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Posted 6/5/2006 11:57 PM (GMT 0)

mad  I am a 44 year old woman that was diagnosed with inflamatory breast cancer.  I had 4 treatments and a mastectomy.  I have searched many web sites.......I haven't found any that said that I will make it after 3 years.....Is their anyone out there who has?

Posted 6/6/2006 1:28 AM (GMT 0)

Hey don't let  "them" tell you how long you have.... You keep doing what you're doing and keep the faith.  Don't ever give up....

Love Colleen

Posted 6/6/2006 1:38 AM (GMT 0)
Hi Wags! Welcome! Our Joyce will chime in, I think she is around 5 or 6 or 7 years out from IBC....Remember, "they" are just statistics. They try to predict what will or won't happen, but try is the key word. Statistically, I should have never gotten breast cancer at age 30 (7 year diagnosis is a couple months away!)....I was in the minority on that one! But even if stats tell you thre is a 20% chance....SOMEONE has to be in that 20%, why not you? JoAnn is another one with a great story that crushed the statistics....
Yes, IBC Is serious...but it does not have to be a death sentence. Hang in there! Someone has to be in the good side of the stats and there is no reason to think you won't be the one!
Welcome to our corner of the internet!

Lori
Posted 6/6/2006 12:39 PM (GMT 0)
Hi Wags, Sorry we need to welcome you, but Lori is right. I am Joyce, and I was originally diag. on Nov. 12, 1998. I had no idea what IBC was and I must admit I was so overwhelmed with info I only remember asking one thing.... Did I have any chance? He gave me an honest answer and I said all I needed was to be told I had a chance. I remember the conversation so well. He also told me about a nun that had the exact same dia. that was doing well. I was at the hospital yesterday to see a lymp. therapist and she was telling me about a 95 year old woman that had the radical IBC treatment of years ago. She woke up yesterday with lymph issues, many years after her cancer treatment. She also knew several people that had been diag. with IBC that were doing well. There are several of the ladies that have it that I keep contact with. While treatments have changed and I find my self out of date on a lot, the fact that I am here to tell people that it can be done sometimes is a huge help in and of itself. The ladies here are a great bunch and we will help in any way we can. A great corner of the world to find someone who has been there and wants to help. Again, wish you did not have to be here but I hope I have been able to make you realize you can do this. Hugs Joyce
Posted 6/6/2006 3:20 PM (GMT 0)
I think there is a site devoted to IBC, called IBC.org or something...you may try to check it out and more feedback from those who are in your shoes...

Good luck!
Lori
Posted 6/6/2006 4:19 PM (GMT 0)

I'm only a (very occasional) lurker, who was helped years ago by many of these lovely woman on another site.....but just wanted to tell you that during my own breast problem times, I talked to a woman called Laney here in the UK who is years out of her original diagnosis with IBC and doing great.  No recurrence to date.  I will try and find you a link to her UK website - her story is on it.  I know things were rough for her during treatment, and she was really really scared - but she is here to tell the tale, and is campaigning for awareness with our government.  Just thought an extra survivor story might be good right now...

Wishing you all the luck, stamina, and strength in the world with your journey,

Claire xxx

ps Hi Joyce, hi MK!

Posted 6/6/2006 4:25 PM (GMT 0)

I tried to paste a link to Laney's website, but couldn't get it to work!  You can access it by clickin on Laney's story on the ibcsupport site (link below - and this one does work, hopefully).  She hasn't updated it for a while (too busy!), but as far as I know she's six years out and very well.

The website I know of for IBC is www.ibcsupport.org  and it does have many survivor stories on it.

That said, I know from experience that websites can be supportive AND scary, so I hope these are helpful and don't add to your worries...its always a risk, with the internet.

Wishing you well, xxxC


Post Edited (Clairem_uk) : 6/6/2006 10:30:29 AM (GMT-6)

Posted 6/6/2006 5:43 PM (GMT 0)
Here's a good scource of information on IBC. Like the others have said, you can't always believe the statistics. New treatments and advances are coming along all the time. Good luck to you. Lauri

http://www.imaginis.com/breasthealth/inflammatory.asp

Posted 6/6/2006 8:15 PM (GMT 0)

Hi Wags! Welcome. Sorry that  you have to be here but I can tell you that this is a wonderful group of women that will not only give you lots of support and love but also be honest!

I was diagnosed in 2001 w/ IBC along w/ a couple of other types of tumors. I also had a mastectomy followed by 4 A/C, 12 weekly taxol and 36 radiation treatments. I will never forget the first Relay For Life that I went to after I had completed all of my treatments. My surgeon came up behind me and gave me a hug. She thanked me for being there and for having the determination to beat the bc. Later she told me that the odds were agst me. (I had almost waited to long) I was rediagnosed in October, 2004 and went thru 2 yrs of weekly treatments. It wasn't easy mentally or physically. But I was determined that I wasn't going to let the cancer win.  In February I was told that the cancer was totally gone.

You have to remember that bc is a managable disease now. It is NOT a death sentence. There are lots of women that are survivors and it is wonderful to read their stories. Nothing is easy about having bc. We all argee that it "sucks"! (hope I don't get in trouble for using that word) There is a group called "Y-Me". They have a 24 hr hotline. They will put you in touch w/ someone that has had the same diagnosis that you have and survived that you can talk w/ personally. I know that the gal I spoke w/ helped me.

Remember to laugh lots and keep the faith. Both are important steps in your healing. Feel free to come here to yell, scream, cry or just "hang out" and ask questions. We will help you in anyway that we can.

BTW..where are you from? Maybe we have a member that lives close to you.

Hugs...Deb from Missouri

Posted 6/6/2006 9:58 PM (GMT 0)
  Thanks Debb.

still not sure how to use this forum........I hope you get my reply.........

I was missed diagnozed. I knew there was something wrong,  I felt a lump. My breat was getting redder by the day, and very hard. It was also changing in texture The nipple became inverted.  I am a large breasted woman as it is, the breast became twice the size, and the (male) doctor did not want to give me a mamogram, because my year wasn't quite up to get another. He gave me a antibiotic, treated me for an infection........so I went to a surgeon, and she move my momogrm date up and made it a diagnostic...she was scared for me when the results came back, then I had a biopsy.......wala ....guess what.....I was right....and yes it sucks!!!!

I had already gone on the web and diagnosed my sef!!

I had my mastoctomy May 8th.........I am a very strong person......and then bed time .........I hate nights!!!!!!!!!

I was suposed to start chemo again on the 2end, it was cancelled, because I wasn't healed enough........which scares the heck out of me, but I have very good doctors. they keep trying ro reasure me that I am responding well.

How ever you know, as well as I do, when you are diagnosed with the most deadliest form of breat cancer ...it kind of hard to be brave all the time.

Thank you so very much for your response, knowing that you are a 5 year survivor, gives me a lot of hope......Your response is the first one I have read.....

thank you again

Wags

Ps....I am From Wisconsin

Posted 6/6/2006 10:08 PM (GMT 0)

oh my gosh ladies..........Thank you so much for all your responses!!!!! This means a lot to me

Wags

Posted 6/6/2006 10:13 PM (GMT 0)

Wags, you are doing just fine w/ your responses. WTG! Yes, the nights are the worst. That is the time that it is quiet and we have too much time to think. I use to be up most of the night on the computer in a chatroom that I found. Nothing to do w/ bc but lots of peeps in the room all night!

I am glad that you didn't take your drs word and wait until the "proper time" for your mammogram. We have heard so many horror stories about drs not believing that there was something wrong and being misdiagnosed. You are NOT alone. We have to be proactive in our own care. The one thing that I learned is that drs are NOT God's and that I had/have a right to be heard. Plus if I don't think that I am getting the right care, I can change drs/oncologists, etc.

Don't worry about not starting your treatment on time. My original treatment had to be delayed over a week because I wasn't totally healed either. You may find out, during the course of your treatment, that you will need to have it stopped for a week or so because of low blood counts or neuropathy or any other number of reasons. If you have complete faith in your oncologist, then trust that he/she knows best. If you have questions, call. Talk to the nurse. They usually know more than the drs anyway. lol

Please, please remember that you can beat this. It is NOT, and I repeat...NOT...a death sentence. There are new drugs that are being used almost every day. Clinical trials are being conducted as I type this to help find a cure. Also, you don't have to be brave all of the time. You have a right to cry and scream and throw things. Be sure and talk to your onco. There are meds that can help w/ the depression. Don't be afraid to ask for them. Also, don't be afraid to let your family and close friends know how you feel. Let them know what they can do to help....bring in some meals, do some laundry, take you out of the house for a shopping trip or lunch. Remember that most people don't know what to do to help. You have to let them know.

Hugs...Deb 

Posted 6/7/2006 1:20 AM (GMT 0)
Wags- ME ME ME!! (well sort of) I was dx in Feb 2001, and mine had 'characteristics of IBC' ... my surgeon thinks it was, my onc thinks it wasn't. BUT my aunt (the *only* other person to have had breast ca in my family, she is my mothers sister) was dx in 1998 with IBC and had a mast. and at the time had 11 nodes positive. She is still here today, celebrating time with her 4 new grandchildren (all under age 4!) and loving life. She is my inspiration, and helped me thru my own dx and treatment. I am a 5 1/2 yr survivor, and I had Stage IIB 4.5 cm tumor and 5 of 49 nodes positive. So HANG IN THERE, there are lots of survivors out there.... don't let them tell you otherwise! hugs - stefanie
Posted 6/9/2006 8:52 PM (GMT 0)
You'll think I'm nuts to even post a response when I haven't been diagnosed yet.

I've been scared to death for over two weeks now since my doctor referred me to a surgeon for evaluation - who says the health care system moves fast???

I've been online and done a lot of research and all the statistics have really added to my anxiety.

The only fact for sure where I am concerned is that something is VERY wrong. Based on symptoms and research, I believe its IBC.

I want to thank those who posted in this forum - reading your responses gives me great hope!

gayle

Posted 6/10/2006 12:19 AM (GMT 0)

Hello Gayle! Welcome to our little corner. No, I don't think you are nuts for posting w/out being diagnosed. We have many women that do just that. We are here to give you support as long as you need it.

It is very easy, when we are frightened, to read too much into our symptoms. Take a deep breath...sit back and try to relax. Hopefully it will be nothing. One thing that I did learn, after my first diagnosis, was that I had to be very careful which websites that I chose to read information from. Remember, anyone can make a website and post whatever they want. Sound like an expert, even if they aren't.

Why not tell us a little something about yourself? I hope that you will continue to come here and post and let all of us give you support. I know that 2 weeks seems forever. Try and stay busy. Laugh lots.

Hugs...Deb

Posted 6/14/2006 10:08 PM (GMT 0)
I sat with a woman in my onc's office who had been diagnosed with IBC...13 years prior. Statistics are statistics...and we all do our best to defy them!

Love and hugs...
BEV
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