Hi barbe,

I think there is often confusion about labels when it comes to recurrence. I was originally Stage 1 four years ago. I recently had a local recurrence, so my doctor tells me I am (and will always be) clinically categorized as Stage 1 with local recurrence. We are watching a lesion on my lung and two distant lymph nodes; if they respond to my current chemo regimen my MO has said my diagnosis will change to Stage 1 with distant metastases. I will never be classified as Stage IV; that is only reserved for those who are Stage IV from the get-go. Every journal article I read supports these classifications as well.

That being said, for simplicity's sake on BCO and IRL, it seems we use Stage IV to distinguish those who have distant mets to organs or distant nodes, regardless of whether it was from the get-go or as a later recurrence.

Barbe,

Well, technically, that appears to be the case. One would say, as in my case, I am IIB with metastasis to the femur, however, more commonly we say weare stage IV ( even if not at initial dx) or have MBC once mets appear. On my PET scan reports it simply says... History of metastatic breast cancer. Whatever you call it, it's still the same stinky situation.

You mentioned on another thread that your doctors classified you as Stage IV, so I'd listen to them. I do remember you and I had a similar conversation on another thread a couple of months back about an article posted here on BCO; I reached out to the Mods for some clarification about the concept of both local and distant recurrence being considered "advanced stage", and they explained that it was a "fluid phrase" meant not to designate Stage IV (which we would consider "advanced" stage as opposed to "early" stage like Stage I or II) but rather the need for more advanced treatment as a local recurrence is a genuine concern. They explained they would make that distinction more clear in their monograph, but I haven't checked it of late.

This must be so confusing for you!

(((Barbe)))

Yes, we gotta talk the talk that people understand.

Statisticians may be a breed apart from us mere mortals - sometimes difficult to decipher their works.

A few years ago, I attended a breast cancer conference and sat alone at the Stage IV and metastasis table waiting to find others. Newly diagnosed women with underarm lymph node metastasis kept wandering over and I explained the difference between early and later stage disease. They were happy to leave the table.

So, I don't say metastasis anymore, too confusing, too many syllables.

I just say instead, I live with advanced breast cancer.

Barbe, whatever you call it, it's a lot to wrap our heads around!

Much loving kindness, Stephanie

Basically what we all have is "metastatic breast cancer". That's a term which doesn't involve stage. Given the people who use this forum, that should probably be the name of it.

As Stephanie pointed out, all this terminology has to do with the way the American Cancer Society keeps records and statistics.

It's a major thorn in the side of women with mets because the ACS doesn't actually know the number of women living with mets, nor when they were diagnosed. They only know that a woman with Stage X has died of breast cancer. So they can provide 10 year survival rates of women with Stage X, but not of women with mets.

There's been discussion around changing that. I don't know how much progress "they" have made.

I am a little confused. So that means the stats for stage IV breastcancer are not accurate for metastatic breast cancer?

singlemom, the stats from the American Cancer Society for Stage IV disease only include women who were diagnosed with mets out of the gate. The rest of us are not included.

However, the stats which come from clinical trials who include people like you are definitely applicable to you. For instance, the palbo trials for ER+ or the Cleopatra trial for HER2+

Fun times!! Annoying ones too.

I would like to point out that what happens to a population does not apply to any given individual. None of us have a particular "use by" date.

Sorry, this got very long and went off on the tangent of SEER, science, statistics and stories - something I've pondered for decades. - Stephanie

xxx

Hi Barbe,

Yes, we do witness the deaths of so many of our friends here at bco. Stick around Forum 8 and your heart will break again.

I've only been a bco member for 6 months, though I read selectively for years.

In this forum, members often just disappear and it's hard to know where they've gone, how they are or even if they're alive or dead.

btw, I didn't post the SEER tongue-in-cheek, but because I like to consider all perspectives...including ones like SEER's and ACS's and clinical trials and medical journal articles that too often treat living human beings like statistics or lab rats.

Descriptions of extreme medicine read like torture to me and, while it's difficult to separate my feelings from their "just the facts, ma'am" reporting, I think it necessary to understand various approaches.

And, yes. I give more credence to first-hand reports like yours, Barbe. And stories from those living through various treatments, complications and disease progressions.

When I first began this advanced breast cancer thing, the state-of-the-art treatment was high dose chemotherapy with bone marrow or stem cell transplant. A few folks (medical pros and others) tried to convince me it was the way to go, based on "just the facts" and the best statistics. My gut feeling was, "nope, not for me, thanks."

It turns out the numbers were wrong and even faked and many died of treatment or weren't helped by it.

My caution worked for me.

But, there is the story of Christina Middlebrook, Seeing the Crab: A Memoir of Dying before I Do. A Jungian psychologist with MBC, she detailed her experience of the treatment in her book...then went on to live 17 more years!

http://theboobyblog.com/book-review-seeing-the-cra...

We honestly try to use statistics for our benefit, but each of us is left to walk our own path, with the sometimes company of one another.

I'm sure SEER posted those statistics in those graphs to reassure newly diagnosed breast cancer patients with early stage disease that they are safe. 2<% risk of dying in the next five years sounds great!

But we all know exceptions to the <2% statistic.

At bco, we spin the statistics the other way...if a treatment course has even a 2% chance of increasing survival, most of us want that chance.

It's human nature, I think. We want to live. We want our friends to live. We want solutions to problems. We want life to be fair. We want statistics to work for us, not against us. And we want to be the exception to the bad statistics and fall within the good statistics.

Feeling gentle with our human nature this morning, Stephanie

I rarely post these days, and I shouldn't be posting in the Stage IV forum, but I came upon this thread in the 'Active Threads' list and I'm confused by the confusion. It seems logical to me that staging is done the way that it is.

As others have said, yes, it is true that even if you have a recurrence, officially you remain at whatever Stage you were when first diagnosed. This means that someone initially diagnosed at Stage I will always be Stage I, although the description changes from being "Stage I" to being "Stage I with a localized (or regionalized or metastatic) recurrence". Of course everyone understands that "Stage I with a metastatic recurrence" is effectively the same as Stage IV, and for simplicity and ease of understanding, most patients (and their doctors) usually say that this person is now "Stage IV". But the official staging, "Stage I with metastatic recurrence", actually makes sense.

Here's why. Currently, the 5-year survival rate for Stage I is in the range of 99% (some sites say 98%; others say 100%). However the long-term survival rate for Stage I is in the range of 80%. But wait. Stage I is a localized breast cancer, with no nodal involvement (except possibly micromets to the nodes) and no metastasis. Everyone knows that breast cancer that is fully contained in the breast has a 100% survival rate. So how could the long-term survival rate for Stage I be 80%?

It's because some women who start out as Stage I have recurrences, and some of those recurrences are metastatic. Of course. What the 80% long-term survival rate stat for Stage I tells us is that approx. 20% of women initially diagnosed as Stage I will eventually develop a metastatic recurrence and succumb to the disease (but most not within the first 5 years, as the 5-year survival stat shows).

So think about it. If every Stage I woman who developed a metastatic recurrence was officially restaged to Stage IV, then the stats for these women would be listed in with the Stage IV stats rather than the Stage I stats. Moving these Stage I women with mets in with the original Stage IV women wouldn't have much if any effect on the Stage IV survival/mortality stats, but it would significantly change the Stage I stats. The long-term survival rate for Stage I would always be 100%, because it would only include Stage I women who never recurred or who had no more than a local recurrence. How meaningless, and inaccurate, is that?

Therefore the only way to know what percent of women from each Stage progress to develop metastatic disease is by continuing to track women within their original Stage even after a recurrence. This doesn't mean that women who develop metastatic recurrences are thought of any differently than they would be if they were officially called "Stage IV". It's not the Stage IV designation that's crucial to understanding the diagnosis; it's what it means, which is that someone has metastatic breast cancer. And that term is used whether one is Stage IV, or Stage I (or Stage II or Stage III) with a metastatic recurrence.

Now, because women aren't restaged at the time of recurrence, it means that there is no way to track the number of women living with metastatic disease. This needs to be addressed, but moving all women with metastatic disease into Stage IV isn't the answer, because this would create an even bigger information gap about what happens to women diagnosed at other Stages.

Ultimately, it doesn't matter what anyone chooses to call themselves. "Stage IV" is a good shorthand that most people understand. But for the medical and research communities, and for the government bodies responsible for tracking disease, it's important that the initial staging remain so that progression, survival and mortality can be tracked against the original stage. This is not just true of breast cancer, but all cancers. And it's not just a U.S. thing. Staging from the Canadian Cancer Sociey: "The initial stage of cancer does not change as the cancer progresses, nor if it comes back."

My apologies for intruding into the Stage IV forum, but I've seen this topic come up quite a few times over the years, and I thought this explanation might be helpful.