How fearful should I be of this disease?

Toryrose

Prior to this past Thursday, I had never even heard of IBC- I am waiting for an appointment this Thursday to know more.  There is no family history of breast cancer.  I had done a mammogram and ultrasound less than a year ago (all was clean and clear).  I started showing some swelling in my left breast around October.  Called the doctor and saw her in November. Had a biopsy done Dec 11 and just got the results which says that I have IBC.  HELP!! what comes next???

leisaparis

Have you not had anything done since Dec. 11? Did it take this long to get the results back.?Tests,tests and more tests. Sorry you have to join us. After my biopsy they also did a cat scan, EKG, and an eckocardiogram and a couple of others. I have no history of breast cancer in my family either. All my mamograms and untrasounds showed nothing. IBC is a very aggressive breast cancer. If you have IBC you are already at stage 3, automatically. There are only 4 stages. These days it is a treatable disease. You have to catch it early, and be very aggressive with your treatment. Don't let them go to slow. Do you have it in your lymph nodes? My treatment so far has been Chemo (12 weeks..weekly treatments...Taxotere & Herceptin), 12 more weeks chemo ( 4 big with Epirubcin,5 FU,Cytoxan, & Herceptin) then 8 little ones with just Herceptin. It will be 1 big, 2 little, 1 big, 2 little, etc... until the 12 weeks are over. Then surgery ( sometime in April ), radiation and a year of Herceptin to follow. Herceptin is a maintenance chemo. Come here for any questions you may have. There are a lot of women on here who will be able to help you. Good luck and God bless. Sending good thoughts your way.......Leisa

ateepay

In answer to your question, "What comes next"   I would say a doctor that knows about IBC.

Time is not on your side and waiting this long .... is not acceptable.  There are doctors across the U.S. that can be of help to you.  If I can help in any way, please don't hesitate to write or call our toll free number and we can call you back.

Patti Bradfield, President  The Inflammatory Breast Cancer Foundation

www.eraseibc.com 

Toryrose

Yes, it took from Dec. 11 to Jan. 7 to get results - I did not even have an inkling that it was breast cancer.  It was being looked at as an absess.  If this started in October (with visible symptoms- minor) and has been diagnosed only now- is it too late??  Is stage 3 consdiered terminal with type of disease. 

I am from Monreal, Canada and after  I met with my doctor (replacement doctor as mine was on maternity leave)- she set me up with "one of the best" in this field.  However because of lack of info he could not tell me much. Right now I will be doing 2 more ultrasounds (did a chest x-ray) and will meet with him this Thursday to discuss more (I hope).  

My outlook is very postive- but when I read anything about this disease it sounds like a death sentence.  Are there statistics..I know this is hard to say as to how far this disease has gotten- but if I did a mammogram and ultrasound last spring- isn't this still early?? 

Thank you for yr supportive words- I beleive I am in the freak out stage right now!!

concernedsis

Tory - sorry you have to go through this.

Inflammatory breast cancer is considered more rare and aggressive than IDC - or the garden variety breast cancer. So please be assertive with your physicians about moving things along. Its a form of breast cancer that can spread very very quickly like days or weeks or even hours so a negative mammo 6 months ago might not have helped.

It will be stage 3 at best depending on where it has spread to - very locally IIIb - chest, skin or under arm lymph nodes, IIIc lymph nodes under collarbone or neck or stage IV which is spread to other organs. So you will likely get things like a CT chest, abdomen and pelvis and maybe a PET scan of the body. 

Docs will tell you if its estrogen & progesterone positive or negative - that will help decide if hormonal treatment like tamoxifen may help; they will tell you if its HER positive or negative - thats a sign of a more aggressive cancer but there is a drug called Herceptin that can be used if its +. 

Try the boards under inflammatory also. There may be other treatments as well.

Stay positive - arm yourself with knowledge and surround yourself with family, friends and great doctors and nurses and fight!

Prayers your way - good luck!

leisaparis

It is very treatable these days. You need a doctor who knows what it is and how to treat it. It's not a death sentence. You can survive this, but you have to be very aggressive with your treatment. As soon as they find out your estrogen/progesterone receptor status and your her 2 status it will help on determining your treatment. As soon as they found out mine I was started on chemo right away. Like within a week. So be very persistent. Get things going. It will help in the long run. Good luck and God bless.     Leisa

SDHummingbird

I had IBC. I had not been feeling well starting in October of 2005 (tired, thin hair, stomach pain, nausea). I went to the doctor in January and they began testing everything in my abdomen and pelvic area. In late February I was given a test for ovarian cancer. My doctor said if the number were high, I should go see a OBGYN. A week prior to my appointment, I began to feel hardness in my lymph nodes and chest not a lump. I thought it was from swimming and I pulled a muscle. When I went to the OBGYN on March 10th, she gave me some antibiotics and checked my breast because I said it felt funny. She said the first thing they had to do was antibiotics. She could not tell at that time if it was IBC because it had not began to turn color (red & blue). On March 17th I could not take the pain anymore and I called her. I went in and she new it was IBC and immediately sent me to the hospital. I also knew because like you, I was looking at the horror stories on line. A biopsy proved it was IBC stage IIIC and HER +. The interns and nurses asked to see my breast because they had never seen IBC before. I was happy to show them so they could learn for the future patients.

I was starting chemo within two weeks. I had 6 rounds of chemo, a radical mastectomy and 32 days or radiation. I am happy to report that I have been three years cancer free. My oncologist said it is amazing and my recovery something I should be very happy about. IBC if caught early can be treated. It is a difficult trial and the recovery takes much longer than other cancers. I am on Femara which I hate, but I know it is the best for me.

Luckily the websites in the last three years have changed their "death sentence" for IBC and said it can be treated if it has gone to the lymph nodes only.

Hang in there and go on this website when you can. Three years ago I could find only one or two people with IBC, no it is being diagnosed earlier and you can find more survivors to talk to.

Anonymous

"Luckily the websites in the last three years have changed their "death sentence" for IBC and said it can be treated if it has gone to the lymph nodes only."

Okay... I read the above sentence and I am not sure what to make of it.  I have bone mets and probably have spread to my lymph nodes, but since I haven't had any surgery yet, I haven't had any lymph nodes to check.

 I am on Taxol first to reduce my tumor IF I have a mastectomy at this point that is questionable... Moffitt cancer ctr said no need to have surgery if I have mets already.  Is Taxol considered aggressive treatment?  I am told it is gentler and since I have mets they want to go gentle with me to see if it works before hitting me with the Red Devil AC...

Having Bone mets changes my 'death sentence' statistics? 

Is that because the lymph nodes can be surgically removed? And bone mets can only be contained if all goes well with chemo?  I was under the impression IF you are going to have mets spread that the bone mets is easier to contain than say liver or lung or brain mets.

All I know is that I am in the second month about to have round 3 of Taxol and today has been one of the achy 'hating life' days.  I keep thinking I am on the 'gentle' chemo and have no reason to grip... I know the Red Devil AC is way rougher...

Is it normal to just feel 'off' in general while under chemo... Even my good days aren't what I remember my normal days being prior to this cancer diagnosis...

I don't allow myself to think death sentence thoughts typically... but today I have that 'if I was a horse, I would be glue factory material' melancoly...

I have talked to a handful of women who are 10 plus year IBC survivors...but what I would like to know is how many women on the Boards have passed from IBC in the last 10 years... any idea?

Judiiiii

Joy, Please know if you really want to know the survival stats for your type of BC, you should ask your onc.  Women (men) who go to websites such as BCO are likely not representative at all of the population of women with IBC.  You might not like what you see from BCO and it likely is no indication of the real stats.  Best of wishes.   Judi

P.S.  I was on the Red Devil for longer than recommended (long story) and had no problem with it.  Even vacationed in Hawaii while on it!  Everyone responds in their own unique way.  Again, best of luck to you.