Inflammatory Breast Cancer

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pzazzz
pzazzz Member Posts: 32
edited June 2014 in IBC (Inflammatory Breast Cancer)
Inflammatory Breast Cancer
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  • pzazzz
    pzazzz Member Posts: 32
    edited June 2008

    My daughter was diagnosed with IBC in Nov.2008 and has been through the two levels of chemo and is scheduled for surgery July 2nd, next Wednesday.The density was measured at 10 cmm in her left breast in the beginning and the final Pet Scan  doesn't show cancer and it hasn't spread.  However, because it is IBC, they can't be sure there aren't cancer cells they can't see.....and it was decided she must have the surgery to make sure and to prevent re-occurence.  Has any of you with IBC NOT had surgery?  Is this what all of you have experienced?  Have  all of you had the mastectomy surgery is her main question.  She has decided to have the bilateral surgery. 

     She is single and 46 years old....just broke up 6 months ago and had decided to get into a relationship to finally get married .. Then she gets this diagnosis so she also feels so alone ....... and has a void that her very dear wonderful friends can't fill. 

    She is gone for a couple of days, so I decided to try to get as many answers as possible from you who have IBC.

    THank you VERY MUCH.  I hope I have lots of input for her to read.!

    God Bless you.

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  • DianeE
    DianeE Member Posts: 176
    edited June 2008

    pzazzz,

    So sorry that your daughter has joined the IBC family.  I know how hard my diagnosis was on my parents so hugs to you as well.  Yes, IBC does require a mastectomy.  I saw 2 surgeons and there was no option.  It is a different beast and has to be treated as aggressive as possible.  I decided on bilateral as well as it just made the most sense for me.  My treatment was TAC, double mx and then 33 radiation treatments.  It is a long road but your daughter will be o.k. .  Glad she has good friends but I can only imagine the difficulty of being single.  Encourage your daughter to visit this site when she feels up to it.  There are a lot of great women and men with a lot of support and information to offer.

    Bless you both,

    Diane

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited June 2008

    pzazz,

    I was also told the only option that I has was a complete mastectomy.  Prior to my surgery I went through 20 weeks of chemo.  After surgery I  had another 3 1/2 months of chemo followed by 7 weeks of radiation treatments.

    You may also want to look at the post Lets share our stories.

    Hugs from Michigan

    Laura

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

    Yes, I also had a mast. Followed up with radiation tx w/ a bolus used to target the surface of my skin.

     I am very sorry that your daughter must endure this. There is light at the end of the tunnel. She is blessed to have her mom by her side.

    Hugs and Prayers,

    Lexi

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  • jacqueline56551
    jacqueline56551 Member Posts: 48
    edited June 2008

    pazzazz: I had a bilateral. I choose a bilateral after my oncol said that I had to have a mastectomy. As others have said, if you have inflammatory bc you need to have a mastectomy.

    I wish your daughter all the best.

    Jacqueline

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2008

    Since IBC is so very agressive, a mastectomy is the only option.  It really is a very different type of breast cancer than IDC or ILC.  This cancer involves the skin of the breast rather than a duct or lobe.  I was told that IBC is already assumed to be in the lymphatic system by its very nature. 

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  • carmadi
    carmadi Member Posts: 10
    edited August 2008

    IBC - terrible type of cancer!!!  My BGF diagnosed in 2000 - had double mast, chemo/rad and was in remission for only 8 months before it came back - with a vengence!!!  She has been on several different kinds of chemo for the past 7 years straight.  Its spreading like crazy...does anyone know if its ok for her to not listen to her oncol and go ahead and take vitamins??  He advised her not to, but it doesnt make sense as shes not eating (lost over 40 lbs in the past 3 months) and needs strength to fight this. 

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  • RobinTN
    RobinTN Member Posts: 654
    edited June 2008

    so sorry to hear about your daughters diagnosis.

    I had a modified radical mast on the left and a simple on the right.I was diagnosed with IBC stage 4 with mets already to the nodes and liver.I was on chemo a total of 2 years.However I was cancer free for 4 months and it came back in my liver and was on chemo for that.Now I have been cancer free since may 07.The scar tissues in my liver are shrinking and that almost dosent happen with scars but I thank God every day I am alive.I will be parying for all of you on this thread.IBC is a total different beast than the other breast cancers.When I was diagnosed the survival rate was 1% but now it is up to 40-50% and growing with the new meds that have came out.I am so looking forward to the future.

    I will probably be on herceptin the rest of my life but a small price to pay.

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  • germangal
    germangal Member Posts: 97
    edited July 2008

    as with the other ladies, I am sorry your daughter has to follow us on this journey. Tell her the double MRM is indeed a crucial part of her treatment plan and she shouldn't hesitate about it! This is a big nasty green monster!  Have her get a referral to a REALLY GOOD breast surgeon who partners with breast reconstructionist to talk about options. While I chose to not do reconstruction at this time (I like "B" prosthetics for play, and "D" prosthetics for evenings! options are great!), my best friend (who also had IBC!) had TRAM flap surgery, new breasts built AFTER radiation was completed and 8 yrs later, they still look GREAT! Perky as all get out! And not a scar to be seen!

     Karen

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