Please help me understand w/out all the technicalities

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becky1
becky1 Member Posts: 15

I'm new here daughter is writing for me. Early Oct. my mothers left breast was inflamed, she thought she had an infection. Within 3 weeks her breast was very swollen and painful, dark reddish orange in color, flat nipple and a large area of pitted skin. She finally went to dr. when she developed an ulcer. Which we later found out to be an 8' tumor that ulcerated through the skin and there was an infection that needed drained. She had her biopsy a week before Thanksgiving, results are invasive ductal carcinoma with no clear margains for surgery, negative for hormone therapy. So before any scans the onco. began neoadjuvant chemo. 2 kinds every 3 weeks. Finally she had a ct and bone scan which showed thumbnail size nodes and a spot on liver which is "suspicious" Insurance denied PET scan. So onco says we will treat "as if" its in whole body.He cant give a definite stage before total masectomy and node removal, he says possible 3. Had 2 chemo treatments and yet breast still seems infected, on 3rd antibiotic. Incision hasnt closed and theres still drainage which dr. says is good. He says tumor is liquifying from treatment. We cant help but wonder if this isnt really inflammatory breast cancer WITH A TUMOR or is the biopsy truely accurate. Just wish we knew "true" stage and what to expect instead of constantly wondering what is truely inside the body. Trying to be positive about this but scared, cant help but feel like being poisoned by the chemo..I know crazy right. Any advice or more understanding would be greatly appreciated, if you can maybe help figure out how to better stage this cancer, we know its not a clinical staging but if she could "feel" better prepared at what shes facing instead of saying OK to whatever dr.'s says. Thanks (and by saying without technicalities, I mean language I can understand not doctor language..)

Comments

  • azsunn
    azsunn Member Posts: 201
    edited January 2010

    I don't have any advice, but certainly you and your mom have my thoughts and prayers.

    I hope that someone else comes along that can help you more.  Maybe you should try posting in the IBC forum, maybe the would be able to answer your questions?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    becky1 ~  Right now I think the best advice would be to make sure your mom is seeing a breast specialist at a good breast center.  Hopefully you will have more answers soon.  If you can, try going to the information at the top of this web page where it says Symptoms and Diagnosis, and click on it.  When the page opens you will see on the left side different subjects you may want to investigate.

  • ateepay
    ateepay Member Posts: 40
    edited January 2010

    Becky.....Shanagirl is very correct, your mom needs a doctor who can RULE OUT IBC....as from your description, it NEEDS to be ruled out quickly.  IBC by its nature is stage 3B upon diagnosis.  If the small spot on the liver or the nodes are cancer, by National Cancer Institute guidelines, the stage would be 4.  

    There are doctors who specialize in IBC, where are you located (State)?

    Patti Bradfield, President, The Inflammatory Breast Cancer Foundation

    PS....It is possible to have 2 different types of breast cancer in the same breast at the same time.  Sorry, I know this is a tough time. 

    www.eraseibc.com 

  • ReRun
    ReRun Member Posts: 9
    edited January 2010

    Good morning

    My name is Sharon and I have just been diagnosed with invasive ductal carcinoma.  today I am going for a cat scan and this tuesday my breast doctor will let me know if it has spread to any other organs.  If it has I have to have chemo first, if not then a mastectomy.  The mass seems to be approx 3.5 centimeters.  Two yrs ago I had a biopsy of that area for calcifications.  It was benign.  The doctor had me come in every 3 months for ultrasounds and periodic mammograms until 6 months ago when I was told I could now go that long w/o the tests.  Several weeks ago I felt a fairly large lump that I hadn't felt before.  My breasts are fibrocystic and it has always been hard for me to understand what I was feeling.  This was clearly different.  The ultrasound was alarming, an mri was alarming but did indicate that the lymph nodes were normal and no focal enhancements to the chest wall.  The doctor does not see that as indicating that this thing has not spread and I am terrified that it has and that I will die.  My mom died of breast cancer and my husband of esophageal.  Please share some strength and hope with me, please.  Thank you all and God bless.  Sharon

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