How can this happen???

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SoapMaker
SoapMaker Member Posts: 157
edited June 2014 in IBC (Inflammatory Breast Cancer)

My daughter was diagnosed with IDC, in December. Triple neg and`no positive nodes. She had lumpectomy, finished chemo in early April and then finished rads at the end of May. Just recently, her breast became swollen, has stabbing pains, itching, non-stop aching in the breast, and an inverted nipple. Just today, the redness appeared. It is so hard for me to believe that she JUST finished rads, which should have killed any remaining bc cells in the breast skin...and now it appears that she could have IBC. I am praying it is an infection (cellulitis or mastitis). Her job just changed ownership and they are in the process of deciding who they will keep and who they will terminate. If she has to start chemo, again, she won't have a chance. That means she will not have any insurance coverage to battle this demon. I pray for you all...please pray for us.

PS...I am a 6 yr triple neg bc survivor. My daughter is also triple neg, though BRCA test showed that it was not inherited. I wonder how good that test really is?

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Where is the cureCry

www.truefacesofbreastcancer.org

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  • Jen44
    Jen44 Member Posts: 631
    edited August 2008

    Cin56,  I am so sorry that you and your daughter are having to go through this.  I have a 15 year old daughter and that is one of my worst fears, is that she may have to deal with this some day.  I know it sounds strange, but I will be praying it is just an infection.  Is she calling the doctor today?  Make sure she lets them know she needs to be seen right away and don't let them schedule her for later in the week.  I agree that it would be really strange for something to show up right after the treatments.  If she just finished radiation it could be a reaction to that.  I didn't blister until the day after my radiation was complete.  I will be keeping you both in my prayers.  Let us know how things turn out.

    Gentle Hugs,

    Jenny

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  • cm1122
    cm1122 Member Posts: 12
    edited August 2008

    Dear Cin, I am praying for your daughter. I have a similar story: Diagnosed in Sept 2007 with IDC, Lumpectomy, 2 positive nodes, chemo and rads finished in May. In June, my breast became totally red. Doctor diagnosed mastitis (thank God) and put me on antibiotics. July 14, went back to see him, still pink but much better. Then it started getting red again, went to see doc, back on antibiotics for a longer period this time. Almost done with antibiotics, but it's still red. Next step, biopsy???  BUT both my oncologist and my surgeon who have seen me say the odds of it being IBC are infintesimal. I know how scared you and your daughter must be, keep the faith and keep us posted.  Hugs to you both...

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  • dhettish
    dhettish Member Posts: 501
    edited August 2008

    Dear Cin56,

    Since she finished rads and rads works from the inside out, it possibly is complications from the rads. I pray she will be all right. As for losing her job, if this happens, she should be eligible for COBRA insurance coverage in which she pays the premiums. I had bone cancer in my 20's and lost my job and got enough COBRA to finish my treatments and my reconstruction. I had bone cancer and lost my right jaw.My coworkers took up a collection to pay for 3 months coverage and my church paid for 2 months. My parents paid for some and I used my income tax refund to pay for more. Somehow, the money was always there even though I had no money.

    I am not sure if you believe in God, but if you do, hang on tight. He will always help us get through these very tough times.

    Please let us know how she is doing and what the doc says. I am so sorry you and your daughter are having to go through this. Fear and waiting are the worst.

    Debbie 

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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2008

    Hi Cin,

    I am hoping that the swelling and redness is from the radiation. I have heard of radaition recall and this sounds like a possible explanation. Saying a prayer for NO cancer. Give her a hug from all of us.

    Hugs and Prayers,

    Lexi

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited August 2008

    Thank you all so much for your thoughts, prayers and well wishes. I can't seem to stop my guts from churning. Jen, that was one of my greatest fears, also. I posted on that years ago. I have two daughters and one grandaughter. What I feared has now come to pass and I am living the BC fear for my daughter as I had lived it for myself. It's like I'm going through it all over again. DD was 39 when first diagnosed. cm,,,I wish you the very best outcome with your upcoming biopsy.

    Debbie, bless your heart. You have really been through the ringer. You are so lucky to have had so much help with your COBRA. My daughter won't be able to afford COBRA. I'm tapped out from her first round. She was diagnosed in December and had that huge copay...then in January, had to pay that huge copay all over again. There isn't any more help. She's a single mom and the money just isn't there. I have no idea what she will do if she loses her job. It will be a great miracle if this turns out to be something else, as she has all the symptoms of IBC.

    Lexi, I hope you are right, I remember I had itchiness and horrible rash a couple years out...but that was it. No swelling, redness, pain or thickness. I STILL have problems with rashes and itchiness popping up periodically. I scratch until I bleed. I have to keep Hydrocortisone on the breast in order to keep my sanity.

    DD will be calling doc, today, to get an appt. I will let you know when I hear something. Thanks again.

    CORRECTION: DD actually finished rads end of June. I mistakingly said end of May.

    ----------------------------------------------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited August 2008

    Phone call from DD. She was able to get in to see the doc. She said he thinks it is mastitis. I had told her to tell the doc to check for IBC, so she asked him about it. He told her he couldn't do a biopsy because if it is an infection and he cuts, then the infection will get into the skin. He told her to take the antibiotics for 10 days. So...at this point, I don't think he really knows. He is prescribing the antibiotics to rule out, one way or the other. I told my DD if there is no change after taking the meds then it is probably going to be something else and she needs to get back in to see the doc, My worry is not gone, but at least he didn't come out and say it was IBC. At least I still have hope that it isn't. Many blessings.

    ------------------------------------------------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2008

    I don't have any words of advice for you, but I just wanted to tell you how sorry I am, and how difficult this must be for you and your daughter.  Just remember that IBC is very often diagnosed as mastitis, and if it doesn't get ALL THE WAY better with anitbiotis, more checking needs to be done.  My IBC showed improvement with the IV antibiotics, but my breast never returned to its formal normal color and firmness, and all of the other symptoms came along i.e. thick dimpled skin, redness and purplish bruise appearing skin, inverted nipple, itching, burning, stabbing pain, and it progressively got worse.Please keep us posted, and ask if you have any other questions.  Sometimes I feel like us women with IBC are the true experts on it, because we have seen it, lived with it, dealt with it, and these doctors haven't even seen it a lot of the time!!!!

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  • Jen44
    Jen44 Member Posts: 631
    edited August 2008

    Cin56,

    I am glad that DD called the doctor.  I will keep praying that the antibiotics work and it is nothing more than an infection.

    Gentle Hugs,

    Jenny

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited August 2008

    Yes, keeping a prayer it is NOT cancer and that it only an infection or SE's of Rads.  I've read before that this can happen months later with rads, so Hoping it's that! 

    So sorry you are both dealing with this.  Is she seeing a regular PCP or her breast surgeon about this?  Hopefully it's the breast sugeon and at a breast clinic and not a regular one?

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited August 2008

    Thanks again for your continued thoughts and prayers. Yes, she is seeing a breast surgeon. I did tell her that docs do not see a lot of IBC and therefore they misdiagnose a lot. I also told her that she has to stay on top of it and not take the doc's word as gospel. Sorry to say that, but it is true. I told her that she has to look out for herself. That is when I told her to get back to the doc asap, if the meds don't work. She has a followup, but I don't even want her to wait that long, if no relief.

    Sun...she has all of the symptoms and that is why it worries me so. She even has the inverted nipple, but doc says probably scar tissue. Don't worry, "mom" will push and push until everything is looked at and taken care of as it should be. Thank heavens I went through bc before she did. I can oversee, from a distance, if she is being taken care of properly.

    ---------------------------------------------------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited August 2008

    Sending you and your DD powerful prayers from our little group.  This must be B9!

    Cin56,

    I did have my first inflammatory recurrence just one week after completing rads.  Yes! bc can live through the rads.... Did she speak with her onc or surgeon? (like wishiwere mention.. hopefully not her PCP) They should setup her a for a "punch" biopsy very soon.  They will try and do this not in a real inflamed area if they can.  The antibiotic should help this heal if it is something else.

    We hope to hear from you soon...with GOOD NEWS!  May God bring you both peace as you wait these next fews days.  We know how horrible this waiting can be.

    Flalady

    Flalady

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited August 2008

    Thanks Flalady. She will have a biopsy if it doesn't clear up. She is seeing her BC surgeon, not pcp. I will post any updates.

    So sorry to know that your IBC appeared so soon after rads...or even that it appeared, period. Why do they even put us through rads if they don't work!? Sending thoughts and prayers your way...and for all of us fighting this battle.

    Geeeeeze! I just saw that you have had 7 recurrences. Bless your sweet heart. You hang in there, sweetie. You kick cancer's a$$.

    ---------------------------------------------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited September 2008

    UPDATE- Doc started DD on second set of antibiotics (different), because the first ones didn't work (gulp). She was sent for ultrasound and xray of lungs because it was hard for her to breathe (double gulp). Well, they found that she had a huge abcess in the breast. NO IBC!!! Thank God. They drained it, today, and she will continue on the antibiotics for a while. Now we wait for pathology to make sure no cancer cells. Many blessings to you all.

    ----------------------------------------------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited September 2008

    Cin56:

    Any news on the pathology yet?  Keeping my fingers crossed for b9 results.

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited September 2008

    Thanks Caseysmom. DD has not said anything more about it, so I figure no news is good news. Had there been any bad cells, they more than likely would have called her by now. If we don't hear anything by end of next week, then I think all is well.

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • Maryiz
    Maryiz Member Posts: 975
    edited September 2008

    Cin56, It is so heartening to see you looking out for your daughter.  I am sick of this disease, to me, it is epidemic.  These women and men are too young for this disease, actually, no one should get this horrible disease with all of its physical and emotional side effects.  I am with you, we need a CURE.  I am sorry she has to deal with financial problems.  Please check with the American Cancer Society in your area to see if she qualifies for any financial assistance.  Stay well, Maryiz

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited September 2008

    Thanks Maryiz. So far, she still has her job and may be one of the ones the new company is going to keep. Fingers crossed. Many blessings.

    Where is the cureCry

    www.truefacesofbreastcancer.org

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