Confused by some signatures

Grandi

Hello  everyone. I've been trying to educate myself by doing a lot of reading here. I have noticed that in some signatures the history says mets. But when I read the persons story, they say something like , Stage 2, 2/15 nodes, BMX and then they list treatments. Nowhere does it say they changed to Stage 4. I am hoping that they are just considering the fact that nodes were involved as having mets. Can someone explain?  Thanks.

Moderators

Hi Grandi. 

Metastatic (advanced) disease means that the breast cancer cells have found their way into the bloodstream and traveled to other parts of the body, like lymph nodes beyond the armpit area, so it could be exactly what you mention. Signature and My Diagnoses are different sections under My Profile page, so could be that those members had updated their signature after a new diagnosis, but forgot to update the other? Just a thought.

The Mods

lintrollerderby

If the poster has distant mets, but their signature states a lower stage and lists mets, then it's because they were originally diagnosed at the lower stage but progressed to having distant mets. Some posters will list Stage IV if they develop distant mets, but many do not. The reason for this is that while some people are formally re-staged when they develop mets, most are not re-staged and just have their early stage amended to include metastatic disease. The reasoning for this is so cancer registries can track those that are diagnosed initially at Stage IV vs those who develop metastatic disease after a lower stage diagnosis. Even though many, many oncologists and patients use metastatic progression and Stage IV interchangeably, they are not technically the same thing. For most people who progress, their stats at least as far as the registries are concerned, will always be the lower stage but include a notation that they have metastatic disease. 

I've pasted some info on the subject from The American Cancer Society's website. This subject has been a source of confusion here on the boards in the past. For many, they just list Stage IV and the date they were diagnosed with distant mets, and everyone knows what that means; however, if you are looking for the true difference between Stage IV and Metastatic Breast Cancer, then it's just that the patient is supposed to always be classified as the original stage. 

From ACS:

A cancer’s stage does not change

An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed—information about the current extent of the cancer is added to it.

For example, let’s say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment. But then it came back with spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it’s called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it’s not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it’s first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.

This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

At some point you may hear the term “restaging.”Restaging is the term sometimes used fordoing tests to find the extent of the cancer after treatment. This is rarely done, but it may be used to measure the cancer’s response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often this involves the same tests that were done when the cancer was first diagnosed: physical exams, imaging tests, biopsies, and maybe surgery. After these tests a new stage may be assigned. It’s written with a lower-case “r” before the new stage to note that it’s different from the stage at diagnosis. The original stage at diagnosis always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, except in clinical trials.

Kicks

Anyone can write anything they want to.

There does to be some 'different' ideas as to what mets are with some.  I will go with what all my Drs (and my research) say - positive nodes in breast area (to include axillary and clavicle) are not considered mets.  Mets are when breast cancer shows up in distant areas having spread via the lymphatic system or blood -thus Stage IV. These have particular characteristics that link to breast cancer.  Not all cancers that develope AFTER BC are considered mets, thus not mets but different unrelated cancers.

I am one who has developed 2 different cancers post IBC DX - BCC (Basal Cell Carcinoma) and SCC (Squamous Cell Carcinoma) which are both forms of skin cancer.  It was expected as I'm VERY 'pale' naturally (but tan great) and had a lot of pre-cancer spots burned/frozen off for a lot of years pre IBC.  I've spent most of my life outdoors and being as old as I am, most of that time was before sun blockers.  One of the places that IBC 'likes' to met to is the skin so that was a concern to me.  All the path. reports definately say NO METS - just different cancers unrelated to IBC.  So I am still Stage IIIc as I came oit of surgery as.

That said - my understanding is once BC mets, are found no matter what your original Stage, you move to Stage IV but other non-related cancers are found, they do not move you to Stage IV.  Just how it's been explained to me by my Drs - others Drs may have explained it differently to others.  19 of my 19 removed nodes were positive and I was staged as IIIc.

We are each so unique and 'where we are' is so different.  Talk to your Drs about your concerns.   Fortunately the internet/this site and others, make it easier to find info today than years ago.  Unfortinately, there is a lot of bogus 'stuff' (on ALL subjects) 'out there' and 'people' can represent themselves however they choose.  The vast majority of us are who we are/how we feel BUT there are some who aren't.  Some of us are more open about anything - some aren't.  We are each unique and special in our own way.  As long as we are who we are and something made up for whatever reason which does occasionally happen.

lintrollerderby

A great deal of patients and even physicians use the terms metastatic recurrence and Stage IV interchangeably. Most people on this site do as well, but the reason there are so many places where it is listed as "Stage IV AND Metastatic Breast Cancer" is because technically there is a difference. Even the forums on this site make a distinction between the two. I must say, I'm putting this info here for informational purposes only, not because I'm pushing for the distinction. I, myself, use the two interchangeably, but it does help to know the difference. And there is a difference for a very important reason. If researchers are looking to see who has recurred after treatment, they need to be able to discern who actually recurred vs. who was Stage IV from the start. So, from that standpoint, it's crucial to have a way of differentiating. But, for our purposes on the boards, we know what it means when we see it listed either way.

I also meant to address the other part of the post above and I'm glad you addressed it, kicks. Even though a spread to certain local lymph nodes are mets, it's not considered metastatic disease because it's not distant---unless it's distant or contralateral lymph nodes. I've seen several posters on the boards who were frightened by their pathology reports because they saw the words "metastatic" or "metastasis" in reference to the ipsilateral axillary lymph nodes and they were terrified that they had metastatic disease. So, while mets does technically mean spread, having positive ipsilateral nodes (axillary, subclavicular, intramammary, or internal mammary, etc.) does NOT mean you have metastatic disease. 

Grandi

Thank you all. I think I am a bit clearer on this now. The poster who made me really question this has her whole story written out and even in the story there was nothing to show me why she had listed mets in her history. It made me wonder if she progressed or if she was using mets to mean she had axillary node involvement.