I called M.D. Anderson

LJI

I reffered myself to the M.D. Anderson clinic. My left breast continues to agonize me. The pain is awful, both on the side and in the nipple. It kills. The vein leading to the nipple is engorged. I woke up yesterday and had what appeared to be bug bites. This morning, my right breast has been taken over by a tremendous rash. So this all started about 9 weeks ago now. If it is IBC can it have already spread to my right breast? Has anyone had this happened to them.

Linda

TenderIsOurMight

Good for you, Linda. They have much knowledge on IBC at M.D. Anderson, and given your problems ( I recall your past post) why not look out for yourself. 

I'll give this a gentle bump in hopes someone who has experience may help you.

Glad to see you took this step...

Tender

Faith316

Just wondering if you went to MD Anderson yet.  I also went there -- mid July.

LJI

Yes I went to M.D. Anderson on Tuesday. I went to the undiagnosed breast clinic. I was told withoit certainty that I do not have IBC. No biopsies were done. The rash that I have I have been told is not a rash but and dermatitis. The pain that I have I have been told is pain from hormones even though I have had a hysterectomy. Apparently stress and various foods can increase hormone levels and therefore cause pains. I think it is all BS myself. I have not had pain like this ever or itching.

How did you make out?

 Linda

Faith316

They told me to stop Herceptin and start daily oral chemo -- Tykerb and Xeloda.  Want me to take a few months of the chemo before I have surgery.  So far so good.  T and X are much easier to tolerate than AC and T were.  No hair loss for most people.  Not as sick with these drugs.   I go back in mid-August.

If you still have a nagging suspicion that they are wrong about your rash not being IBC, ask for them to do a punch biopsy.  I had a punch biopsy and an excisional biopsy to get some deeper breast tissue.  Both of mine came back positive.  At least it will ease your mind a bit.

LJI

I am sorry, but it pretty much is disconcerting at this point that no one wants to do a biopsy. I guess I am totally crazy and have made up all of this. The itching, the fulness, the tremendous pain, the stabbing nipple pain, the rash witch looks lick a bunch of bug bites becuase they do not like me to use the word rash. The blotchness. The breast fullness as if I am ready to breast feed 10 kids. Yep, I guess this is all normal. Let me remind you, total hysterectormy in 99, including ovaries, no hrt. Never had these problems before.

What's the deal. I am getting old. I am eating a bunch of foods with hormones. Lets get real people.

Faith316

(I posted a reply a few minutes ago, but for some reason, it didn't show up.  So, if two replies show up now, I apologize for double posting.)

Find somebody who will do a punch biopsy.  Even a dermatologist can do it.  It is your body and your life. 

I was initially dx with invasive ductal carcinoma in April 2008.  Had a lumpectomy and axillary node dissection (2 out of 8 nodes were malignant.)  Had 4 rounds of AC followed by 12 weeks of Taxol and Herceptin.  The Herceptin infusions were to continue until September of this year.  I also had 30 rad treatments.

Before I was dx with IBC, I had the fullness (swelling), peau d'orange, breast hot to the touch and rash.  My rash started while I was still taking radiation treatments so I thought it was a side effect of the rads.  I was also still taking Herceptin treatments.  When the rash didn't go away, I had a mammogram and it was normal.  I also saw my surgeon, my medical oncologist and my radiation oncologist.  They all did not think it was IBC.  They said I wasn't presenting like a "textbook case" and therefore didn't really think it was IBC.  But, guess what?  They were all wrong!  When I had my punch biopsy and also an excisional biopsy, they both came back positive for IBC!

None of my doctors have ever had a patient who got IBC while still in active treatment.  Even my specialist who I was referred to in the IBC program at MD Anderson Cancer Center had never had a patient who did.  

Listen to your gut.  If you think it mght be IBC, don't quit until you find somebody who will do that biopsy.  Your life could depend on it.  I'm sorry you are having to go through this.  Hope this helps.