I have IBC...do you? Please Read!!!

carmadi

Hi Tamara - my best friend Eileen has been battling IBC for the past 7 years.....shes doing fine.....as a matter of fact, we're going on a cruise with our husbands in May!!!!  Yes its been difficult for her, but shes got a great onco...she looks great and feels great.  Dont let this diagnosis scare you - all cancer is scary.  A little advice......eat alot of raw veggies and fruits, cut back on red meat and dairy items and avoid sugar - cancer feeds on sugar......eliminating these will help your body fight this .  God bless you!!!!

Nickicole70

Hi ladies, I have been on an emotional rollercoaster the past few weeks.  I was wondering how your ibc started?  I have had a rash on only one breast for over 5 weeks.  I have tried hydrocortizone, neosporin, fungal creams, yeast creams, etc.  My gyn is sending me to a surgeon on Wednesday, after he mentioning ibc and that he doesn't think it is, but wants to be sure.  My breast has a spotty red rash and seems to be spreading.  Not swollen or inverted nipple. sometimes warm.  Just really itchy and seems to be getting painful at times.  I am 37 yrs 2 years post hysterectomy for endometriosis.   I am reading some very scary stories.  Anderson Cancer center symptoms show pink or red rash as a symptom.  Any of this sound similar?  Thanks for any help you can offer.

Nicole

jan40

Hi Valgalrunning,  I was diganosed with IDC grade 3 in April, followed up with lumpectomy and then radiation.  After surgery I developed a red area above the nipple not near the tumor site which Dr treated with anitbiotics didn't change but he said we would just watch it.  I then had radiation so ofcourse whole breast got red,though this area got little worse.  However now radiation over this area is still there and tender with occassional sharp shooting pains.  Now I wonder is this all because of surgery, radiation or could it be something else.  I think the one reason I am worried is after surgery Dr did mention that they did question if cancer was in lymphatics and or in skin but decided it was not.  I don't want to be a paranoid pt but also want to make sure I am not ignoring something.  Is is too close to surgery and radiation to even worry.  Thanks for reading jan 40.

Bliss

Thank for the warm welcome from everyone - I appreciate it very much.  I had my second round of chemo today, and it went very well.  My hair is starting to turn loose today, so time to get my waist-length hair cut off.  No biggie - just hair.

Suzyq18 - the doctors I have spoken to frown on reconstruction for IBS because of the high recurrence rate.  If I am more insistant about options they also give the "at least 2 years out time line" or say "5 years is even better."

The more I know, the more I believe I will end up have a double mastectomy so I do not have to worry about the cancer free breast showing cancerous at a later date.  For now I am just trying to find out all the information I can and try to make the best choice for me.  I CAN live without boobs.

I actually have IDC and IBC.  The IDC has a grade 2 tumor (more like scattered shot.)  As I understand, my IBC is stage IIIb with no mets, no palpable nodes, and seems to be a slower growing kind than my oncologist, radiologist or breast surgeon have seen before.  I am ER+, PR+ (I think) and Her2-  When I have surgery, some of that could be subject to change. I know my oncologist also intends to use hormone therapy (blocking Estrogen.)  My chemo is ACT, every other week.

Blessings, prayers and positive thoughts to all,

~Bliss

suzyq18

hi bliss, hope you are doing well, i lost all my hair after the first round of chemo,but glad to say i have a full head of hair now. my cancer is er+pr+ so i take tamoxifen  will you be having a masectomy after chemo.  i am not going to bother with reconstruction i am quite happy with my silicone boob at the momen,t my surgeon wont do it for 2 years at least  due to it coming back. hope you feel ok after your chemo, look after yourself sue

Rachelle923

My Mom was diagnosed in 2002 (at age 57) with IBC (chemo, mastectcomy---only one breast, wanted both and now it has come back to bite us---okay, so chemo, mastectomy, chemo and radiation it ended up being one full year of treatment. THEN.........in 2007, almost 5 years later it came back in her other breast.  so first time she had adriomycin/taxol,cytoxin, methotrexy (i think) then last year it was 5fu, cytoxin and methotrexy (along with radiation and surgery).  so after that second full year of treatment they waited 6 months for a pet ct.  And, now in liver. they tried Genzar and Avastin but she did not respond, she grew another tumor on her chest wall.  SO...................now we are in a clinical trial starting as we speak with Ixabepilone (oral).  This is approved IV but she is in oral trial.  Wish we would have had both breast removed in "02......Good luck, it's been 6 years.  Suspicion in lungs but not confirmed yet!  Hang in there, it;s a roller coaster but she really did have 5 cancer free years........

Rachelle923

please now that my mom is triple negative!

Anonymous

I was just diagnosed with IBC yesterday. The hardness,redness and swelling that the docs hoped was an infection from my biopsy has not responded to two antibiotics,and the skin is now orange-peel looking. Plus it itches like crazy and hurts to touch!

No lymph nodes are involved, thank God. It was quite a shock to go into the appointment believing I had a manageable stage II IDC and was going to have a lumpectomy after my chemo to this. I am numb.

I am starting chemo next Wednesday. Had a port put in yesterday. I need to hear from you out there who are making it through IBC and surviving.

I am single, but have a wonderful boyfriend who is always there for me. He says he is attracted to my spirit and personality, not my breasts.

Bette

DianeE

Bette,

Sorry you have joined the club.  I was dx last July and went through treatment through March of this year.  Currenly on tamoxifen and life is pretty much back to a "new" normal.  You are the first IBC I have heard of with lymph node negative.  Glad you have support from your boyfriend.  It is wonderful to have people to lean on.  Rest during this journey, let friends help when they offer and remember you do not have to be brave all of the time.  Come back to this site frequently.  There is a lot of help to be found and women who will give you support at all hours of the day.

Diane

Bookworm

I am a bit confused, Betty. Did your docs remove lymph nodes when they diagnosed?

I as 22/26 cancer at my masecctomy in Feb.  

shrink

Bette, I was dx in May of last year.  My understanding is that IBC always is Stage IIIb or Stage IIIc unless there's been metastisis.  But there are lots of women living with IBC years from diagnosis.  So, it's a scary journey but we're here for you as you go through it.  I'm glad you have a supportive BF.

justamber

Hey Jan40! My mom had a simular symptom with the sharp shooting pains on her breast. Come to find out she had fluid build up on her lungs. That's what was causing the pain. She was freaking out because she thought the cancer was getting worse. Well, it turned out not THAT big of deal. They put her on Lasiks to help the fluid decrease. After a few days, the pain went away. Good Luck and GOD BLESS!