Just diagnosed today

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Ziggie
Ziggie Member Posts: 5
edited August 2018 in IBC (Inflammatory Breast Cancer)

I was just told by my doctor I have inflammatory breast cancer. I think I am in total shock, I think. Feel like I am in a fog or a different reality than those around me. Don't know any details yet but it is invasive ductal cancer. See the doctor tomorrow but don't know what questions to ask. Totally new to cancer. Any suggestions?

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2018
    Ziggie, I am sorry that you have joined us here. I would suggest that you check out the IBC threads as the treatment might be a little different from IDC. Take someone with you to the dr. and take notes. The shock you feel can inhibit your ability to take in information. Once you have a plan the shock will wear off and you can start your battle against this insidious enemy. Take care and keep us posted.
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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2018

    https://community.breastcancer.org/forum/81/topics/842683

    I just realized that I didn’t really answer your question. You might post on this thread and other women diagnosed with IBC maybe able to suggest questions to ask your dr. tomorrow.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited July 2018

    Ziggie, I'm so sorry. I walked through that same fog in 2011 and I don't remember much about driving myself home from the doctor's office.

    There's so much to take in and learn for you right now. Like drinking from a fire hose. Be patient with yourself.

    For tomorrow's appointment, as Peregrinelady said,take someone with you, if possible, and take a pad to take notes.

    Start now to collect copies of all your pathology reports, lab reports, imaging reports (x-rays, CT scans, PET scans), surgery and procedure reports, "notes from doctor visits," and "questions to remember to ask." Buy a big binder in a pretty color and add dividers, with headings for all the stuff I mentioned. Put all the paperwork in the binder and take it with you to every doctor's appointment. You'll do a lot less waiting for doctors to call each other to get results faxed to them, and you will act as your own central information point.

    Come back to us tomorrow and let us know how you're doing. I was diagnosed with IDC with inflammatory features (cancer in my lymph nodes and in the skin of my breast) in 2011, and my sister was diagnosed with full-on IBC in 2012. We are both doing well. Hold on to hope. You can do this, one day at a time.

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  • katheperez
    katheperez Member Posts: 6
    edited July 2018

    Ziggie,

    I feel you girl. I noticed a purple spot on my left breast 6 weeks ago. Then two weeks ago, another purple spot appeared. It took me about a week to even think about Googling these observations. I saw my PCP yesterday and she agreed that ruling out IBC is the first order of business. I see an oncologist on Tuesday and also have a consult with a surgeon for a biopsy next week.

    I'm scared.

    Kathe

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  • katheperez
    katheperez Member Posts: 6
    edited July 2018

    sbelizabeth, You wisdom and experience are helpful.

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  • LoriCA
    LoriCA Member Posts: 923
    edited August 2018

    Ziggie I'm so sorry you are joining us here. The next few weeks will be a whirlwind as they typically start chemo immediately with IBC. Because IBC is so aggressive, your doctor may want additional scans (bone, PET/CT) to determine staging before finalizing your treatment plan.

    I strongly agree with taking someone with you to your next appointment. Try to write down any questions in advance, and have the other person write down important info during your consult. I would've been lost if my S-I-L wasn't with me taking notes at my first few appointments because I was in such a fog.

    Lots of great people here to hold your hand and answer any questions, please don't hesitate to reach out, post, whatever you need.

    Lori

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  • amarantha
    amarantha Member Posts: 457
    edited August 2018

    HI Ziggie, well I am so sorry for your terrible news, and certainly it is a big shock at first. But of course we are all happy to have a new friend on these boards, so welcome. I agree with keeping a good binder of all exams, organised eventually by date and type of exam. I even made an excel list with a short resumé of the results of each one for easy reference. Unfortunately I spilled water on it all and lots a bunch of (useless) mammograms... In one way you are lucky to actually be diagnosed. It is better to have it quickly diagnosed and get the right tools to treat it immediately.


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