Does everyone with IDC start out Stage 1?

ingerp, I'm not sure why you were told any stage prior to surgery. My BS told me the same thing before my LX and I was very disappointed to find out that they really don't know until they do surgery. I guess they are trying to give us hope...idk. I am guessing, based on the results of the biopsy, size of tumor on imaging, etc., they think it is Stage 1. ISo, no, everyone is not Stage 1 when DX'd. I hope you are!

Nope, not every with IDC starts out at Stage I. Some women are Stage IV at diagnosis. I was (probably) Stage III because my lump was 5 cm.+ and one node was compromised. But, we'll never know for sure because I did chemo before surgery, and it wiped out all of the active cancer in my breast and compromised node. So, my pathology didn't really show much, except for a tiny pocket of DCIS.

If you were told you're Stage I, it's probably because your lump is small, not 5 cm.+, like mine. During surgery, your surgeon will check your sentinel nodes; if those are clear, you will probably be declared Stage I.

((Hugs))

Alas, Ingerp, I can't tell you what you want to hear. I didn't get my SNB checked; I had all 20 of my levels 1 and 2 lymph nodes out (and they were all clear). I am still dancing a jig, though, as I didn't develop lymphadema.

I didn't find out the stage or grade til after surgery. No LE after 5 nodes removed.

My first BS said I could be anywhere from stage 1 to 4 and he would not know til after surgery. I was so frightened and went for a second consult. She said that I should not have been told that and while it was always a small possibility, she was quite sure I would be stage 1 with no node involvement. This surgeon was not warm, very competent but all business, but immediately after surgery she found my sister, smiled and hugged her and said everything went well, early stage 1 with no node involvement. Given the way my surgeon embraced my sister, apparently she too was relieved and anxious to share the good news. It reminded me of the birth of my second son. That wonderful doctor was so ecstatic when my baby was born. I commented that you would think it was the first baby he had ever delivered and he replied that unfortunately all do not have good outcomes and so he still rejoices every time he brings a healthy baby into the world.

So to answer your question, they have a pretty good idea prior to surgery what stage you will likely be but nothing in this world is an absolute.

Although it's not uncommon for preliminary staging to be given after a biopsy (based on biopsy results and imaging), the final determination is made based on the pathology report after surgery. Many people do not develop LE from node removal, and although rare, you can develop LE from surgery alone. I had an axillary node dissection and have the mildest case of LE that no one else but me and my physical therapist would notice. I do not wear a sleeve on a regular basis, but do when flying or in high risk situations. No need to feel sad about it. I certainly don't feel sad for myself. As for chemo, I am stage IV ( don't be sad or sorry, please) and have never had chemo (6 1/2 years out from dx). There is no one path or course of tx for "everyone", as breast cancer has so many individual variables. Yes, there is a lot to learn about bc as it far from the single disease that many imagine it to be. Wishing you the best!

PS: I second what Momine has posted. A good PT makes a world of difference and activity/movement is of immeasurable benefit

I'm sorry to learn of your most recent diagnosis. I hope all the best for you!

It may be interesting to learn that they have recently changed how they stage cancer. The changes happened in January of this year:

https://ww5.komen.org/BreastCancer/StagingofBreastCancer.html

If this is the new staging method, then wouldn't sites like these, where the forum topics are broken down into the various stages, cause some confusion for those newly dx? Most people on here familiar with the old way and now newly dx would be categorized with the new staging, you'd have people looking in wrong areas. I did just a little bit of research and these do look like new guidelines. My doctor never really staged me anyway. I did the research in my own and figured it out best I could. There was some confusion I think as I had two sentinel nodes with micromets and two axillary nodes fully positive. I see also there are some new guidelines with how micromets are staged as well.

If there is a thread discussion that i missed regarding all the new staging guidelines, if someone can post link, I'd like to read.

Clickable link to the new staging chart (operamom's wasn't clickable for me): https://ww5.komen.org/BreastCancer/StagingofBreast...

According to this I would be downgraded from IIA to IA, even without incorporating the Oncotype score, since mine is slightly over 11. I want to smile but I feel like it's too good to be true and I need to read it again a few times.

For anyone who saw the post I deleted I want to apologize because the error was mine. There are two separate charts in the AJCC Cancer Staging Manual, Eighth Edition starting on page 40 of the PDF. One is for Clinical Prognostic Stage, and the other Pathological Prognostic Stage, and Komen is using the pathological chart. I was comparing the clinical chart in the guidelines to Komen's copy of the pathological chart and it didn't match. I don't fully understand why clinical and pathological are different when they are basing staging on the same parameters, but they are different. Clinical has me at stage IB, and pathological at IA. Downgrade either way.

Here is the snippet that shows who would be modified to stage IA with an Oncotype DX score under 11:

I have IDC and had stage 4 from the start. They didn't perform surgery on me since they could already tell, just by feeling, that it was invading and causing many of my lymph nodes to become quite large. So instead, I went right to a pet/ct for confirmation of stage. And boom, there is was in my sternum and lungs.

So for me, proper staging was done based on instinct and experience (which I am very thankful for). While there guidelines, I do think experience also can play a factor.