Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Beesie - great suggestion. I would still like to suggest rewording a bit further to truly reflect the questioning nature rather than an exclamatory statement - "Will 30% of early stage (I-IIIA) go on to metastasize?"
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I had posted here in hopes of all of you that know so much in hopes of some info as I really wasnt sure where to post to get answers. Most of you I know from other topics and I value all of your opinions and information.. I had posted a few days ago about My daughter getting called back for more pictures and Ultrasound. She had 3D Mammography They told her they saw nodular density so more pics were needed.
Update: She just went back and they took more pics and did US. Radiologist said it was a large cyst that was seen on US. She has tenderness there. They are going to fully aspirate and test. Then they want to repeat Mammo and US to be sure that this is what the mammo picked up and its nothing else. He said the cyst appears benign but they want to aspirate and test as he is not 100% sure that this is what the Mammo picked up. Are they being more cautious since I had BC... IDC?? Is this normal to do when finding a cyst?? I am nervous and I am sure she is as I know what she is going through.. anyone who can give me any thoughts or info would be greatly appreciated. Having Needle Aspiration on Friday.
Sorry again for posting in this section, but I do truly value all of you on this topics opinions!!!
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Nancy, I like it.
ThinkingPositive, your node-positive question is exactly why this discussion, while interesting and valuable and worth continuing, should be moved to a different forum. Good luck to your daughter - it sounds like her doctors are being careful, and that's a good thing, but it also sounds like it's most likely a harmless cyst, which would be a great thing. I've had many very large cysts over the years, and they were aspirated and the fluid checked - the doctor never had any concern, but if he was going to aspirate, he figured he might as well have the fluid checked. These days, since my diagnosis, my cysts have all been tiny; these have been left in place and monitored.
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Thinking, I, too have had cysts aspirated over the years. The fact that there is fluid is a good sign. If it was solid it would have to come out. They check the fluid to make sure something isn't hiding in the fluid. Keep us posted. A complex cysts has both fluid and solid characteristics by the way.
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Wobbly, BCO can be both tough for newbies and tough on newbies. But you eventually find a discussion board or two where you can help and be helped, and there you'll find a bunch of lovely, empathetic people who bond in time to become a caring little community. And you ignore some topics unless you're feeling like a bit of robust discussion. Men rarely post, but it may be as much due to their unwillingness to talk about their condition and feeling uncomfortable having a "women's disease" as much as getting little feedback from their posts. That's unfortunate, because a strong community of males here would add another dimension to the discussions. I do get the feeling that BCO management have very little interest in supporting men, which is too bad.
SusansGarden and Mods, great that you can change the title of this thread. I'd agree with Beesie's 30% of early stage (Stages I-IIIA) will go on to metastasize? but without any question mark. I think 48 pages of discussion have established this and it is not fair to newbies, or others, to pretend the case is otherwise.
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Okay I messaged the mods and suggested this title : "Questioning a statistic that says 30% of early stage (I-IIIA) go on to metastasize". Because that is still my original intent and doesn't sound as scary I suppose?
Looking at options quickly, I have no clue where it should be moved to though. Frankly I think there are too many categories to begin with.
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Actually, TravelText, what the 48 pages of discussion has established is that for early stage women diagnosed 10 or 20 or 30 years ago (because any long-term data available today would be based on what happened to these women), the 30% stat is likely pretty accurate. But to ChiSandy's point, we really have no idea what the rate of metastasis would be for those diagnosed early stage today.
So I think it's important that the question mark remain. I like Nancy's suggestion for the revised title.
Edited to add: Susan, your post came through as I was posting. Your title is good too.
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The mods had to shorten it to fit. Does it still sound like I'm questioning the statistic? Hmmm?
Should I have them change it to "Will 30% of early stage (1-3A) go on to metastasize?" ... (including the question mark) ?
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Yes, it needs the question mark. The way the Mods changed it just reads strangely.
And it should be (I-IIIA) not (1-3A). Any official staging documents I've ever read has cancer stages designated by Roman numerals.
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NEEDS the question mark... I don't like the new title.. it sounds just as scary. Also, it's not a 'stat' anymore... and the word stat lends credibility where none should be.
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So - "Will 30% of Early Stave (1-IIIA) go on to metastasize??"
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Okay, sent another change request.
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How's that, everyone?
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MUCH better!
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I like it better now. Scared me to death as a newbie and reading through so much to figure it out is hard. Only understand the statistics after watching this thread and posts for a while. Thanks to all who post. Many of us just read and don't comment often. 😀
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"No one keeps track of early stagers that go on to metastasize... they only track if they are still alive. I haven't seen anything yet that shows me otherwise, and I am dumbfounded that there is no record tracking that."
Ditto that. I too, have looked for accurate stats and they are nowhere to be found! That no one is keeping track of this (and it seems no one is) totally blows my mind. Like, shouldn't someone be doing this? Really? Unreal!
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NancyHB I am clearly node negative and high risk for recurrence…but stage IIB. My risk is higher than node negative stage 1. This means that my risk could be 40% while stage I could be 10% (averaging out to 20%)
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I second Beesie's good sense.... that an alternative forum is more appropriate.
Perhaps the concerned about recurrance ones... because that is what this is about... it is not about stage 1 breast cancer survival.
In terms of tracking metastasis ...that's what the long term studies such as that cited by Barred Owl are looking at ....distant disease free survival... not just 'being alive'
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Wobbly -- It is correct that there is no tracking of mets or stage IV if it comes back. Because I was initially reported as stage I (even though we found out that I had always been stage IV 2 months later) , I am most likely counted in the stage I stats which is really inappropriate. None of the major tracking agencies have any idea how many people are actually living with stage IV because they do not track this. An individual trial might track disease free progression, but there are many people who never do a trial.
I am not saying that to scare anyone b/c there could be more or less than we think......just that we truly need better tracking of all patients. I've lurked and read this thread for a long time, and I'm only posting because there has in the last week or so been a change.org petition that relates directly to this. Here is the link to it: https://www.change.org/p/john-t-burklow-start-counting-all-people-living-with-metastatic-breast-cancer
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kay....I will add that as developing nations begin doing an even better job of collecting data, and subsequently digitalising, we will then have a greater understanding of medicine.
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Thanks nbnotes for the link! That's exactly what I'm talking about and what bothers me!
For those that don't like to click on the link... here's the meat of the contents:
My name is Katherine O'Brien and I have metastatic breast cancer (MBC). This is the fatal form of the disease—it is treatable, but incurable. I am one of thousands of people living with Stage IV breast cancer. We don't know exactly how many women and men are living with MBC—and that's a problem we must address if we want to improve outcomes.
Clinicians and researchers are often quoted as saying there are 155,000 US people currently living with metastatic breast cancer. That's basically a guess. In 2016, we just don't know.
Won't you please help me—and my friends at theMetastatic Breast Cancer Alliance get definitive numbers? We need to start counting ALL people living with metastatic breast cancer! Please sign this petition NOW, via the box on the right.
When I was diagnosed with Stage IV breast cancer in 2009, I was shocked to learn that we currently have no reliable statistics on how many people are living with MBC. That's because our population-based cancer registries (e.g., SEER, NAACCR, state and local cancer registries) currently do not track metastatic recurrences. In 2016 we only have first diagnosis, initial treatment and mortality information.
MBC is the second leading cause of cancer death for women in this country--40,450 will die this year. Worldwide, MBC claims half a million lives annually. We need to be counted NOW, while we are still alive. We need people—especially those who influence research funding—to see us and to work to improve outcomes in the clinic TODAY.
I was Stage IV from the start—but most people aren't. According to SEER incidence figures, 6% of ALL invasive breast cancers are Stage IV at initial diagnosis, People like me are counted as Stage IV—because initial diagnosis is tracked. But most of my MBC friends had metastatic recurrences and will be counted ONLY after they have died.
Most people do NOT present with a metastatic diagnosis – they develop metastatic disease a few months or even many years after their diagnosis and treatment for early-stage breast cancer. We need SEER to track breast cancer recurrence—which is how the majority of people join the metastatic breast cancer ranks.
My friend Shirley was diagnosed with early-stage breast cancer in 1991. Her cancer came back 12 years later—she has been living with Stage IV breast cancer for the past 13 years. For statistical purposes, Shirley and other patients like her are tallied as successfully treated for early-stage breast cancer. Only upon their deaths will they be counted as metastatic breast cancer patients.
My friend Sarita was diagnosed with breast cancer in 2006. In 2013, Sarita learned her breast cancer had metastasized. Like Shirley, Sarita was NOT counted. In June 2016, Sarita died—and was, at last, counted.
Since 1973, the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) has been collecting population-based information on cancer cases and the initial course of treatment. SEER data plays a critical role in helping researchers and policy makers monitor cancer trends and determine what research is funded.
According to the Metastatic Breast Cancer Alliance's Landscape Analysis, which analyzed research grants from the major cancer research-funding agencies around the world, research funding for metastatic breast cancer accounts for only 7% of the total breast cancer research investment. Without an ACCURATE count of the number people currently living with Stage IV breast cancer, that number is unlikely to change.
The Metastatic Breast Cancer Alliance wants Congress to give SEER the funds and authority it needs to work with state and local population-based cancer registries to collect accurate statistics for those with metastatic breast cancer. Specifically, we want answers to the following questions:
1. How many people are alive today living with MBC?
2. How many early-stage breast cancer patients experience a recurrence? How many of these recurrences represent metastatic disease?
3. How have outcomes changed over time?
SEER was established 43 years ago—and for more than 43 years, people living with metastatic breast cancer have remained in the shadows, so discounted as essentially not to be counted at all—until they died. This has GOT to change.
We want SEER and all cancer registries to stop ignoring metastatic recurrences and start counting ALL people living with metastatic breast cancer. We can't remain uncounted and invisible.
If you ask me how many US people are living with metastatic breast cancer I would say "I don't know." If you ask me how many US people die from metastatic breast cancer every year, I would say "Far too many."
Please help me and all my Stage IV sisters and brothers stay in the picture! Thank you for signing and sharing this petition.
Katherine O'Brien
Metastatic Breast Cancer Patient
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That's great, lago.
I signed the petition. I also asked the mods to move the thread to: Forum: Not Diagnosed With a Recurrence or Metastases but Concerned
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"SEER was established 43 years ago—and for more than 43 years, people living with metastatic breast cancer have remained in the shadows, so discounted as essentially not to be counted at all—until they died. This has GOT to change."
My mother was initially diagnosed with stage III breast cancer. Less than 5 years later it metastasized to her bones and liver. She passed a few months after her stage IV diagnosis as a result of complications from chemo and BC (pneumonia and liver failure). Her death certificate lists "pneumonia" as the immediate cause of death, with breast cancer and liver failure as underlying causes. Was she ever counted as someone with Stage IV or even as someone who died due to BC? I don't know-but basing stats on causes of death as listed on death certificates seems to be a rather inaccurate way of keeping track of this.. Katherine is right, this has to change.
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According to SEER they do use "underlying" cause.
"A cancer mortality rate is the number of deaths, with cancer as the underlying cause of death, occurring in a specified population during a year."
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nbnotes, thank you for the link. I signed the petition. I am a statistics nerd, so this has bugged me for years.
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Kbeee- It has bugged me as well. Sort of my bc pet peeve. I'm doing great so it may sound morbid but I've told my parents make sure my cause is bc when I go so I'm counted right.
So, thanks to all who are signing the petition!
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Again I am posting here about my daughter...its the only topic where I have gotten any answers. She went to have the cyst aspirated today and the Radiologist came in and said, no, thats not the area that we were seeing on the Mamo...lets do another US and they did and found the spot that matched up to the mamo. Not the cyst. They don't know what it is. Called it maybe a lesion or nodule.. he did a biopsy of it and took 3 samples.. said if he had to guess he would say its benign... but has to do biopsy to be sure. Is it possible that this thing whatever it may be, can be benign.. She said she saw the area on the US and it was not a totally dark white spot, more of a milky white cloudy area that they were concerned about. I am sick to my stomach.. She will know in 3-5 days.. Thank you all for your support, thoughts and comments! Prayers needed !!
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Again I am posting here about my daughter...its the only topic where I have gotten any answers. She went to have the cyst aspirated today and the Radiologist came in and said, no, thats not the area that we were seeing on the Mamo...lets do another US and they did and found the spot that matched up to the mamo. Not the cyst. They don't know what it is. Called it maybe a lesion or nodule.. he did a biopsy of it and took 3 samples.. said if he had to guess he would say its benign... but has to do biopsy to be sure. Is it possible that this thing whatever it may be, can be benign.. She said she saw the area on the US and it was not a totally dark white spot, more of a milky white cloudy area that they were concerned about. I am sick to my stomach.. She will know in 3-5 days.. Thank you all for your support, thoughts and comments! Prayers needed !!
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It could still be benign. A biopsy is the only way to tell. Hoping for good news
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