Freaking out

Flo80

Hi there,

I had been diagnosed with DCIS and IDC on June 13 and today I had an appointment with the surgeon and he said that looking at my case its a clinical IBC. My punch biopsy has not come bck yet.I had scans for chest, bones and pelvis/abdomen and they are all clear.There were some lyph nodes he could feel and saw prominent in the MRI skin thickening. Don't know what to do.

Flora

LoriCA

Hi Flora, the IBC diagnosis means you will start with chemo before surgery. IBC always gets chemo first to try to reduce the skin infiltration and shrink any mass (IBC doesn't always have a tumor mass, but it sounds like you might since you were DXed with IDC first?). Clear scans means you are still Stage 3, that's a good thing, there's been good success for Stage 3 with trimodal treatment (chemo, surgery, and radiation). Quite a few people here who are doing very well many years after diagnosis.

Good luck with everything and let us know how you are doing. Most of us hang out in the Lounge thread, stop by and say hello when you get a chance, you will find a lot of support.

GiddyupGirl

Hi Flora - first a big cyber hug, cause waiting really sucks and sometimes our brains are our worst enemies. I've be reading all over the board and there are a ton of IBCers who are doing great. Will keep you in my prayers, wishes (i have a turkey wish bone in my kitchen window - its yours (i'll make the wish tonight).

Rrobin0200

flora,

I know this is a very scary time. To shed some positive light, a friend of mine whose mother in law was diagnosed with stage IV IBC is doing extremely well.. her diagnosis was 10 years ago. You've got this.

mara51506

Flora, I also want to give you a big hug as well. When first being diagnosed with this and even with treatment, fear is paralyzing.

Plans being put in place help somewhat but it is a long road ahead.

I will try to give some encouragement to you regarding IBC and chemo. Because IBC grows fast, it normally responds extremely well to chemo. I can tell you I have been NED from the neck down for the past over 4 years. My MO says the brain met I had was there from the start and these drugs do not cross blood/brain barrier. The fact I am still NED is amazing. I am still physically strong and plan to keep it that way.

Take one step at a time, don't rush your feelings get good emotional and professional supports from family, friends, cancer centre and here. We understand what you are feeling and the fear and always want to help.

I will be thinking of you and sending my best wishes your way.

Flo80

Thank you so much everyone and still I find it hard to take that it is finally IBC. I have been going around from my family doctor to other physicians in the emergency and asking them that does this look like peel de orange or this redness. They kept telling me that the tumour can cause this and also they kept telling me that oh yours is not one third of the breast and it does not look like typical peel de orange. I literally forced my family doctor to get me a punch biopsy. Thank you so much for the hen love and support. I will fight this one:

mara51506

Keep us in mind when you need to talk as well. I have no doubt you will fight. That spirit is helpful to help with the initial fear and upset whirlwind that you are in now.

Keep posting here or on the IBC thread. You are welcome to PM me as well if you need some encouragement. I've been at this a long time, I can offer perspective that you may find encouraging and or helpful as well.

Flo80

thank you everyone. Now that I am diagnosed with IBC I am getting restless and want them to start my treatment soon. Today is Sunday and by when should they get back to me. Thank you everyone in this forum and you all give me strength