Confused about diagnosis

Karenmimom

I want to start out by saying I just joined this forum a few days ago, and I'm very impressed with the number of women who are far more pro-active with their breast cancer than I am.  I chose to ask very few questions about my cancer, the treatment, and the surgery.  I know the type of person I am (a real worry wart!), I also deliberately did not research much online, either. 

Now that I'm through the surgery, I've decided to look around online and came here.

Because I am diabetic with other health problems, my healing has been slow and I'm currently on a wound vac and once I heal, I'll have 6 weeks of daily radiation.

I was diagnosed just before Thanksgiving, 2009, have had the chemotherapy and a radical modified mastectomy, and as I mentioned, waiting for my wound to heal and start the radiation.  I feel so dumb (after reading how detailed everyone is!) for not asking for clarification on my diagnosis sooner.  I know if I ask the doctor, his assistant, or any of the other staff they will answer anything, but I'm embarrassed.  So, I came here, first, to see if anyone can help me.

In response to an email I sent to the assistant, this is what she wrote when I asked about my diagnosis. 

"Inflammatory breast cancer is not a pathologic diagnosis but a clinical one.  In other words the path report does not state inflammatory it only says that it is invasive ductal carcinoma. Inflammatory breast cancer is determined by how it looks on presentation. Your breast was reddened and had a dimpled appearance which is the way that inflammatory breast cancer presents."

I still don't know the answer.  Do I have IBC or do I have IDC?

Does anyone know what she meant?

I would really appreciate any help.

Karen

sheila888

Dear Karen... Do you know what stage you are?

The best thing to do is call your Oncologist first thing in the morning or talk to that nurse who emailed you.

Let us know what they said.

I will be thinking about you.

Hugs

Sheila

Karen...I edited my post because what I think it means, doesnt really mean anything.

Please report back as soon as you hear anything.

Karenmimom

Hello, Sheila.  Thanks for taking time for me. 

I re-read what the assistant wrote several times and she just doesn't give me a straight answer.  It has to be either one type or the other.

I did ask at the very first meeting with the doctor what my stage was and they said "T4, but don't put any stock in that because everyone diagnosed with this type of cancer has the same number.  This cancer likes to start out against the chest wall, so everyone has the same number."  The words might have been slightly different, but that's what I remember.

It's my fault that I didn't ask any further questions, Sheila, and I'm going to have to do as you suggest and call them.  Now that I see how most people are handling their cancer, I should know more about mine than I do.  I don't even know the answers to many of the questions asked by this website when I joined.  I think I'll copy them and ask them for that information, too.

Thank you, again, Sheila.  I will post what I do learn.

(((HUGS)))

Karen

Karenmimom

This is what I received in response to my email to the assistant:

Karen I wrote in the final pathology which looks very good, however, this pathology is after chemotherapy and you presented with what looked like imflammatory breast cancer which is a clinical diagnosis and not a pathologic one.  You had a great response to treatment.

Answers to the questions at registration on this site:

Diagnosis:  Invasive Ductal and Lobular Carcinoma

Stage - I T1NOMO

Lymph Nodes Removed - 4

Positive Lymph Nodes - 0

Tumor Size - 1.5

Tumor Grade - 2

Hormone Receptor Status - ER/PR negative

HER/2neu Status - Positive

Could someone please help me to understand what the above means?

Many thanks!

Karen

sheila888

Dear Karen you do not have IBC.

You have IDC and ILC

You are ER- PR- HER2+

your Diognosis is stage I

And since you are ER- PR- do not need to take hormone pills.

Grade 2  means how aggressive the cancer cells are and 2 is a good number.

They go grade 1 2 3. 3 been most aggressive.

We have a group called 'CALLING ALL STAGE ONE SISTERS'  PLEASE COME AND JOIN US YOU WILL GET SO MUCH INFORMATION THERE.

HUGS

SHEILA

For example, a T1, N0, M0 breast cancer would mean that the primary breast tumor:

is less than 2 centimeters across (T1)
does not have lymph node involvement (N0)
has not spread to distant parts of the body (M0)
This cancer would be grouped as a stage I cancer

MarieKelly

Karenmimom wrote:...I did ask at the very first meeting with the doctor what my stage was and they said "T4, but don't put any stock in that because everyone diagnosed with this type of cancer has the same number...."

Karen, based on what you report the doctor said to you about the cancer being T4 and that everyone with that diagnosis having the same number, it sounds like your doctor believes you had IBC and then treated you accordingly. IBC is always defined as either a T3 or T4 cancer so assuming that's really what he thought you had, what you heard him say makes sense. You need to clarify this directly with the oncologist, so that you won't be left wondering what type of cancer you really had. 

The email you mentioned in the post that started this thread accurately explained it...IBC is a CLINICAL diagnosis. This means that a pathology report done on the internal breast tumor isn't necessarily going to call it IBC. The pathology report is going to call it DCIS, IDC, LCIS etc and then the oncologist further classifies it as IBC based on his visual observation of what the external breast looks like.