Inflammatory breast cancer

Diseases & Conditions Breast Cancer
1
  Hi,
  My name is Karla. Joyce sent me to this site a few weeks ago, because I need some help.
  A month ago I was diagnosed with inflammatory breast cancer very advanced. because I have also a big lump in my breast. It is already stage III with node involvement, grade 3, her2 positive and er negative. I am terrified. I would like to talk to people with the same kind of cancer to know their experience with this desease.
Today I had my 2 chemo, and so far I am doing ok, just a bit tired.                                                                I've been resaeching the internet, and I read about a lot of complementary therapy. Does anybody here do that? I am willing to try everything. Please help me. Thanks.
Karla.
2

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

 

3
Hi Karla,
 
I'm only a 'lurker' here who visits occasionally....(I have one or two old pals from another board who post here and gave me the link)...but I saw your post and wanted to give you a link.
 
I had a BC scare a few years ago (turned out to be benign) and without boring you with the details, at one point in my search for information I made contact with a lovely woman called Laney here in the UK who has had IBC.  She has her own website, and her story is on it - plus her contact details, if you want to email her.  Different country, but same BC....so in case it is of any help to you, here is the link:
 
http://www.aboutibc.co.uk/
 
She has been well for some time now, and doesn't update her story very often because she's so busy living her life - but trust me, she was as terrified as you are when she first started her journey!
 
Hugs to you from across the pond,
 
Claire xx ps hi MK, hi Joyce, hugs to you too!!
 
 
4
Hi Karla, you have talked to one of our best reps of IBC in Joyce. She is very knowledgeable and is happy to share. If you haven't already please check out the roll call and find out more about us. Tell us what state you live in? How old are you?

How did you meet Joyce? She is in FL right now, but should be coming back to us soon. I hope. I miss seeing her posts.

Have a great weekend. Come as often as you can and get to know us and we will get to know you.

Hugs MK

PS Hi Claire, thanks for the help, hope all is well across the pond.


5
Karla,
I'm sorry you have to join us, but glad you found us. I can imagine your fear right now, as we have all been there. I didn't have IBC, but I did weekly massage all throughout my treatment and beyond. I really found it therapeutic -- physically & emotionally. My insurance even covered it, because it was through a chiropracter. Check with your doc first, but as long as he says it's ok, I highly recommend it. I really think it helped me keep my energy level up during chemo.

Best of luck,
Julie

Do not go gentle into that goodnight,
Rage, rage against the dying of the light.
~Dylan Thomas

6

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

 

 

 

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004

7

I forgot to mention one of the BEST sites for keeping up with the latest cancer news and conferences..

www.breastcancer.org !  This is one fabulous site... I don't give out money easily but I have donated to them. I think their site is top-notch.  Hope you find it useful.

hugs, Stefanie

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004

8
HI Karla, you've gotten really good advice and web sites from the "experts." I just want to echo the news about Herceptin. Story in our daily newspaper about who effective it is in treating HER-2 positive cancers. Good luck and keep posting. We are here for you. So glad Joyce sent you to us. She is a good person to have in your corner. Hugs, Lauri

"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.

9

HI, Deb, Claire, MK, Julie, Stephanie and Lauri,

I am so glad a found this site. Thank you so much for all your support and encouraging words. You girls made me feel better.

I am 43 y.o., married, two sons 10 & 3 1/2, from California, LA.

I haven't met Joyce yet. She sent me a message to go to this site, because she was on her way to Florida, and she would not be able to help me the way she wanted to.

I will check it out all the sites  you sent me , and I will keep in touch.

Once again, thank you.

Hugs, love you all.

karla.

10
Hi, Hope you got my e mail. I was so happy to see all the help you received while I was gone. As you can see this great bunch has hearts of gold. I knew you would get the support and help and sites to help you. I just feel awful that I was not here. Please let us know how things are going.  Love and hugs Joyce

How wonderful it would be to see Angels where there are only clouds. How sad it would be to see clouds where there are Angels.
 
 

11
Oh Gosh Joyce it is a sight for sore eyes to see your name back up here again. We have missed you. Lori has done a good job piloting the PCE, tho. Hope all is well on the homefront. We have quite a few new ladies for you to meet, too. Rest up from your time away and we'll talk soon. Hugs MK


12
Joyce- welcome back! and more hugs for ((((karla))))).... we are all here for you! (and all the other newbies too).
Stef

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004

13
Stef....about that comment of evil cancers responding better to chemo than slow growing ones....it has to do with the rate of cell division. A more aggressive cancer might be growing and dividing more rapidly, so chemo has more opportunity to attack it. Or something like that....

Anyway, Karla, just adding my welcome and cyber hugs!
Lori

14
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
15
Toni, As I understand it, IBC is very difficult to diagnose and sometimes takes an expert or specialist. Do you have any breast clinics near you? Where do you live? Perhaps one of us can help you find a doctor who can help. Even without insurance, sometimes the best doctors will take on a patient with special needs, ie possible IBC symptoms, for free. If you live near one of us, we could even call our own doctor's offices and see if we can get you some help. Hugs Mary K.


16

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

 

17
Thank You Mary K and DebbiR

I am in Lafayette, Louisiana. We have several Hospitals here. I just don't know where to begin or what questions to ask. My husband said that becuase my blood work did not show and signs of cancer cells that I should not worry. But there are too many things to consider. Judging from other situations I have been in over the past 6 years when it comes to me an my body when things go wrong I, in the past did not have "normal" symptoms. I appreciate your words of advice. I apreciate the both of you and the willingness you have offered in helping me find a solution to what may be occurring as we speak in my life.

God Blesses us in many ways when we least expect it. I fully appreciate the help the both of you have offered.

Thank You
Toni C
18
Toni- I am so sorry that you are so scared.... but you need to see a Dr. as soon as possible. Just to know, to be on the safe side if it is nothing or to know for sure if it is cancer. There is an inflammatory support board http://www.ibcsupprt.org that you may want to visit, they may have more pictures for you to see, but only a Dr. can help you with a diagnosis. They can do a skin biopsy (it really doesn't hurt) to see if there are any cancer cells in the skin, and of course they can biopsy the lump(s). Chances are high that it is benign, so you just have to take the steps to get to the Dr. and see what's what.

good luck, and let us know how it goes.....we are all here for you either way!
Stefanie

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004

19
Thank You Stephanie
I am scared mostly about not knowing what is wrong more so than finding out what is wrong. I thank all of you in this group for your kind words, advice and support.

Thank U

Toni