Stage 5 Breast Cancer

[JoMomma]

My identical twin sister had a double mastectomy 3 years ago. Cancer was found in one breast only, but she opted to have both breasts removed as a precaution. In the beginning she was classified as a Stage 1. She has had two rounds of chemo and the general course of radiation. She completed her routine tests (every 3 months) last week and reported to us that all the results were "good." I am happy to report that all her previous tests have also been "good".  My concern:  She took me aside and told me that she was now at Stage 4. I was under the impression that stage 4 is NOT a really good thing.  I asked her about that and she told me there are now two groups of "stages" by which breast cancer is rated.  One is the original 4 stage plan and the other is the "newer" 5 stage scale for breast cancer in which a "4" is not "as bad."  I have searched the internet for hours today looking for information regarding this new scale of staging and can find nothing. Is this a very new thing? I am bewildered.  What can anybody out there tell me?

In additon, I am swimming in a VERY nasty gene pool of breast cancer.  Virtually every female relative in the last three generations on BOTH sides of my family has had breast cancer--except two cousins and me.

[ronde]

A related discussion, What is Stage 5 was started.

[virg m]

Could she have been referring to the BIRAD scale?

[CCF-RN,MSN-JS]

Dear JoMomma, There is no stage 5 breast cancer.  Breast cancers are classified within 4 stages based on a TNM staging system.  TNM stands for tumor, nodes and metastasis.  If your sister had a stage 4 breast cancer that would mean that there was evidence that cancer had spread to another area of the body, distant from the breast.  It may be that she has misunderstood something in terms of a numbering system related to breast cancer?  

In regard to your risk of breast cancer, it is increased just based on the fact that your sister has breast cancer.  You may want to seek the opinion of a genetic counselor to help you to determine your actual risk and consider a plan for surveillance.