Inflammatory breast cancer

Hi Karla! Welcome. I am sorry that you have bc but you have found a great group of women here. I'm glad that Joyce sent you. I was diagnosed with bc, Stage III, 2001. I had 19 of 21 lymph nodes involved. 3 different tumors. I had A/C followed by 12 weeks of Taxol. I was in a clinical study of the A/C w/ and w/out Herceptin. It has been proven now that women that take the Herceptin either with the A/C or right after they finish the A/c have a 80% chance of recurrance. I was in the group that didn't get the herceptin. You might want to talk with your onco about this. I didn't do alternative therapy. I did attempt to eat good, healthy foods and listen to my body and rest when it told me to. (there were many times that I didn't do well with either of the above) lol

Hang in there. Remember, sometimes you can overload yourself with research and info. A dear friend told me to always remember to find sites that were well known because anyone can post and make you think they are expert. There are lots of gals here that will be able to give you info. We are here to help you.

Hugs...Deb

Hello Karla-

I was dx in Feb 2001, and my cancer was very similar to yours... Stage IIB (4.5 cm tumor) 5 of 49 lymph nodes involved, grade 3, her2neu 3+++ , er-/pr-.  They thought mine may have been inflammatory bc (my aunt was dx in 1998 with same bc) but they weren't sure because I didn't have the skin involvement.  I have surgery first (bilateral mastect.) and then 3 rounds of A/C, 3 rounds of FEC, 4 rounds of taxotere, and 1 year of Herceptin.  It took almost a year to complete my treatment.  But happy to say, so far I am cancer-free, and my aunt just celebrated 6 years!  Please know that there is hope, even for the extra-bad-a** inflammatory bc.  There is a great website called www.ibcsupport.org for those with inflammatory bc.  There is much to be hopeful about, especially with Herceptin... did you see the recent article on it?  let me find the link....

http://abcnews.go.com/Health/wireStory?id=703479

This is very promising news for those of us who are er- and can't take tamoxifen!

Please know that you can find lots of support here and on the ibcsupport.org site;  the dx of inflammatory is NOT a death sentence, it just means you need some extra chemo.... I had a friend tell me once that she was told that high-grade cancers can respond BETTER to chemo that slow-growing, resistant ones.  I don't know if that's true, but I like to think it is.

Hang in there Karla.... ((((HUG)))) all is definitely not lost.  Keep your chin up and fight!

Hugs, Stefanie

Hello, My name is Tonya. I am 35 years old and have great concerns that I may possibly have the symptoms of IBC. I have break outs much like Heat Rash or Shingles. My skin under my breast is dry itchy red, slightly orange.  I also have a lymphatic situation. As well as unexplainable pain under my arms stretching across my breast/chest. All these symptoms come and go except for the 2 lumps I have found under my right arm. I do not have insurance or finances for private doctors, but am at the mercy of God and State run UMC. I need strong suport and advice on what to do, symptoms. I expressed my concerns at a recent OBGYN check up but I don't think I was heard. The practioner stated she felt no lumps, and that there is usually no pain, and that lumps are usually hard. But I have been doing internet research on IBC and have read the symptoms are not of the norm when it comes to Breast cancer and most Women find out when it has become progressive. I need help. Advice. Anything that can help me in my quest for knowledge and how to get the State Hostpital to meet my medical needs if this is the situation I am in.

I am desperate to live a full life as I have a son I want to see grow up and a husband I love very much.

Thank You To any one and everyone for any advice and words of wisdom.

Toni

Hi Toni! Mary K is so right. Please let us know where you live so we can help. There are many wonderful physicians out there whose main concern is a woman's health and not the almighty dollar. When I was diagnosed w/ bc, I was working 39 1/2 hrs a week for a company. Suppose to go full time for several month prior to my diagnosis. So, I had NO insurance. I was helping raise 2 granddaughters and didn't have any extra money. I knew the oncologist that I wanted to use. I called and explained no insurance but that I was applying for medicaid. No problem. My first chemo was at the hospital so that the pharm company could provide it at no cost to me. I interviewed a couple of surgeons and when I found the right one, I told her the insurance saga. No problem. She waived her fee and got the hospital to wait to bill until my medicaid was approved. So, don't let not having health insurance stop your search for good medical care.

Hugs...Deb