Inflammatory Breast Cancer after treatment

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julieanne
julieanne Member Posts: 12
edited March 2014 in Breast Cancer #1
I have written before about this on-going inflammation on the breast I had breast cancer in and finsihed treatment in January, 2002. For 7 months it has gotten hard, warm and big. I am going in for a biospy in a week to rule out imflammatory breast cancer and my other problem is the surgeon said I am at extreme high risk Of the procedure getting infected and that could pose another problem. Double-edged sword wouldn't you say, does it ever end. If I do have it I have been reading that it would be more chemo and masectomy. Has anyone experienced this. Others have written me but no one has said they have had it, help..

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  • prayerangel
    prayerangel Member Posts: 147
    #2
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    I haven't had what you have, but was wondering HOW the doctors have helped you in the past 7 months. Have you looked it up in Dr. Susan Love's Breast Cancer Book? If you just search the internet with the words "inflammatory breast cancer" can you come up with loads of info that could help you? Wouldn't they treat you with antiobiotics BEFORE doing a surgery so that you wouldn't get an infection? Did you have a lumpectomy to begin with? Best of luck. Keep the questions coming. We'll be here with the love and concern...
  • julieanne
    julieanne Member Posts: 12
    #3
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    prayerangel said:

    I haven't had what you have, but was wondering HOW the doctors have helped you in the past 7 months. Have you looked it up in Dr. Susan Love's Breast Cancer Book? If you just search the internet with the words "inflammatory breast cancer" can you come up with loads of info that could help you? Wouldn't they treat you with antiobiotics BEFORE doing a surgery so that you wouldn't get an infection? Did you have a lumpectomy to begin with? Best of luck. Keep the questions coming. We'll be here with the love and concern...

    Thank you for responding. Yes, they put my on antibiotics, steriods and they even had me call my original surgeon in Orange County to see if she had any insite. she was the one that said that they need to rule out IBC. My Oncologist already thought of it but was hoping the steriods would help. I also had a ultrasound showing no fluid or infection and a MRI which showed nothing, so they have tried other ways to see what is going on. If it is not IBC, the surgeon said I could have this for a very long time. It is so painful and burns daily. I did look up IBC on the internet and the first picture they show looks just like it, but God has gotten me this far.. Thanks again :)...Julieanne
  • neenie
    neenie Member Posts: 13
    #4
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    Julieanne -

    I'm so sorry that you have to go through this. I'm a 6 yr. inflammatory breast cancer survivor. I was diagnosed with this rare ailment a month before my 40th. birthday. I had 4 sessions of chemo as an outpatient over a 3 month period, then a mastectomy. After the surgery, I was on chemo for another 9 months. I can't remember the names of the medications, but I remember taking one pill daily and going to the doctor's office weekly for an injection. After the chemo, I had 6 weeks of radiation. Thanks to modern medicine and a great team of doctors, I'm doing well today. Think positive thoughts. Neenie
  • julieanne
    julieanne Member Posts: 12
    #5
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    neenie said:

    Julieanne -

    I'm so sorry that you have to go through this. I'm a 6 yr. inflammatory breast cancer survivor. I was diagnosed with this rare ailment a month before my 40th. birthday. I had 4 sessions of chemo as an outpatient over a 3 month period, then a mastectomy. After the surgery, I was on chemo for another 9 months. I can't remember the names of the medications, but I remember taking one pill daily and going to the doctor's office weekly for an injection. After the chemo, I had 6 weeks of radiation. Thanks to modern medicine and a great team of doctors, I'm doing well today. Think positive thoughts. Neenie

    Thanks for responding Neenie,
    What were your symptoms? Did you get it after having breast cancer? Please tell me alittle more.. thank you..Julieanne
  • neenie
    neenie Member Posts: 13
    #6
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    julieanne said:

    Thanks for responding Neenie,
    What were your symptoms? Did you get it after having breast cancer? Please tell me alittle more.. thank you..Julieanne

    Hi Julieanne -

    I remember that I had some pain in the breast for a few months and it got hard over time. I also had some crustiness develope around the nipple about a month before I was diagnosed with breast cancer. I didn't run to my doctor, probably because I was in denial. I had myself believing that it was only a cyst. By the time I saw my GP, it had spread to my lymph nodes. No nodes were removed for testing because the oncologist felt a lump in my armpit. This was my first and only bout of breast cancer. Thanks to a great team of doctors and aggressive treatments, I'm doing well 6 years later. I forgot to mention before that I've been taking tamoxifen for almost 5 yrs., which I'll stop taking in about 2 months. I know it's difficult, but try to keep a positive attitude. I hope this information helps. Neenie
  • nbahl
    nbahl Member Posts: 1
    #7
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    I was diagnosed with inflammatory breast cancer in July of 1997...my story is on the list (nbahl- Oh, no) Please follow up with an oncology breast specialist, and a breast surgeon...that way you'll be sure they know what they're seeing, and can give the best advise. Please follow up, as you can see, it will be 6 years for me in July. At the time, I had a 18% survival chance. I guess I showed them, you can too. Nancy Bahl, New Jersey
  • tabsmom
    tabsmom Member Posts: 1
    #8
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    neenie said:

    Julieanne -

    I'm so sorry that you have to go through this. I'm a 6 yr. inflammatory breast cancer survivor. I was diagnosed with this rare ailment a month before my 40th. birthday. I had 4 sessions of chemo as an outpatient over a 3 month period, then a mastectomy. After the surgery, I was on chemo for another 9 months. I can't remember the names of the medications, but I remember taking one pill daily and going to the doctor's office weekly for an injection. After the chemo, I had 6 weeks of radiation. Thanks to modern medicine and a great team of doctors, I'm doing well today. Think positive thoughts. Neenie

    inflammatory breast cancer
    Hi Neenie.
    After about a year of getting sent away from doctors and OBGYNs I was diagnosed on October 1, 2009 with inflammatory brest cancer. I have had two chemo treatments and have my third one tomorrow. They plan on twelve weeks of chemo, a mast surgery then sic weeks of radiation. My hair started falling out yesterday. I have an eleven year old. I am trying to be strong for her. I want to live. You are an inspiration. Please give me any suggestions you can.
    Michele
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #9
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    tabsmom said:

    inflammatory breast cancer
    Hi Neenie.
    After about a year of getting sent away from doctors and OBGYNs I was diagnosed on October 1, 2009 with inflammatory brest cancer. I have had two chemo treatments and have my third one tomorrow. They plan on twelve weeks of chemo, a mast surgery then sic weeks of radiation. My hair started falling out yesterday. I have an eleven year old. I am trying to be strong for her. I want to live. You are an inspiration. Please give me any suggestions you can.
    Michele

    Michele, I don't think
    Michele, I don't think Neenie will reply. Her post is about 6 years old. But, maybe she will and that would be great! You might Private Message her and see if that works.

    HUGS
  • ladybug22
    ladybug22 Member Posts: 646
    #10
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    i b c
    I was dx. with I B C in Aug 07 . I had chemo and masectomy and 33 rads i am clean now it will be 2 years in Jan 1 i was on herceptin until Feb of this year, You hang in there hugs to you
  • Fran1947
    Fran1947 Member Posts: 72
    #11
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    IBC
    Hi Julianne - first off I apologize if this appears twice. I posted it a couple of hours ago & it disappeared.

    Everyone is different & everyone's story is different - I offer you mine just to throw in the mix. Your oncologist & surgeon will tell you what their suggestions are for you.

    I was treated for Breast Cancer in 2002 by surgery, chemo & rads. I went off Arimidex at the end of 2007. In Feb 2008 I woke up with my breast hard, swollen & hot. The doctor said it was an infection & it got better quickly with antibiotics. It happened again in May and this time the oncologist & the surgeon got a little exited and worried that it might be IBC. They did a skin biopsy & an MRI and everything was normal. Again it responded well to antibiotics. Then it happened again in Sept, but this time the oral antibiotics didn't work so they put me in the hospital for IV antibiotics. They did 2 more skin biopsies and another MRI. The skin biopsies were still negative for IBC, but the MRI showed a tiny lesion near the site of my original cancer. I had a needle core biopsy which showed invasive ductal carcinoma - not what I wanted to hear, but much less aggresive than IBC. I have now been treated for the new cancer and the good news is that I am considered cancer-free once again.

    They never did figure out what was causing the infections. They said it might just have been a little blockage caused by the scar tissue and rad damage. But those infections saved my life by making them find my new cancer when it was very small and very treatable.

    Please let us know when you know more. We care.

    Hugs,

    Fran
  • elizarose
    elizarose Member Posts: 124
    #12
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    tabsmom said:

    inflammatory breast cancer
    Hi Neenie.
    After about a year of getting sent away from doctors and OBGYNs I was diagnosed on October 1, 2009 with inflammatory brest cancer. I have had two chemo treatments and have my third one tomorrow. They plan on twelve weeks of chemo, a mast surgery then sic weeks of radiation. My hair started falling out yesterday. I have an eleven year old. I am trying to be strong for her. I want to live. You are an inspiration. Please give me any suggestions you can.
    Michele

    IBC
    Michele,
    I was diagnosed with IBC Dec 19, 09. I had 5 months of chemo, surgery and today finished 6 weeks of radiation. I am considered in remission.
    It has been a hard year, but God has seen me through it. If have any questions, feel free to ask me.
    Praying for you.
    Beth

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