IBC Map

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lorieg
lorieg Member Posts: 802
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi ladies.  I know this forum is not very active, but I thought I would post this anyway.  An IBC sister and friend of mine has created an IBC Map to look for clusters of IBC around the country/world and also to help connect women to others in their area with IBC.  If you are interested in being on the map send me a PM.  Only your first name and city is put on the map although she does keep your contact info privately.

 Lori

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  • leisaparis
    leisaparis Member Posts: 587
    edited January 2011

    I sent you a private message. Add me.

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  • lorieg
    lorieg Member Posts: 802
    edited January 2011

    I wrote you back!

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  • Lena
    Lena Member Posts: 1,036
    edited January 2011

    Which part of the map would I even go on -- I was diagnosed in one state but later moved to another where I live now -- the original or new one?

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  • lorieg
    lorieg Member Posts: 802
    edited January 2011

    Lena, good question!  That would be a question for the map maker, not me.  If you want her e-mail send me a PM!

    Lori

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  • ItsCeToday
    ItsCeToday Member Posts: 3
    edited January 2011

    Where can we go to see the map??? I'm interested in being placed ON the map, but would also like to SEE the map!!!

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  • leisaparis
    leisaparis Member Posts: 587
    edited January 2011

    I'm sure Terry won't mind anyone seeing the map. Here's the web sight......

    http://www.smither.net/ibc/mapping/patients/    

    Just copy & paste into your browser and it will take you right there.

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  • lorieg
    lorieg Member Posts: 802
    edited January 2011

    Thanks for posting the link!

    ItsCeToday, if you want Terry's e-mail address I can PM you.

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited February 2011

    I'd also like to be included in the map as well!

    Thanks!

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  • ItsCeToday
    ItsCeToday Member Posts: 3
    edited February 2011

    Yes Please send it Lori.  I would also like to know -- I read something the other night that surprised me -- that 50% of people diagnosed as IBC are obese -- I'm curious what the stats are on the blog... anyone care to chime in?  Me, I am. and I'm working on getting my weight down....hovering around 34%.  

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  • Tundra
    Tundra Member Posts: 136
    edited February 2011

    Hi ItsCeToday, I'm quite petite. I have a little bit of belly chub for the winter now ;-) but apart from that, no. Have always been in the middle or lower end of the weight for my height.

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  • lorieg
    lorieg Member Posts: 802
    edited February 2011

    ItsCetoday and Holly, I will send you Terry's e-mail.

    Obesity is a risk factor for all breast cancer.  I am 5'7 and 120 pounds though I don't think weight was a factor for me :-)

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  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    I've talked to Terry and she said it was okay to post both her e-mail address & the map link. Here's the e-mail addy: tlarnold@sbcglobal.net

    Here's the IBC map site: http://www.smither.net/ibc/mapping/patients/  She needs info from you, but the only thing that shows up on the map is a first name & a tag number, She will e-mail you your tag # so you can find yourself.

    It would be great if we could get all IBCers listed just to really see how RARE this disease is.

    Lets get the word out. Thanks all,    Leisa

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited February 2011

    Sent you a pm.

    BTW you might let her know I am NED!

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited February 2011

    I know of one other person in Oklahoma, I talked to her on the phone.  She was getting ready for her mastectomy. 

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  • ningram40
    ningram40 Member Posts: 2
    edited February 2011

    Hello:  I have just got a couple of questions.  I have not been dx with IBC; however, I have an MD appt on Friday to discuss this as a possible cause for my right breast problems.  I do not have any outward appearances as far as dimpling or discoloration.  I do; however, have the terrible itching and pain along with the sore nipple and redness at the top of the areola.  There are also times that the breast is swollen and hot.  I see on some of the IBC sites that most woman have extreme symptoms.  Could I just possibly be in the earliest stage??  Can anyone on here tell me if they waited until they had extreme problems until the questioned the problem? 

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  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011
    ningram40...Not everyone gets all the symptoms. There are a lot of women who ONLY get a few. The ones who have had just a few symptoms, usually say that they only had some redness, itching, sore nipple. Do get it checked out now. Everyone is different. These may be the only symptoms you get. There is no early stages. IBC is an automatic stage 3 when diagnosed. Hopefully what you have will not be IBC, but if it is, the earlier you catch it the better. If you wait around to get all the symptoms, then you will more that likely end up with a stage 4 diagnoses. There are only 4 stages. IBC is very aggressive so the sooner you find out the faster you can get started on treatment if it turns out that 's what it is. Good luck. God Bless. Will be praying for b9 results for you. Keep us posted.   Leisa
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  • ningram40
    ningram40 Member Posts: 2
    edited February 2011

    Thank you all for the information.  I have an appointment tomorrow morning at 815 (2/18/11).  I was having soreness (felt like I had been punched in the side of that breast) last April and went to MD, of course, they sent me for a mammogram (40 yo, hadn't had one yet).  They said they saw nothing.  However, that wasn't normal (no lumps), they should have told me at that point that there could be other causes (not always presented with a lump) and went a little further, at the time I was not aware of IBC.  My breast then would get really sore, swell and feel red hot.  Then...it started to itch.  I could have scrathed until it bled, nothing offered relief but a hot shower.  My husband googled 'itchy breast' and found one of the IBC sites, thank goodness he did!  I have a list of symptoms and questions I am taking with me to the MD.  I will not settle for anything else except a CT or an MRI, something that will look beyond a lump....will let you know.  Prayers are much appreciated.  No matter what the outcome, God is still on His thrown!!

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