It's officially IBC

Diseases & Conditions Breast Cancer
1
I received my diagnosis of IBC today.
 
I have an appt with my surgeon on Friday who is referring me on to our local cancer clinic. I know that I will get more answers there.
 
But  I don't even know what questions to ask!
 
I know we expected this diagnosis but it hurts and I'm still shocked.
 
 

Gayle
 
Life is short, wear your party pants!

2
Gayle, sorry to hear of this news. Expected or not, it is frightening and shocking. We're here for you, whenever you need it. Joyce will likely chime in with great words of wisdom, as she is an IBC survivor of many years.

Surround yourself with those that care and can be supportive. Take notes of your questions and consider bringing a friend or family member plus a tape recorder to the doctor's appointment. That way you can ask questions without worrying about getting all the information and you can listen later.

Hang in there and let us help if we can.
Lori

3

Gayle: I am so sorry to hear your news. Okay, now the waiting is over for your diagnosis. Now is the time to begin to arm yourself w/ knowledge. The first thing to do is try to stay positive. Remember, this is a managable disease today. As Lori said, surround yourself w/ positive thinking people. Laugh as much as you can. Laughter is a great stress reliever as well as a healing tool. Get a notebook and write down any and every question that you think of...no matter how silly it may seem. Keep it beside your bed also. Nights are sometimes when we think of questions the most. Decide who you want to go w/ you to your appts. It is always good to have someone w/ you - not only for moral support but to write down the answers to the questions. You will hear so much info that you will only process a small amount of it yourself. A tape recorder is a great idea. If the surgeon or onco tells you no..then get up and run out of that office as fast as you can. One other thing, remember to get a 2nd opinion. It is very, very important that you have faith in your onco and medical team. Make sure that they will work w/ your surgeon and your family physician.

Come here and post. You will always find a shoulder to cry on. Arms that will give you big hugs and lots of us to listen to you yell.

Hugs...Deb


 

4
Gayle,
 
I'm sorry about your diagnosis, but at least now you know what you are dealing with.  This disease is beatable.  Just look at all of us here.  You can beat it, too.  We will be there with you step by step.  Knowledge is the best thing.  Learn as much as you can and ask questions.  Don't assume that what is being done to and/or for you is the right thing.  The most important thing, in my opinion, is  POSITIVE ATTITUDE!  It's hard sometimes, but believe me, it makes a huge difference.  But remember, we are here for you even on those days when you don't feel so positive.  We have big shoulders, so come and cry anytime you need to.
 
Best of luck and keep us posted on everything.

L & H,
Kathy

5
Gayle, I am so sorry you are having to deal with this. I was diagnosed back in 1998. I was lucky and had a doctor that was ahead of his time. He worked with a team and they started me on chemo right away. After chemo I had surgery and then I was given chemo and rads. I know sometimes its nice to know someone has already walked down the same street you are on. Just remember with everyone here you are never alone in this walk. Please let me know what your doctor says. I will be thinking of you. Best wishes, 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.
 
 

6
  It gave me a sick feeling in my stomach when I was informed of having BC.  The dx just confirmed what my woman's intuition had already let me know.  I guess knowing helped soften the blow, but it still knocks ya out of the park!
  What does the I in IBC stand for? Is it stage I?  If so I am IIIBC eyes , but so far so good!  Actually BC has helped me get medical help for bipolar II depression and that has been a real blessing. Also at age 34 I have the perkiest little 2006 model breasts... I always did want a boob job, however one does hope the "cost" is not too high. 
   Bless your heart and prayers to you and your loved ones.
                                                Karen in north Idaho
7
Karen the I stands for Inflamatory. I could actually feel the heat. It travels across changing texture and color, at least it did with me. I thought it meant the colors, and how it looks inflamed, but not everyone gets all the different shades. Someone told me it means the heat that comes from it. Never did remember to ask. I know I was surprised at how informed my brother was when he came over the first night and asked me if the doctor felt for heat. Best wishes, 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.
 
 

8
Gayle, Everyone has suggested that you learn as much about your dx as you can. That way you can ask very good questions and understand the answers. Do not be afraid to ask the doc questions, as many as you need to. A tape recorder and a supporter with you is an excellent idea as Lori and others told you. My DH went with me and we used the tape recorder that my DD gave me. The doctor was very open to letting me record the visit and he gave me as much time as I needed to ask questions. I had a long list of them after I did as much research as I could before meeting him again. Remember you are your best supporter-Knowledge is power!!!

Please stay with us and keep us updated. Blessings to you and your family,

Candy

Two are better than one, because they have a good return for their work: if one falls down, his friend can help him up.  Ecclesiastes 4:9-10
 

9
Joyce is our resident expert on IBC! I even learned something new reading her post this time. Altho over the years she has told lots about her IBC dx I don't remember hearing about the "heat" before. Just goes to show you are never too old to learn. Since I am the resident oldie, I can be proof of that. I am sorry you are having to deal with this nasty stuff, we will do all we can to help you. Hugs MK


10
Gayle,

I am so sorry that you have to be going thru this sweetie. You have found a great place to get the support that you need (24/7). There seems to ALWAYS be someone popping in here to post or help someone.

The gals posting ahead of me have given you some great advice. I am a 20 year survivor (I even had a recurrence 2 years after the initial DX). I was not DX with IBC however, but the worries were still there while going thru it.

Hang in there. It WILL get better for you and please don't hesitate to post her ANYTIME. Sorry that you had to find us, but so glad that you did. Hopefully we can make this journey go alittle smoother for you.

Hugs,
Debbie from OH
^j^ ^j^ ^j^ ^j^

PS. Don't forget to try real hard on that POSITIVE attitude suggestion................it really does help, even though it is so hard sometimes to hold it!!!!!!

"What sweetness is left in life if you take away friendship? It is like robbing the world of the sun"
Cicero

11

Gayle - I am so sorry to hear your news.  But you have found a family here, and we will help you.  I was dx in 2001 with what they 'think' was early-stage IBC.... tumor grew very fast, was 4.5 cm when it ws finally removed.  I had 5 of 49 lymph nodes positive.  So far (knock on WOOD) I am still in remission.  My aunt also was dx w/IBC in 1998 with 10 (or 11?) nodes positive.  SHe's still here too.... please don't give up, there is reason to have hope, and reason to fight.  Stay strong....   if no ones mentioned it yet. there is a great website www.ibcsupport.org where you can find more info and no doubt more survivor stories.

Welcome to a place none of us wanted to be... but we're glad to help you.... hugs-Stefanie

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

                       To Do What I Do   -Alan Jackson, 2004

12
Gayle:
 
I'm sorry to say, but welcome to the club no one wanted to join.  We are here for you.  I asked how big the tumor was, because in Dr. Susan Love's Breast Book, that was helpful when I was reading about my risk.  Oh, Yeah, and I read Dr. Susan's book, too.  I hope to read more about what you hear.  Please let these women help, Whatever you go through or hear, one of us has probably had a relevant experience. 

"Our greatest glory is not in never falling, but in rising every time we fall." -Confucius
Don't knock on Death's Door.  Ring the bell and run.  He hates that.

Ellen

13
Thanks everyone for your wonderful words.

I kind of went AWOL for a while there. I've been on the biggest roller coaster ever! Dx on Aug 9, met oncologist and did a chemo teach on Aug 11, first chemo on Aug 14th.

I gotta tell you, no matter what you read or hear about the fatigue, there is absolutely nothing to prepare you for it.

I was nearly driven insane last week with the number of tests to determine if the cancer has spread. Bone test. CT Scan. Heart test. My arm is so bruised from needles and IVs that I look a bit like an amateur junkie who hasn't figured out how to do things yet!!

Right now I'm one week out of the first chemo and I'm into mouth sores like you wouldn't believe. I see my GP today. My hair started to fall out on Saturday so I shaved my head.

I actually haven't looked at myself in the mirror yet without a bandana or hat on. I'm still too chicken for that.

TTFN

Gayle
 
Life is short, wear your party pants!

14

Gayle,

You sound really strong but I am sorry for your reactions to the treatment.  Hang in there.  I remember the month after my dx, it was a roller coaster too.  It seemed that all I did was hurry up and wait. 

Hope you can look in the mirror soon.  Remember it is still you and I bet it looks good!!!

Hugs to you,

Candy

Two are better than one, because they have a good return for their work: if one falls down, his friend can help him up.  Ecclesiastes 4:9-10
 

15
Gayle
 
I remember posting about the amount of appointments that you have to go thru in the first few weeks. I thought I would go nuts, but then it finally got into a routine and was alot more managable. My first chemo was bad too, I had an allergic reaction to one of the drugs and was sick for a week. The rest of the treatments went like clockwork. Make sure that they give you good drugs to keep you from feeling naseaus (sp) too. Try to find some time everyday just for you, get a good book, do some yoga anything that helps the stress level. Please remember we are here for you and will help with any questions you have or if you just need a place to vent.
 
Good luck on your next treatment.
Bernadette  :-)
16
Gayle- Just stick with the cute scarfs and pretty knit hats, and don't dwell on the mirror for awhile... it'll be there when your hair starts to grow back! ;-)

Are you getting a port?? I did NOT want one, and started chemo w/IVs in my arm, but after the 3rd round, they blew a vein and had to stick me like 15 times to get a good line going! I said NO MORE and had the port put in the next week... i HATED it the first 2 weeks but then it settled in and wasn't sore anymore and i LOOOOOVED it... wish I could have left it in! ask about it... it makes things so much easier. i would do that again in a heartbeat.
good luck, hang in there!! hugs - stefanie

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

                       To Do What I Do   -Alan Jackson, 2004