IBC

Pat634
Pat634 Member Posts: 271
edited June 2014 in IBC (Inflammatory Breast Cancer)

Was told biopsy result of IBC today. No other info other than he wanted to schedule me for a PET scan tomorrow.  I asked what grade and stage and he replied "I dont know that yet". But I guess they only do PET scans on thursdays and tomorrow is booked up.

Left (affected) breast burns and so does armpit...mostly since its been smashed, bashed and as of yesterday biopsied.  Only noticed anything suspicious about a month and a half ago so scared wondering just how fast this spreads and what happens if they come and tell me I have cancer everywhere?

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited September 2008

    Patrice, 

    IBC is an aggressive cancer, but you are ahead of the curve.  The average time of symtoms to dx is three times longer than your journey.  My wife was at least 8 months from noticable symtoms to dx, with both breast fully involved.  But it was still in the breasts and lymp nodes in the chest area.  Wife gets much knowledge from here and from ibcsupport.org,   Best of luck, IBC is a high hill to climb, but many before you have made the path to the top easier for those that follow.

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  • shrink
    shrink Member Posts: 936
    edited September 2008

    There were 6 weeks between my symptoms and diagnosis.  IBC was contained in the breast tissue and lymph nodes.  I'm 16 months past diagnosis and feeling fine.  It is a scary disease but you're on top of it.  Please let us know how you're doing.

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  • Pat634
    Pat634 Member Posts: 271
    edited October 2010

    PET scan today at 3:30pm. They're fitting me in.

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

    Patrice,

    I am sorry that you are dealing with IBC, but I am happy to read that they are moving quickly with your diagnosis. IBC is very aggresive, however you will receive aggresive tx to combat the ca.

    Thinking of you and please know that you will get through this one day at a time.

    Hugs,

    Lexi

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  • ebann
    ebann Member Posts: 3,026
    edited September 2008

    Dealing with IBC can be a shock to the system. It is a rare and aggressive form of BC. As mention on this thread. PET scans are important. It is very good that your Dr. is moving fast. This form of cancer cannot be prolonged. I get my PET scan on Tues 9/16 to find out if my cancer is FREE! I am scheduled for my double mastectomy on 9/29. They will be removing the lymph nodes to see if they have been invaded. We are here to support you. I hope you feel good about your Dr. that is very important. We IBC'ers understand. You are not alone in this! Keep us posted.

    Blessings;

    Elizabeth

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  • Pat634
    Pat634 Member Posts: 271
    edited October 2010

    I will keep everyone posted and thanks for all the replies.  I'm a bit paranoid about the PET scan results....seems like theres a new boot dropping every day......would give anything to hear SOMETHING positive. In the meantime for anyone behind me in the journey maybe reading this will at least let you know what to expect. http://patrice634.wordpress.com/

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited September 2008

    I am so sorry that you got bad news, but I am so glad that you were able to get diagnosed fairly quickly.  My breast problems took more than a year to get diagnosed, and it was about 10 months after my initial breast changes that I began having horrible pain in my hip and back that turned out to be metastases.  So, I would be hopeful that your PET scan will come back clean.  IBC is fast and aggressive, and it is good that you acted fast.  Please visit us often.  I will also bookmark your blog, so I can check on you.  Good luck, and please, keep us posted, and ask any questions. 

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  • Pat634
    Pat634 Member Posts: 271
    edited October 2010

    Got a call today to schedule the first appointment with the Oncologist for Sept 18th. When I asked what the scan results said she told me she didnt have that information and that the Oncologist will go over all that with me next thursday. Sigh... If the cancer doesnt kill me the stress will.  Everything else went so fast once I changed doctors so is the week wait a good thing or a bad thing?????

    Whats the first Oncology appt like for us IBC'ers?

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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2008

    Patrice - Your first apt is hard, hands down, just hard. But it's also the first step in regaining some control over the roller coaster you've been on. If you can take someone with you for support and a second set of ears, you most likely will be glad you did. The doc should go over all your test results to date that he has access too. If he doesn't have them all - make notes to get the missing ones to him. He's the new captain of your treatment team. He's there for as long as you want, but he needs access to all current info. He'll describe the overall treatment plan, the drugs, the timing, surgery and radiation. Ask him about tials you may qualify for - important to do before you start chemo. Remember IBC is best treated by those who are experienced w/it and are current on protocols. Bring a notebook to write this all down in. You can do this ... we're here to help too!

    Squeaker

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