am so happy for your good news! I am praising God! Clean margins on both. Awesome!

  13. Alison says:

    THANK GOD! What excellent news!! Beautiful words to read!!

  14. Amy says:

    We’ve always known that you’re a rare woman, but you’re taking it to extremes, don’t you think?

    I’m really excited about your margins!! YAY!!!!!

  15. Excellent news.

    (And your husband is a really good guy, isn’t he.)

  16. Mrs. Chicken says:

    I’ve known since your first post that you were a rarity – now it has been proven medically.

    Wow, Susan, that is just insane.

    Clean margins, thank God!

  17. KDF says:

    Well, most people walk around proclaiming themselves one in a million — now you can actually say that you’re one in 333,333 1/3 and know that it’s true!

    I was thinking about you so much yesterday, and kept clicking over, hoping to see this final, wonderful news.

    Damn, woman, you are just awesome. And you have done so much good for so many people.

    Now back to “normal”?!😀

  18. Arkie Mama says:

    That is FANTASTIC!! Congratulations! And thank you so much for all the information you’ve been providing.

  19. Little Monkies says:

    Coming out of the lurk to say WHOOOO HOOOOO!!!!

  20. jenifer says:

    What wonderful news! I hope you and WD go out and celebrate soon!!!!

    Congrats on the clean margins!

  21. I thought of you yesterday when I had my very first mammogram.🙂 I blogged about the whole thing and how important it is to have them done even if it’s not the most pleasant thing to do!

    Have you thought about playing the lottery?!?

  22. Meredith says:

    Congrats! That is such great news.

  23. kerynross says:

    Hoo-RAY! Congrats and kudos to your doctors, too.

  24. twithhoney says:

    The last sentence of this post has to be one of the most exciting, wonderful sentences I’ve read on your blog.

    Congratulations!!!!!

  25. nanci says:

    Well, I finally had to cave in and write you. I have been reading for quite awhile. I searched all over the internet for blogs about this particular cancer and as you know there aren’t that many out there. I have IBC in my left breast with Paget’s disease of the nipple and I had “regular” cancer in the right. However, I do not have insurance and don’t qualify for any programs to help me. So, I guess my chances of dying are 100%. Anyway, I just wanted to let you know how much I appreciate you for putting all this out there. I think of you often and pray for you, I just know you are going to be okay. Be strong.

  26. peppermint t says:

    Love those good odds.

  27. annette says:

    Wow. That is just strange. I guess it’s a lesson in trusing your gut instinct. Congratulations on becoming cancer-free!

  28. Sarah S. says:

    good news Susan! I am happy for your “all clear”
    I can’t wait to hear those words myself! Keep up all the positive thoughts. I am pulling for you and keeping you in my prayers.

    Sarah S.

  29. Bon says:

    and good riddance to it…all of it, apparently! i cried sitting at my desk yesterday when i read the words “clean margins,” Susan. i am so happy for you.

    now heal, and take good care of you.

  30. Amy S. says:

    Hurray!!! Welcome to the club of 10 million+ Americans alive today who nave had cancer and now don’t (I’m a card-carrying member myself)!!!

    Congrats!!!

  31. Kathryn says:

    Yeah!!!! Fabulous news! Congratulations!

  32. Robbin says:

    See, you are already an odds-beater!

    You may want to consider a lottery ticket…

  33. imstell says:

    I am speechless. I bet you’ve always been an over-achiever haven’t you… 😉 Mercy.

  34. MammaLoves says:

    I would never be able to tell you were a scientist. 😉

    Such great news!!

  35. Lauren says:

    Those odds are crazy! But this is great news. Be gone cancer. Be gone.

  36. Heather says:

    De-lurking to say congratulations!

  37. Traci says:

    GONE. Yes! Congrats.

  38. Mummycha says:

    So you got rid of two cancers in one day, you Superwoman!
    Thanks for the update, and, seriously, you should play the lottery!

  39. mom20902 says:

    That news is worth celebrating. And the fact that the chemo didn’t affect your ability to figure out the odds (that equation is WAY beyond me) is another reason to celebrate. You deserve this terrific news. WAY TO GO!!!

  40. M&Co. says:

    Great news! I’m glad for you.

  41. Leann I Am says:

    Wonderful news! Such a relef! Tears of joy are being shared with you today.

  42. binkytown says:

    Such awesome news. I can’t imagine the sigh of reflief you must feel. So very happy for you. What an amazing testimony to what a positive attitude can do. You beat this!

  43. MamaGeek says:

    There goes a BIG. EXHALE.

    Excellent news!

  44. MamaGeek says:

    I think I have permasmirk BTW.🙂

  45. Jacquie says:

    Gone is good! WTG WM

  46. giftofgreen says:

    Okay, stop with the math already. My history major brain can’t take it! Congratulations!!

  47. Emily says:

    Amen and Hallelujah to that!

    And Good riddance!

    {{Dancing a jig}}

  48. I just read about another woman who just gave birth who is battling cancer. Please read her.
    I immediately thought of you and the battle you have been through.

    http://www.ramblinroserm.blogspot.com/

  49. de-lurking to say “Yay!”

    Relieved to hear your good news. Hope it stays away forever.

  50. Danielle says:

    This is the best thing I’ve heard all year!!!

  51. Kat says:

    Praise God for whom ALL blessings flow!

    Thank you for getting the word out to so many.

    As a breast cancer survivor myself, I KNOW how elated you are. God is good.

    Hugs!
    Kat

  52. motherofbun says:

    YEAY!

    YEAY, YEAY YEAY!

    You are going to have one cute and sassy hair style by the time BlogHer rolls around.

    And that leads me to a question I’m sure EVERYONE has… Are ya going this year?

  53. Maggie says:

    WOOOOOOOOOOOOOT!!!!!!

  54. Carrie says:

    Susan, you are more that o in 3 million. You are more like one in a hundred billion.

    Whew!

  55. Carrie says:

    Susan, you are more than 1 in 3 million. You are more like one in a hundred billion.

    Whew!

    Sorry about the double comment, I goofed up the first time!🙂

  56. Stimey says:

    Unbelievable. I am thrilled beyond words that (both!) cancers are gone. But, really. How unbelievable is it about the other cancer? Thank God you chose the double.

    Congratulations!!!!

  57. Leeanthro says:

    Hooray for clean margins! That’s fantastic! I’m so glad you chose the double mastectomy to begin with.

  58. Oh, The Joys says:

    We are ALL so relieved and so grateful. Thank you for sharing this whole journey with us. You are powerful.

  59. Just a mom says:

    I am at the end of a VERY LONG like of comment and congrads. I come I read I pray. I am happy for you great job.

  60. Christine says:

    A cheer for you for it being gone! Yeah! And wow – those are some amazing odds. Maybe you need to go get some lottery tickets or something? Think it will rub off?

  61. Lisa says:

    XOXOXOXO
    We are thrilled for you! Can’t wait for our next adventure with you!

  62. I am looking forward to the day that, visiting your blog, there is a passing reference ‘oh yeah, I had breast cancer but I beat its arse’

    Soon these last few months will be a distant memory.

    Onward to the rest of your unbelievably wonderful life.

    Smootches.

  63. Ally says:

    Um, can I just say this superficial little comment? That thing you did with math? Amazing! 🙂 You must be a rocket scientist or something. Oh yeah, you are.

    Hooray for those clean margins. And since you never have been, and never will be, just a statistic, I am very hopeful that you’ve beat this cancer once and for all.

  64. musingmommy says:

    Wow…

    A true victory!

  65. Angela says:

    Congratulations! And you are lucky! I was going to suggest you play the lotto, but I think you already have and you WON!

    Hope you’re feeling really good already and that you’re drain-free pain-free soon.

  66. Bubba's Sis says:

    Halleluja!! I am praising God for you tonight! Way to kick cancer’s butt, girl!

    P.S. My mammo results came back clear!

  67. yertle says:

    Congratulations. That is fantastic!

  68. Emily says:

    GONE! WOOHOO!

  69. KillerBoob says:

    Huzzah for NED!!!

    My god that’s crazy. At least you never have to have 2nd thoughts about that 2nd mastectomy! You, my dear, were meant to get them off!

  70. Donna4k says:

    amazing! (and not just the math skills) so so excited for you…happy test results…happy test results…XOXO

  71. Becki says:

    I am so unspeakably happy that the margins were clean. So happy that the cancer is gone. So optimistic that you will survive for many, many, happy years.

  72. Susan K says:

    And good riddance!

    Great news.

  73. delilah says:

    Amazing news. So happy for you!

  74. I am very, very happy for you. Best news. I know that you are elated, relieved, and probably exhausted. How many emotions have you experienced to the fullest lately – very many, I am certain.

    *pumps fist in victory for you*

  75. I saw this on twitter yesterday too. I am so happy for you and for us (meaning all the people who so clearly love you)
    Congrats! (not on beating the odds – that was obviously not good in this case but on beating cancer)

  76. clmama says:

    This is the best news I have heard, confirmed, in a long time. Biggest congrats to you, times 10! Cheers all around. I hope you are having your drains removed this afternoon. I can not imagine that is comfortable in the slightest! My best to you!

  77. KG says:

    Wow. Wow. WOW!!! I’m so glad it is all gone.

    I’m still stupefied by the math you did. You sure have a good track record at beating the odds — keep it up!

  78. debi says:

    Thank you God. So many prayed.

  79. jerseygirl89 says:

    I am so full of joy for you.

  80. Lisa says:

    Such wonderful news! Very happy for you and your family😀

  81. Anon says:

    Susan, so very happy for you! One concern though – I’m a friend of the other IBC patient you mention. Did she tell you her diagnosis, and give permission to post?

  82. whymommy says:

    Anon, I found her diagnosis in a public archive when I was looking to see if anyone else had reported the combination of cancers. I’ll remove her (first) name if it’s a problem. I certainly did not include her last name, even though I know it.

  83. Anon says:

    Hi, and thank you! I greatly appreciate your writing. I heard about your site from the Washington Post. It has been so helpful as it gives some idea of what my friend may be facing, and your story is so hopeful. Thank you!
    (Also re posting as ‘Anon’… I actually have never posted before and so was concerned that it might generate e-mails from the broader internet community if I put in my e-mail address! You can see I’m not internet-literate.)

  84. Sheila says:

    That has to be one of the most beautiful phrases in the world. “Cancer Gone”

    How wonderful! Keep fighting, get stronger.

  85. Vint Falken says:

    Woot! Congratulations! Let the healing process begin, and if you ever wish to say ‘hi’ in Second Life again, I’ll buy you the neatest prim hair available!

    You’ve set a great example of courage here on your blog, despite the hard stuff you had to deal with, and I’m sure there are a lot of woman out there that will find this blog, your stories, your ‘win’ over this aweful decease a great and inspiring help.

    With admiration,
    Vint

  86. earthangel7 says:

    Susan, just read about your journey in the June HEALTH magazine. I am a 7 year, 2 week survivor of stage 4 IBC-mets to my spine. Have you ever sent e-mails to the IBC mail lists: IBC@LISTSERV.ACOR.ORG, and ibcresearch@mail.ibcresearch.org? We are a wonderful support group for IBC patients and caregivers and we are worldwide. So glad your story was written in HEALTH-we need to educate people about this rare disease and you are doing your part, that’s for sure. Charlotte in NC

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