Staging terminology

We have had many discussions on this before as well this explanation from ACS. I understand what this piece is pointing out, but in reality most of us just say stage IV even if we were lower stage at initial dx. After 8 years , I have never said I am stage IIB with a bone metastases. BTW, the time between my initial dx and discovery of the bone met was about 6 weeks. Considering that it was grade 1, I was never really IIB , was I? Anyway, regardless of what you call it, it stinks

I also wonder if “staging” affects access to social security benefits... eg in Australia if you are stage IV you are automatically eligible whereas other stages are not.

Jackie

Actually it does matter what it's called for purposes of statistics - many people don't realize that SEER data for metastatic/Stage IV breast cancer only includes people who were diagnosed Stage IV de novo. That's why everything you see about the number of people living with mets and the approximately 42,000 dying every year from metastatic breast cancer are only estimates. They started with the number of deaths from breast cancer, assumed that everyone who died from breast cancer had metastatic disease, and then backed into estimated numbers and percentages based on the number of women who were diagnosed at any stage, the number they assume will later metastasize, and survival statistics. I read the white paper that described the methodology used by the researchers who came up with those numbers when I was trying to determine the number of people living with MBC in my county using the SEER database. I was surprised to learn that there is no official record when someone progresses to Stage IV. If you are added to the database as Stage II, you will always be counted Stage II.

Only a small percentage of us are Stage IV de novo. If you are diagnosed at an earlier stage and later progress to Stage IV, you aren't counted in the official SEER records, so no one really knows how many of us there are. Many believe this is one of the reasons that MBC doesn't get the attention we feel it needs.

One would certainly think so DivineMrsM. The fact that we don't even have accurate numbers on how often breast cancer metastasizes, let alone how many of us are living and dying with it. because it is not officially tracked is mind blowing. It's all guesswork. Educated guesswork, but it's still just estimates.

I can’t recall ever seeing survival stats based on this definition (stage 2 with bone Mets). Can you point to some

I must be one of those restaing peeps but they haven't assigned me a new stage as far as I know , only that they are going curative and treating me as If I wasn't stage 4 with the incurable mindset (mastectomy , rads, aggressive treatment). This was changed when they saw everything resolve so quickly and positively. My file might have that “r" but I don't routinely get to see my chart .

I don't know what the future holds , but I'll take it as a cautiously good sign

It’s counter intuitive because the word “Stage” seems to describe the disease going through different phases or stages of severity.

But in actuality , if the disease does become more severe, they’re still referring to it as less severe.

My sister couldn’t understand why I was not considered a lower stage than IV after two clear scans. But, not moving backwards makes a little more sense to me. Saying ok, once the cancer has moved beyond the breast, it’s in a different category, even if you go into remission (NED) - that seems consistent with the “Stage” terminology.

But “Stage II with bone mets” not so much

I wonder why they told you up front it's not curable and terminal. Loco-regional recurrence is not the same as metastatic/Stage IV, which is when distant mets develop in other parts of the body. Everything I have read about loco-regional recurrence is that it should always be treated with the intent to cure, and although it may not always be successful, it should at least be attempted. Unless your country uses a different definition than others do? Where are your mets (sorry, says "Other" on your profile)?

Example: "The locoregional recurrence of breast cancer is not a sign of distant metastases, and a substantial proportion of cases are cured by salvage therapy. Patients with locoregional recurrence should not be treated with palliative intent as if they have visceral metastases. The recommended treatment for ipsilateral breast recurrence after breast conservative therapy is a mastectomy. For patients who suffer from isolated chest wall recurrence after mastectomy, a surgical approach is recommended. Neoadjuvant chemotherapy is considered for patients with unresectable disease in order to render the disease resectable. For patients with isolated chest wall recurrence who have received no prior radiotherapy, postoperative radiotherapy involving the chest wall and regional lymph nodes is recommended. Patients with isolated axillary lymph node recurrence should be treated with axillary dissection or resection. Although the effectiveness of systemic therapy for patients with locoregional recurrence is unclear, there is a trend toward treating patients with supraclavicular lymph node recurrence with radiotherapy plus systemic therapy. Pain relief and the eradication of other distressing symptoms resulting from inoperable disease are achieved in two-thirds to three-quarters of patients by radiotherapy with or without systemic therapy. New anti-cancer agents and molecular target therapies should be evaluated with the objective of improving the treatment outcome of patients with locoregional recurrence. A combination of approaches is required for treatment of patients with locoregional recurrence, and a multidisciplinary tumor board should be organized at each institute." https://www.ncbi.nlm.nih.gov/pubmed/20449777

Hi Lori

I appreciate this and no you were not insensitive in any way. The report from the UK professor did use the phrase loco- regional recurrent bc. The tumour was in the superior mediastinum area, not in any organ. It was a small recurrence. Between the 2 specialists there seems to be some difference in the terminology used.

Before I started THP I was considered for the CORE trial which I believe was attempting stereotactic radiotherapy for oligometastic patients like me. Unfortunately my tumour was pressing against the left internal jugular vein and so despite going to several MDT meetings I was denied this route.

Since then I have had an excellent response and my oncologist is hopeful of a long term response, yet he still makes it clear that I cannot be cured.

I know this sounds ridiculous but I have never really challenged the staging side. I am on the right treatment and of course hope that maybe O am in that intermediate category before distant spread occurred.

L x