Thursday, August 14, 2014

Prognosis Data

More recently I’ve had trouble staying positive and not being scared. This is directly correlated with the amount of internet research I've done on IBC stuff. I’ve had everyone close to me over the last week essentially ban me from the inter-webs. However, I'd like to argue that learning this stuff and coming to grips with the situation at hand isn’t necessarily a bad thing.

The first few weeks of all this were actually pretty great- no real symptoms to speak of, lots of cards, fun gifts, and nice messages. You almost forget for a second the reason all this love is getting showered on you- oh yeah, I have a death sentence on my life at the moment! I deep down truly believe I’m going to make it, that God is going to perform an amazing miracle and get all the glory for saving my life. So you take that on top of getting told multiple times a day that- “You’ve got this!” “Cancer doesn’t know who it picked to mess with!” “You are going to beat the odds Ashleigh!”…and soon you forget how grim the situation actually is.

All that to say, I don’t think a reality check was totally out of line this last week. For me, understanding the data and stats is part of my DNA (anyone that knows me personally will be nodding their head right now). There are currently three known hormone receptors on breast cancer cells- estrogen, progesterone, and HER-2. These describe how the cancer cells are fueled to grow. If you have one of these receptors, the doctors can use targeted therapies to decrease your cancer's ability to grow. If you have none of these receptors (aka triple negative), then it is unknown what is fueling your cancer cells and therefore your cancer will not respond to these targeted therapies.

I found a paper from MD Anderson that described the prognosis of patients like me, IBC & triple negative, vs. IBC & hormone receptor positive patients. The conclusion of the MDA paper was that the outcomes for IBC folks are much worse for triple negative than other hormone receptor types. Below is a chart from the paper that shows survival curves for 316 women with non-metastatic IBC that were treated at MDA with similar drugs and treatment as I will receive. The four lines represent four subtypes of hormone receptor status in the study - triple negative (TNBC), HER-2 positive (HER-2+), estrogen positive (ER+), and both ER and HER-2 positive. The y-axis (vertical) is the % of people still alive and the x-axis (horizontal) is the number of years.  Here are my thoughts on the data (you can click on the picture to make it bigger fyi):
For anyone whose eyes glazed over at the chart, the takeaways are:
  • IBC triple negative folks treated at MDAnderson in more recent years have a 50% chance of making it 2 years and 42% chance of making it 5 years, while the other IBC subtypes are significantly higher, for example IBC HER-2+/ER+ has a 73% 5-yr survival rate
  • After 5 years, the other subtypes often have the cancer show back up making the survival curves continue to go down. For the 42% of triple negative patients that make it to 5 years, cancer rarely shows back up for them.
  • My plan is to make it to 5 years, throw a giant 5th bday party for David, and then put all this behind me. If I make it past the 2 year mark, I can essentially move on with my life at that point. Sounds great, right?
While the stats did freak me out at first, I know how probabilities work- while there is a % prognosis, I will be either a 1 or a 0- alive or dead in 2 / 5 years. Seeing blogs or supposedly "survivor" stories of IBC patients that have passed away is obviously depressing, but some of these women do make it through. Why can't it be me? In fact, after searching for survivor stories and only finding ones where the women ended up passing away, my friend Jamie hooked me up with an IBC triple neg survivor contact:

I spoke with Michelle, the first fellow-IBCer I've met, for an hour this week. She first started having symptoms when her fourth child was 2 weeks old. She was misdiagnosed and on medicine to treat "an infection" for 9 months(!!). She had 24 positive lymph nodes in her armpit and some under her breastbone. So there she was with the worst of the worst breast cancer, single parenting 4 kids under 6 years old. She didn't have a complete response (there was cancer still there after the chemo) and the surgery didn't have clear margins (the surgery did not remove all the cancer). Her doctor put her on an experimental chemo drug that ended up saving her life. That finally cleared the cancer up, they radiated the heck out of it, and she is still here six and half years later- praise the Lord!!

Talking with an IBC survivor out past the 5 year mark definitely helped this week. Michelle's main piece of advice was to focus less on the stats and more on caring for your kids. I will try to limit my IBC-research in the future and not focus so much on the "stats". But I will say this, now knowing the stats, if I do make it, everyone will know that it truly was a miracle!

"Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead." - 2 Corinthians 1:9


  1. You know I like numbers too - and I'm glad to understand what this "triple negative" term means. I'm praying for you friend. I'm praying that God shows himself mightily in beating these odds, and that this research helps you - by letting process and then keep on living life.

    1. شفط الصرف الصحي بالدمام
      اقبل الشتاء وسيواجه اهالى مدينة الدمام مشكلة من اصعب واخطر المشكلات المتعبة
      أولها انسداد بيارات المجارى وانسداد شبكات الصرف الصحى وهى المواسير
      و يعانى من هذة المشكلة الجميع ويظلون فى البحث عن شركة رائدة متخصصة فى اصلاح كافة المشاكل الخاصة باعطال انسداد المجارى
      ونحن شركة تسليك مجارى بالخبر لدينا من الخبرات الكبيرة التى نكتسبها من اعمالنا السابقة نؤكدلك عملينا العزيز أننا وبكل جدارة وخبرة
      افضل شركة تسليك مجارى بالدمام رخيصة التكلفة وفى نفس الوقت ماهرين فى العمل
      تعمل الشركة بافضل الطرق الحديثة والاساليب المتطورة علي ايدي افضل العاملين والمتخصصين في هذا المجال
      حيث ان الشركة تمتلك طاقم عمل مدرب علي اعلي مستوي علي ايدي خبراء ماهرين وفنيين محترفين
      حيث لاتتواجد هذه المواد الخاصة بالعمل الا داخل شركتنا فقط وهذه واحده من اهم ما يميز
      افضل شركة تسليك مجارى بالدمام عن غيرها من باقي الشركات الاخرى المنافسة فى المجال
      كما يوجد لدينا العديد من الخصومات الهائلة فنقدم خدماتنا باقل الاسعار التى تتناسب مع جميع عملائنا الكرام
      يوجد لدينا فنيون ومهندسون وخبراء مدربون على اعلى مستوى
      وذلك حيث يمكنهم معرفة تحديد الاسباب التى تتسبب فى انسداد المجارى ولان من اصعب الاشياء هو انسداد المجارى الخاصة بالمنزل فهو يوقف الحياه بالمنزل
      و يتسبب فى مشاكل فى غاية الخطورة لاننا دائما نستعمل الحمامات والمطابخ
      وعند انسداد المجاى تتوقف الحياه كما ينتج عنها الروائح الكريهه التى تضر بالمنزل
      وايضا انسداد المجارى وذلك ينتج عنها اضرار خطيرة بالمنزل نفسه من تسربات بالمياه وتحت البلاط وتسربات بالجدران
      فلا تقلق عملينا العزيز من كل ذلك فلدينا المهارة والخبرة العالية فى اعمالنا لحل كل ذلك .

  2. I understand the need for knowing the numbers, and I like how you turned the meaning of the numbers to how it will glorify God. Praying daily for a miracle for you and praising God that the numbers mean nothing to Him!

  3. Hi. Your story is remarkable. How are you doing?

    1. I was wondering the same thing. I have IDC er+/pr+ her2- breast cancer but a good friend of mine has triple negative IBC.

  4. Sadly she did not make it.

  5. My grandmother was diagnosed with IBC in September of 2015 and passed away in April of 2016 .. although the journey was hard she put up a strong fight... needless to say she died trying to fight it.. she will always be a fighter in my eyes... Fly HIGH Beautiful Angel !!

  6. My grandmother was diagnosed with IBC in September of 2015 and passed away in April of 2016 .. although the journey was hard she put up a strong fight... needless to say she died trying to fight it.. she will always be a fighter in my eyes... Fly HIGH Beautiful Angel !!


  7. شركة نقل اثاث بالدمام التفاؤل شركة نقل اثاث بالخبر كما انها افضل شركة نقل اثاث بالجبيل نقل عفش واثاث بالجبيل والخبر والقطيف والدمام
    شركة نقل اثاث بالدمام
    شركة نقل اثاث بالجبيل
    شركة نقل اثاث بالقطيف


  8. اهم شركات كشف تسربات المياه بالدمام كذلك معرض اهم شركة مكافحة حشرات بالدمام والخبر والجبيل والخبر والاحساء والقطيف كذكل شركة تنظيف خزانات بجدة وتنظيف بجدة ومكافحة الحشرات بالخبر وكشف تسربات المياه بالجبيل والقطيف والخبر والدمام
    شركة تنظيف خزانات بجدة
    شركة مكافحة حشرات بالدمام
    شركة كشف تسربات المياه بالدمام


  9. اهم شركات نقل العفش والاثاث بالدمام والخبر والجبيل اولقطيف والاحساء والرياض وجدة ومكة المدينة المنورة والخرج والطائف وخميس مشيط وبجدة افضل شركة نقل عفش بجدة نعرضها مجموعة الفا لنقل العفش بمكة والخرج والقصيم والطائف وتبوك وخميس مشيط ونجران وجيزان وبريدة والمدينة المنورة وينبع افضل شركات نقل الاثاث بالجبيل والطائف وخميس مشيط وبريدة وعنيزو وابها ونجران المدينة وينبع تبوك والقصيم الخرج حفر الباطن والظهران
    شركة نقل عفش بالرياض
    شركة نقل عفش بالطائف
    شركة نقل عفش بالدمام
    شركة نقل عفش بجدة
    شركة نقل عفش بمكة
    شركة نقل عفش بالمدينة المنورة
    شركة نقل عفش بينبع
    شركة نقل عفش بالخرج
    شركة نقل عفش بالقصيم
    شركة نقل عفش بخميس مشيط
    شركة نقل عفش بتبوك
    شركة نقل عفش بابها
    شركة نقل عفش ببريدة
    شركة نقل عفش بنجران
    شركة نقل عفش بحائل
    شركة نقل عفش بالظهران
    شركة نقل عفش واثاث
    شركة نقل عفش


  10. افضل شركة نقل اثاث بالمدينة المنورة

    بادروا بالحصول علي اقوي عروض الاسعار علي جميع خدماتنا في نقل العفش
    بالمدينة المنورة
    افضل شركة نقل اثاث بالمدينة المنورة

    هي شركة فرسان الخليج حيث نعتمد علي امهر الفنيين في فك و تركيب العفش دون اي اضرار
    به و احدث السيارات المجهزة المزودة بامهر السائقين و الذين علي دراية بكل طرق
    المدينة المنورة

    شركة فرسان الخليج شركة نقل عفش بالمدينة المنورة من الباب للباب
    باسعار لا تقبل المنافسة

    نقل عفش بالمدينة المنورة

    اتصلوا بنا

  11. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on don't be shy just speak to her today.

  12. افضل شركة نقل اثاث بالمدينة المنورة
    شركة فرسان الخليج هى كبرى شركات نقل الاثاث والعفش بالمدينة المنورة لدينا العمالة المدربة على خدمات نقل الاثاث كما اننا لدينا جميع سيارات نقل العفش التى تجوب جميع شوارع المدينة المنورة ونقدم خدماتنا بارخص الاسعار

    اسعار شركات نقل العفش بالمدينة المنورة


  13. شركة نقل عفش بالطائف

    شركة المنزل هى شركة نقل عفش بالطائف لدينا العمالة المدربة على جميع خدمات نقل العفش بالطائف كما اننا لدينا السيارات المجهزة لنقل العفش ونستخدم اجود انواع الروافع التى تساعد على نقل العفش بالطائف وبأرخص الاسعار .

    شركة نقل اثاث بالطائف


  14. شركة نقل عفش بالطائف

    شركة المنزل هى شركة نقل عفش بالطائف لدينا العمالة المدربة على نقل عفش بالطائف كما ان لدينا السيارات المجهزة لنقل العفش واحدث الروافع اليدوية والكهربية التى تساعد عمالتنا فى عملية نقل العفش كما نقوم بتغليف العفش للمحافظة عليه من الكسر والخدش مع تقديم خدماتنا بأرخص الاسعار

    نقل عفش بالطائف


  15. شركة نقل عفش بالطائف

    شركة المنزل هى شركة نقل عفش بالطائف لدينا العمالة المدربة على جميع خدمات نقل العفش كما اننا نمتلك الاوناش والروافع والسيارات التى تقوم بنقل الاثاث بالطائف ولدينا خدمات تخزين الاثاث بالطائف حيث اننا لدينا المستودعات الكبيرة والخالية من الحشرات والمؤمنة ضد الحرائق والسرقات كما اننا نقدم جميع خدماتنا بأرخص الاسعار
    شركة نقل اثاث بالطائف

  16. It has been a while since this kind of a post surfaced, it was great to have found it. One thing about this post is that it has very few details yet very presentable and communicating. Thank you and keep sharing.
    Web Articles Writing Help

  17. Diagnosed Sept 2016 IBC stage3 Her2+ Chemo and mastectomy Apr 13 2017. Suppose to b Cancer free but starting radiati0n in 2 weeks and back on Herceptin.Can not find any other folks with IBC so thank u or sharing. Ben on 5 chemos and I look like a disaster and feel the same. If God wants me I am ready. God Bless u all..


    his product is by far the best plan for treating fibroids naturally...the practical step by step instructions and the detailed information regarding the real cause and how to treat uterine fibroids were a real eye opener. I started dr williams medication after intense bleeding and pain which occurred during one of my rehearsals (I am a professional violinist).I was later that week diagnosed with 2 medium sized fibroids which placed an enormous pressure on my bladder. I was advised by 3 different doctors to undergo surgery to remove these fibroids as I was told that there was nothing I could do to shrink or stop their growth. Luckily, I ran into dr williams by accident as I was searching for information on the net regarding my condition. I was so relieved to have found that surgery was not always the answer, that it can be dangerous and that uterine fibroid can return even after surgical intervention. In less than 4 weeks of taking dr williams herbal portion and following his instruction, both of my fibroid had shrunk by 100% and the second ultrasound taken 7 weeks after I began taking dr williams medication, had shown that both of these were completely gone. I also my periods became regular. and now am three months old pregnant, you can contact his email address on for advice and for his product