Inflammatory breasr cancer

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in IBC (Inflammatory Breast Cancer)

I had breast cancer 2 years ago and had a lumpectomy, chemo and radiotherapy. For a few months now i have had a red rash patch on the same breast and was told by docs that it was a bad reaction to the radiotherapy. Inflammation of my breast has gotten worse so now I'm awaiting the result of a biopsy. I'm terrified as i know this cancer can spread very quickly. Is there anyone out there that has survive ibc?

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2006
    Try no to panic. Until you have the results from the biopsy the cancer is gone! IBC can start out as a small pimple like rash and spread out. It's a good thing that you didn't wait and just had it tested. Most likely it's nothing. Please let us know what the results are.

    Hugs and Prayers,
    Lexi
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  • Sunshine430
    Sunshine430 Member Posts: 27
    edited September 2006

    I know it's easy to panic and the waiting for results are crazy, but to answer your question, mu SIL's mother survived IBC for 19 years. (She died recently of something else). So it is agressive, but it's not a death sentence either. I'm going to be a five year survivor in October.

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  • slayne48-2006Sep08
    slayne48-2006Sep08 Member Posts: 3
    edited September 2006

    Thanks sunshine,I needed to hear that people do survive for long periods with this disease, i was diagoised in Nov.05, have been really scared and depressed,I just had my second round of scans last week,I will be seeing my Oncologist Mon.11th.for the results, i finished chemo about 4 months ago(tac)did really well..last scans i had were good,even though i had mets to liver and lungs,I just hope i have good results this time.(been coughing up something that looks like blood for about a month(pinkish color)I also have a chronic cough i have had for 15 years(not cancer related)

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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited September 2006

    thanks for your reply. I have had this rash and burning since about may and the doctors were putting it down to a bad reaction to radiotherapy even although it was over a year ago since i finished my treatment. I'm now getting the same pain on my breast bone which I'm worried sick about.

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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited September 2006
    Thanks for the encouraging message. Feel i need someone to chat to about this as I feel isolated and scared. Feel free to email me at Scotslass17357@aol.com
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  • sabrediva
    sabrediva Member Posts: 7
    edited September 2006
    Hey there! I was diagnosed with IBC last Sept. I was stage IIIc, with mets to the supraclav, internal mammary and axillary nodes. After 10 months of chemo, surgery, and radiation, I am thrilled to say I am NED!!! I was given no evidence of disease clearance three days ago. If I can do it, anyone can! Sending you enourmous pink cyber hugs that it is not IBC for you, but if it is, know you will get through it!
    Love,
    Michele
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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited September 2006
    Hi Michele, thanks for your message. Its encouraging to hear from someone whos been through ibc. I think my biggest fear is that I've had breast cancer 2 years ago and scared in case its spread to other parts of my body. I feel all sorts of emotions at the moment....fear, anger, resentment etc.glad to hear all is well with you.
    Love,
    Irene
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2006

    all went well at the Oncologist office, scans were good, next scans in Jan.07, also getting port out Friday.

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  • slayne48-2006Sep08
    slayne48-2006Sep08 Member Posts: 3
    edited September 2006

    not anonymous, i'm slayne48, just posted about my Oncologist visit today.

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  • sparky391
    sparky391 Member Posts: 1
    edited September 2006

    I have IBC to, I would wait until you hear from your dr. don't jump to any conclusions until you know what is going on? I know that it is easer said than done. Stay positve and my prayers are with you, with whatever the out come is! please keep us posted on what he out come is.

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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited September 2006

    Hi, got results of biopsy today. I have IBC. Going for scans on fri. just found a lump on my neck tonight. has anyone else had this?

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  • slayne48-2006Sep08
    slayne48-2006Sep08 Member Posts: 3
    edited September 2006

    well i was wrong about getting port out Fri, have to talk to surgeon first and then set a time and date, oh well, at least i'm getting the thing out.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2006
    Scotslass,

    I am so very sorry that you received the IBC diagnosis. My goodness, haven't we been through enough finishing our txs. Does your medical team have a plan of action yet? You will get through it. I am just sorry that you have to go through it again.

    Re: the lump, you'd better have the doc check for you. The lymph node could be swollen due to infection or the cancer. I wish I was there to give you a hug. Please let us know what your next step will be.


    Hugs and Prayers,
    Lexi
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2006
    I am now 13 months post diagnosis and thankfully my last scan in July was clear! No matter what type of BC you have you just need to be aware but not over reacting to any of it.

    Tina in Austin, tx IBC survivor dx 8-05
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2006
    Hi to all. My name is Renee and I'm scared to death.
    It is reassuring, however, to hear all the success stories on here.
    I guess I'm here because of my fear of a cancer dx and the pain, swelling, itching, and "heat" around the nipple on my left breast.
    I've never been one to run to the dr for every little thing (always considered myself to be pretty tough), but this has me really concerned now.
    To give you a little background, I'm a dog groomer and I'm always getting dog hair all over me. The itching started about 3 or 4 months ago, but I just brushed it off (bad pun, lol) as dog hair sticking to me. It was getting very worrisome though. About 3 weeks ago, my nipple started to become swollen, painful, VERY itchy, and hot. It lasted for a couple of days, so I figured I just had a hair in "there". The density of the nipple didn't return to normal however (it felt more dense). Well, 2 days ago, the inflammation returned worse than before. It's mostly confined to the aureola and nipple, but there is some pain and discomfort further up the breast. It does appear that there is some reddening and a skin "texture" change (pimple-y) and denser also.
    Being the research goon that I am, I did some searching on the internet and found out about IBC. I had never heard of it before and always thought that BC didn't come with pain, but MAN, were my eyes opened. Now I'm even more concerned of what may be in store for me and my family.
    I need to go see a dr, but don't have a family physician or an OB/GYN. I also don't have any health insurance.
    Fortunately, I do live near (30 minutes) Duke University Medical Center and UNC Chapel Hill, but don't trust any of the dr's in my immediate area (past experiences, ugh).

    Who would I make an appointment with? What should I do?

    Thanks all in advance.

    Renee'
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  • PattyMN
    PattyMN Member Posts: 40
    edited September 2006

    Renee: I hope this turns out to be a passing infection...Turn your research goon skills to getting in contact with either Duke or UNC Chapel Hill. You need an examination and tests to rule out breast cancer. Call first thing on Monday and let us know when you're being seen! PattyMN

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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2006

    Renee - I second Patty's rec ... find the Breast Ctr at Duke, explain your symptoms & ins situation. Every med ctr like Duke I believe has programs for those not insured. If they don't have anything on campus directly, they will direct you to the nearest place. Run with the wind and find out what's up!! Don't put this off and don't accept vague answers until you know for sure and you're confident your MD does AS WELL!! We're here to assist in any way. Good luck. Squeaker.

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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited September 2006
    I get my results tomorrow from my scans and I'm terrified. Will let you all know how I get on

    Irene
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2006

    Ihave been diagnosed with ibc no mts but after some dose of chemo it returns on top of my breast as tumor I am following treatment will undergo surgery and hope everything will be okay

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  • txred9876
    txred9876 Member Posts: 392
    edited September 2006
    Irene,

    It will be OK. I had many things going on. I not only had IBC but two tumors (one of which they never found until my mastectomy) plus DCIS high grade. I opted for a double mastecotmy instead of one as I saw many IBC woman have better results with this option. As chemo went on I watched the redness/selling disappear. As well as the pain. Keep positive it makes all the difference in the world!
    Tina
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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2006
    Scottlass,

    Thinking of you and hoping that all went well with your scans. Please let us know how you are doing.

    HUgs,
    Lexi
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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2006

    Renee - It's such a hard time right now - finding out this news, starting treatmnt and just readjusting to a new perspective. Stay well, have hope, this is doable! We're that much further down the road from you and we know there's always support here. Take care of yourself and those you love.

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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited September 2006
    Hi everyone, Got the results of my scans today and they were good.No evidence of cancer in bone scan or body scan. Started my chemo today. Thanks for all your support. will keep you posted.
    Irene
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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2006
    Irene,

    That is great news!! I hope that your chemo went ok. You are going to kick this cancer to the curb!!

    Hugs,
    Lexi
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2006

    I have been to the local clinic for initial exam and the doc has given me antibiotics for an infection. The pain is greatly reduced, but the redness seems to be getting worse. He want's to see me again tomorrow and we will go from there. He stated that if it seems that the "infection" is not getting any better than a referral to Duke seems to be in order for futher testing, scans, biopsy, etc....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2006
    scotslass: Just wanted to make a note and tell you good luck with your chemo.

    Nicki
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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited October 2006
    Lexi, I'm due to get my 4th chemo tomorrow. I've kept pretty well until this week. I feel very tired and my hair has started falling out. How are you keeping?

    Irene
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  • lexi4
    lexi4 Member Posts: 1,074
    edited October 2006
    Hi Irene! I am happy to see your post. I have been thinking about you. I am glad that you are holding up well during your tx. I am sure with the cummulative effect you will get more pooped out. How many more txs will you have? The chemo is surely kicking the heck out of the cancer and hopefully you will not need to do anymore chemo!

    Stay strong Irene. You will get through this!

    Hugs and Prayers,
    Lexi
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  • Scotslass17357
    Scotslass17357 Member Posts: 8
    edited October 2006
    Hi Lexi, My onc isn't sure how much chemo I'll need before surgery it depends on how much the tumour shrinks. He said there is a lot of cancer in my breast. I'm just trying to take a week at a time just now.

    Thanks for your words of encouragement
    Irene
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  • maryannw
    maryannw Member Posts: 1
    edited October 2006
    I am a 7 year survivor of inflammatory breast cancer(IBC). I was diagnosed at Stage IIIB. It is very important that you follow through and get that biopsy. There is a website devoted to ibc only: www.ibcsupport.org If you are interested, please check it out. Do you have any other symptoms of ibc?

    Take care,

    Mary Ann
    Chemo Hats: www.cjhats.com
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