Imflamatory Breast Cancer

smithy14975 · New User Joined: 12 May 2007 Posts: 2

Anyone out there get this kind of bc? It is a tough one. I got it and was misdianosed as mastitus. By the time they figured out what it was I was Stage 3 ++++. It was by the grace of God still localized. Took only 2 months from the time I noticed my Breast getting larger to the time it was Starge 3.
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smithy14975

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 637 Location: UK

So sorry to hear of your diagnosis - IBC is very unpleasant. If you haven't already found it, here is a site about it: http://www.ibcresearch.org/

What treatment are you going to be having?

Muttsmom · Posted: Tue Jun 05, 2007 11:42 pm Post subject: Re: Imflamatory Breast Cancer

Hi Smithy,
I just wanted to give you some encouragment. A good friend of mine was dx with IBC 9 years ago and is doing GREAT!!!!!!!
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Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

smithy14975 · New User Joined: 12 May 2007 Posts: 2

[quote="smithy14975"]Anyone out there get this kind of bc? It is a tough one. I got it and was misdianosed as mastitus. By the time they figured out what it was I was Stage 3 ++++. It was by the grace of God still localized. Took only 2 months from the time I noticed my Breast getting larger to the time it was Starge 3.[/quote]

I was diagnosed on July 28th 2006 after a couple of months of antibiotics and mammograms / appointments that kept telling me to come back in 6 months. My family history was bad so I kept pursuing it anyway. I was hoping it was not BC but it was. It was IBC which I hadn't heard of before. It was not hormonal and only border line HER2 so Herceptin only worked sort of. The A/C and Taxol did work. I had 8 weekly of Taxol / Herceptin / 2 month bi weekly A/C and then 2 month biweekly Taxol. The last two cycles were dose dense. Then I had surgery and they found no cancer, just calcified stuff that used to be cancer. All nodes were clear by then so they called it surgical remission?????

Then I had 30 radiations. Now I am just being watched and have to have a CT scan every 3 months and a blood test too I think. Is that good enough to catch any new development? I am told I have a 50 / 50 chance of long term survival, even with the good turn out so far because IBC is bad and comes back much of the time. I am worried they won't catch it with the CT scan in time if it does come back.
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smithy14975

brainman · Posted: Mon Jun 18, 2007 9:48 pm Post subject: Re: Imflamatory Breast Cancer

Hi Smithy,

Surgical remission just means that after the surgery no cancer could be detected. I do not know much about IBC. How often are you seeing your oncologist? How often are you having the blood tests? Every three months with the CT? I don't know what the "standards of practice" are for IBC. If you are concerned, call your doctor for an earlier appointment to clarify these issues. I will keep you in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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