Encouraging (to me) news about IBC:dealing with anxiety - how do others with IBC encourage themselve

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dbhadra
dbhadra Member Posts: 344 Member
in Breast Cancer #1
Hi all:

I know from your posts that some of you on the board have also been diagnosed with IBC like me. I was diagnosed on Dec 16, 2010 and am currently coming towards the end (yeah!) of my chemo. I made it through 12 Taxols and 2 FECs and have 2 more FECs to go. Then comes surgery, than comes twice a day radiation.

I have been feeling anxious lately about survival rates for IBC as it has lower survival rates and worse prognosis than other forms of breast cancer. The number that got stuck in my head is the 25-40% five year survival rate, and I kept thinking, what a bad prognosis, what a bad prognosis, couldn;t get it out. Last night I woke up at 3 am and went directly into a panic attack and had to take a pill to get back to sleep.

So today I started internet searching for some more information that might help me, and found this article which seems (to me at least) to present a bit more of a positive spin. One of the main reasons for the lower survival rates for IBC (at least as I read this) is that in many cases it is not even diagnosed until it is Stage 4.

http://www.ehow.com/about_5097834_inflammatory-breast-cancer-survival-rate.html

Positive things that I am telling myself today:

The cancer was diagnosed at Stage IIIB (skin and most likely some lymph node)

I have a fabulous doctor, Dr. Cristafanilli at Fox Chase Cancer Center who knows EXACTLY how to treat IBC, since that is his speciality

Common mistakes mentioned in the article: misdiagnosis as a breast infection, surgery before chemo, etc have not been made with me due to the guidance of Dr. Cristafannilli

I;m also reading survivor stories of those treated for IBC including those on this site and elsewhere.

How do others with IBC encourage themselves and stay positive about their outcomes?

Thanks!
Laura

Comments

  • Rague
    Rague Member Posts: 3,653 Member
    #2
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    I'm IBC
    And I'm very positive about my future.

    I do occassionally quote the 'rates' - but to me they mean nothing really. Either I will get reoccurance/mets or I won't so it's either 0% or 100% for ME (or actually any other individual - stats are a compilation of many but are not individual). I can't (nor can anyone else) get 25 % or conversly 75% cancer - either I have more or I don't.

    For me - I had 4 A/C - then surgery - then 12 Taxol and finally 25 Rads - will be on Femara for another 3+ years. Aug 8 will be 2 years post DX.

    From what I have been told is that IBC is VERY seldom (if ever) DX'd before at least Stage 3. Yes it is often mis-diagnosed initially - mine wasn't - my PA took one look at me and I was off to Radiology that afternooon (and needle biopsy). 17 days from seeing her I was starting A/C. It also presents other issues as it is very aggressive and can attack almost literally 'over night'. It also doesn't make nice 'blobs' - it nests/bands with no margin.

    Today - I do basically everything I ever did - well next month I'll be 65 so age prevents that being 100% true but I mow my yard with a push mower (actually have 2 other ones I do to help out people who deserve help - one young and one old) and do anything else I want to do (Next month I'll be doing the Volks Marche (apprx 10k) up to the arm of the Crazy Horse Memorial). We have horses and now that winter is trying to leave - I'll be working all, at least 3 days a week.

    Dwelling on the negative only makes for more negative thoughts. Rejoice in what you have. No one has any guarantee that tomorrow will come with no issues.

    Yes being IBC is 'different' - it is amazing how many think that BC = BC = BC - even here. It's all the more reason to stay postive.

    Susan
  • poplolly
    poplolly Member Posts: 346
    #3
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    DB,
    My diagnosis was
    DB,

    My diagnosis was metaplastic, triple negative cancer. I searched the internet, but I learned to look at current articles. The older ones don't show any current research. I'm like you, I've found some articles that say it may not be as grim as we might think. I just keep my mind occupied with other things, and dang-it-I take something to help me sleep at night. (Prescribed by a doctor)!!!!
  • Pattysmom
    Pattysmom Member Posts: 6
    #4
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    I'm IBC too...
    and as you can see, I'm new and have a ton of questions. I was dx stage 4 so the "link" was a little discouraging to me but I take one day at a time. I am almost one year from diagnosis and have finished my treatments and surgery. I think this site is wonderful and I wish I had found the forum sooner. Everyone seems so helpful. I'm sure you'll see a lot of topics started by me !!
  • Reikigemgirl
    Reikigemgirl Member Posts: 278
    #5
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    I too am IBC.....
    I had 4 rounds of A/C, surgery and then 12 weekly Taxotere treatments. I had only one lymph node involvement so I didn't have to have radiation.

    I don't think about the fact that my diagnosis is "worse" than anyone else's. I am stage 2B and I thank god that I had a doctor who recognizes IBC in it's early stages. Treatment was started within 3 weeks of diagnosis.

    I am going through reconstruction at this time so my energy has been focused on that.

    I tend not to dwell on the fact that it could come back. If it does, I will deal with it then. Until then, I will live my life to the fullest and just be happy I am still here.

    Love and Light,
    Vicki
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #6
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    Honestly, I'm not always
    Honestly, I'm not always able to stay positive. I find it especially hard when others with IBC get bad news, that brings up all the fears and worries.

    But usually I just don't spend a lot of time on the 'what if's' in life..I would rather deal with what is. I also tend to move very quickly into a plan of action...what steps to take to deal with whatever the problem is. For me, it is easier to keep the worries and fears at bay when I feel like I am doing something about the problem at hand.

    I hope this helps you.

    Hugs,

    Linda
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
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    I try to remind myself
    OThers much worse off then me...and go from there...

    I try to look a the good ...such as caught mine early etc...

    Denise
  • Texasgirl10
    Texasgirl10 Member Posts: 668
    #8
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    disneyfan2008 said:

    I try to remind myself
    OThers much worse off then me...and go from there...

    I try to look a the good ...such as caught mine early etc...

    Denise

    I'm trying to be positive
    I'm trying to be positive but after my pathology report last week I'm on an emotional rollercoaster.

    Hugs,

    Dawne

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