Is God Joking with Me Now

shaah2468
shaah2468 Member Posts: 72
edited June 2014 in IBC (Inflammatory Breast Cancer)

I think I am about to be diagnosed with IBC later this week.  All the symptoms seem to be there.  I first had breast cancer over 20 years ago, then it returned, and returned again, and now there is disease in the other breast.  Having had surgeries, radiotherapy, and tamoxifen in the past I was on Capecitabine since January and felt it was successfully slowlng things down considerably.  This last month I was hospitalized with two blood clots on my lung and a chest infection and my treatment was stopped for a month during which time the symptoms of IBC suddenly came on.  I have started back on Capecitabine until I get my tests done later this week.

I am looking for hope now and I have come across several women who have survived IBC for at least two years and one woman who survived four years.  I am living on my own now with my two cats and I am struggling like nobody's business to cope and keep on surviving.  I keep telling myself that I am still here despite everything and the fact that the blood clots almost killed me but didn't means it is not my time yet.

Anyone please have any more crumbs of hope they can throw my way? 

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  • MelissaAnn
    MelissaAnn Member Posts: 57
    edited November 2011

    Hi Shaah,  I'm currently trying to find out if I have IBC. I have a red rash on my breast that has been there 10 days and not improving.

    You are a true survivor that's for sure! Since you had a lung and chest infection, could you possibly just have a breast infection? Seems like it could be possible to me. 

    Whatever the outcome is, Keep on survivng. you're good at it :) There's women who are 10-15 years out of their IBC diagnosis.

    Hugs :)

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  • kiley56
    kiley56 Member Posts: 164
    edited November 2011

    Hi Shaah,  I have survived IBC 6 years.  Treatment was very hard on me but I struggled thru,  I also had 2 other breast cancers.  I am still here.   Some days are harder than others, but I go on, struggling with side effects at times but I put my faith in God.  One day at a time.  Lots of things have tried to kill me as well, but I am here......I live on my own as well, with my dog and cat..............but have great man friend who helps me alot.   wishing you well shaah,  Kiley

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited November 2011

    Shaah,

    I'm about 2.5years out.  They are getting a better handle on this and ibc patients are living longer lives.  Still hope your diagnosis does not come out ibc.  Thinking about you and Mel this week.

    Terri

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited November 2011

    I spoke to a woman 16 years out this weekend.  When she was dx, there was a 0% survival rate.  She is here, doing great. She gave me such great hope. I don't wish this on any of us, but they are getting better at all of this.

    I wish the best for all of us.

    Nel

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  • anonymice
    anonymice Member Posts: 532
    edited November 2011

    I was diagnosed with IBC in September, and declared cancer-free the following May - complete biopsy on both breasts and nodes.  My very first day of chemo, I was visitied by a lady who was there for her **25** year follow up with IBC.

    IBC is terrifying disease but it is NOT what it was.  The reason people generally died from IBC in the past is that it just wasn't recognized as cancer, but was thought of as an infection until it was far too late.  This would not be the case with you.  It is incredibly aggressive and fast, but the flip side of any "fast" cancer is that it is often very treatable by chemo.  The faster a cell multiplies, the more deadly chemo is to that cell.

    You have been through the mill and back out, no doubt.  But there is a lot of hope with IBC these days.  In fact, we are the first generation of folks that are really surviving it.  You will see no statistics reflecting that - at least not for another 10 yrs or so.  But it is true.  There is hope.

      

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited November 2011
    I know someone i met when i was going through chemo and she is at least 7 years out now, had a few pos nodes.
    Laura
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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited November 2011

    Pam,

    Love the 25 year follow up!!  Youmade my day.

    It makes sense that if they weren't catching it, it became deadly. I like that theory, hopeful and positive. I consider myself pretty knowledgable, but never heard of it until I was DX in the fall.  Go figure.  And so gratful to live near hospitals and docs who knew what it was pretty quickly. 

    Gentle hugs to all

    Nel

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2011

    Had high-school reunion recently, and was talking to a friend about what our lives have been like in the years in between. I said, I hadn't had the most fun, as I was recently out of BC treatment, but that I was fine. Dee's answer was that she was now 18 years out from IBC treatment, and that she, like most BC survivors, is just fine today!

     Hope this helps.

     Sue

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  • shaah2468
    shaah2468 Member Posts: 72
    edited November 2011

    Thanks everyone for the support and information on suvival of IBC.  Some of those ladies did amazingly well.  Here I am going to nit pick now, but I wonder if women have better survival rates with IBC if it is their first brush with cancer.

    I saw my oncologist today and I wish I knew what the heck she is talking about sometimes and if I can trust her.  Among my other symtoms the area between my collar bone and the top of my breast is very swollen and she said because the breast is getting so hard and tight it is pushing everything else up.  What??  She is certain the cancer is progressing in both breasts now but not sure if it has mutated into IBC.  Lymph nodes are probably involved now too.  Oh, and it's official now that after only 10 months the Capecitabine has stopped working.

    Tomorrow I am having an ultrasound and a biopsy to see what's what and then on to the next treatment.  Spare a thought for me please.  Thanks.  Shaah

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  • kiley56
    kiley56 Member Posts: 164
    edited November 2011

    So sorry Shaah you are going  thru this.....I will be thinking about you....Take Care....Kiley

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  • MelissaAnn
    MelissaAnn Member Posts: 57
    edited November 2011

    Just prayed for you Shaah <3 Hugs

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  • shaah2468
    shaah2468 Member Posts: 72
    edited November 2011

    Thanks for the prayers again.  Today I had an ultrasound or scan or whatever it was called and my doctor said there was some progression in the original breast but that the second breast is progressing locally faster.  I am still going over the chronocological order of things.  While on tamoxifen the original breast improved loads and no sign of disease in the other breast.  Soon as the tamoxifen stopped working symptoms back in the first breast and sign of disease suddenly appeared in the other.  On capecitabine both breasts improved alot and when that stopped working the original breast shows regression and the second breast progresses faster.  My doctor did not mention IBC today and neither was I feeling brave enough to ask. 

    Before today the plan had been to try me with Faslidex but now I am starting IV chemo next week and I am very distressed. I was hoping to avoid that eventuality for another year if possible.  So tomorrow I start wig shopping but I will be trying the cold cap treatment just in case it spares me losing my hair.

    I was supposed to have a biopsy today as well but by that time I had a major tantrum and stormed out.  Having cancer for the fouth time is just as hard as going through it the first time and I am getting awfully tired of it all now and have some serious thinking to do.

    MelissaAnn I hope God gives you better news.

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  • SheChirple
    SheChirple Member Posts: 954
    edited November 2011

    WOW...I can't get past "I first had breast cancer over 20 years ago".....you give this newly diagnosed lady hope....♥

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