INFLAMATORY Breast Cancer

Hello: I am curriently in Chemo headed(soon) for a Mastectomy.I NEED to talk to someone in the world how has INFLAMATORY BC This is so furstrating..it seems so rare that I can find someone to chat with. SInce it is so very different that just plain Breast Camcer..I seem to be getting swept under the rug -so to speak. I welcome your comments. Thank You
Gail

[CCF-RN,MSN-rf]

Dear Gail:  Your post is out there and hopefully you will get a response.  If not, and if you live in the United States, there is a program chartered by Scott Hamilton called the 4th Angel Mentoring Program.  It pairs survivors and patients with like diagnoses.  If you are interested you may call 1-800-223-2273 ext 58734.

[neatfreakmom]

Have you contacted the American Cancer Society?  They may be able to put you in touch with one of their cancer survivors who had the same type of cancer.  I don't know for sure - but it would certainly be worth the phone call.  Best of luck!

[edna-has-ibc]

Gail, my wife has ibc. She was misdiagnosed by several doctors at a hospital where she worked. They had her on antibiotics over 10 months until she nearly died. She is now disabled and doesn't have much time left. I'd be glad to give her your contact info if you will post it. There are probably others out here as well.

[ceegee]

There is a support system on line.  The website is www.ibcsupport.org (I am pretty sure it is org, but if that doesn't work try .com)  Can you say what your systems were that were misdiagnosed, and if they were always present?

[JessR]

My mother found out about two months ago that she has IBC which has spread to a spot on her liver, and spots on her shoulder and pelvis.

She is currently getting chemo weekly, which she has been doing good with, but I know how you feel about not knowing anyone else.  This type of breast cancer is so rare that it seems there's nothing out there especially for my mom because her hormone receptors were negative.

If anyone else can shed some light on us people who are looking for some more answer and help, please reply.

[Carol in Florida]

Hi Gail,

I was diagnosed with IBC in late July 2003. I have finished chemo, surgery and will finish radiation next week. Let me know if there is anything I can do to help.

If you would like to correspond via email, you can email me at:
mcwillia_c***@****

[HeatherG]

Hi Gail,
I was diagnosed in 2000.  Had chemo, MRM and rads and so far I am doing well.  I have also met some women who are 12-13 year survivors of IBC.  Not all of the woment who I have met with IBC have made it, but there are a lot of us who are doing really well.  Have you seen the mail list that is for IBC women only?  There is a lot of information out there and a really encouraging and wonderful group of ladies who are there to help each other out.  You are not alone with this diagnosis. There IS hope!  Grab onto that hope and hang on tightly!
Heather

[cow chaser]

Gail.. have you tried IP6  please look it up on the net!!!! I did!!!!!!!

[GailMcGill]

American Cancer society doesn know much either, sad , they are so very helpful with everything else. I have attended several seminars also but the topice lean toward Breast Cancer and it has been a waste of time. I am thankful to all of you who have answered..Is nt it just awful, cancer is so very wide spread an epidemic. Please anyone who needs ot chat write to me. I am so very strong and holding up so well, I almost feel guilty but I have BIG ears and a kind understening willing to help ..
Belss ALL of you

[GailMcGill]

Hello; I am here for you, Just write me anytime. I will be heading for surgery soon but things have gone so very well for me I am expecting to be up and about quickly.. If I dont answer right away,,I will!!