Will 30% of Early Stage (1-IIIA) go on to metastasize??
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I'm guessing in my case the size of the tumour perhaps with the chemo delays I had is making me high risk for the first 5ish years then the ER+ being so high 95% is making me a lifer with her. I appreciate that because I'd rather be checked out than to be left completely on my own to be vigilant. It's not easy being d/c from any of my docs in Washington Hospital Healthcare System here in Fremont, CA. Anyone in the Bay Area, feel free to contact me and I'll give you a list of my docs who are 10 stars.
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so artista928.. Is it better to have a lower percentage of er+? I thought the higher the percentage the better it was for the hormonal drug to work on. Maybe I don't understand. None of them really explained anything to meall they did was kept telling me not to focus on that anddon't focus on that...
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It's hard to say TP. High ER+ and better chance meds will work. But if they don't then it can't be a good thing. Like stated somewhere above, you just don't know who is fine and who isn't until something shows up.
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NO, Barbe, I was not supporting your statement. I feel that I need to be crystal clear about this because you have posted so many times over the years that mortality rates for early stage cancers are the same (or even higher) than mortality rates for more advanced cancers, and that statement is absolutely wrong. So I don't want you, or anyone reading, to believe that my comment was in any way a support of what you said. It wasn't.
You said that "Being caught "early" makes no difference in mortality." I said that an early stage diagnosis "does give you better odds". That's the complete opposite of what you said. Where we do agree is that no diagnosis, no matter how early stage, is a guarantee of survival - but that's not news to anyone reading here. People out in the world, people with no experience with breast cancer, people who buy into the pink-washing, might not know that, but everyone here knows that. The more critical point for those reading this thread - particularly since this thread is in the Stage I forum - is that an early stage diagnosis has less risk of mortality than a more advanced diagnosis. Being caught "early" does in fact reduce the risk of mortality. It simply doesn't eliminate that risk.
As for early stage treatment, Barbe, you have frequently made comments to the effect that early stage women are often under-treated, or "not taken seriously enough". That too is not true and I wouldn't want the Stage I women reading this thread to start to worry that they've been under-treated because they are early stage. Yes, you were under-treated. As you said, you didn't have Tamoxifen, chemo or rads. With your diagnosis, that made no sense then, and it makes no sense now. Even back in 2008 it was clear that your treatment was lacking when measured against the treatment standards of the time, which clearly would have recommended both chemo and Tamoxifen. The fact that you didn't get these treatments was unusual and unique. That's the point I was trying to make in my earlier post, although I obviously was too subtle in my choice of words. So, for a number of unfortunate reasons, you were under-treated. But that fact that you were under-treated doesn't mean that all (or even most) early stage women are under-treated. If anything, most early stage women at the time you were diagnosed were probably over-treated, since the treatment guidelines pretty much suggested chemo followed by hormone therapy (if ER+) for anyone with a tumor that was 1cm or larger, or anyone with any nodal involvement (even just micromets). Today, many of these women would be able to pass on chemo thanks to the Oncotype test (which was available but very new and not often used back in 2008). With the Oncotype test, doctors today are more appropriately treating early stage women - but not under-treating them. That's why most Stage I women - but unfortunately not all - survive their diagnoses and go on to live full and long lives.
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Beesie, THANK YOU for continuing to clarify Barbe's treatment because I am noticing a disturbing pattern of Barbe coming on posts, doom and glooming all the stage 1s, using her story as the example.. but she NEVER tells anyone she didn't get the standard treatment and she NEVER clarifies that she slipped through the cracks and if she had the appropriate treatment she may very well have not gone stage 4.
Barbe, PLEASE STOP using your story as an example of what Stage 1 people can expect. Can you recognize your case is NOT THE NORM? and you didn't have any of the treatment protocols you should have?0 -
Limey, obviously I DID tell my treatment story or Bessie wouldn't remember it so well! Also, I am hiding nothing on my signature line about treatment and/or lack of it! So what is your point really? You don't want to hear reality??? No one is "the norm" as most of us have figured out. This Forum isn't about rainbows and unicorns.
If I'd had more aggressive treatment 8 years ago I'd probably be saying "hey, I had a good run." For just having had surgery I can most definitely say "hey, I had a good run!" My treatment now starts off so much more gently with Arimidex because I didn't have it or Tamoxifen 8 years ago. If I had, I'd have to be on an IV chemo now. Lucky for me , eh? Think about that one.
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And just to add, how many posters above have said that we are sometimes "cured" with just surgery. So are some people are throwing WAY too much unnecessary treatments at their bodies? Do we know which treatment will work? Of course not! We just all make the best decisions we can with the information we have.
The original poster had a good question and it's been a lively conversation. It's certainly NOT a black and white issue as some people think it is.
And yes I tell my story of becoming stage IV as that was the topic of his thread. How many of you beating my opinion up are stage IV?
We all have the right to tell our stories and none is more true than the other.
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I agree. There is no norm. Norm implies we know this and that will work and you can gage against it. We know nothing at whatever stage and whatever we do or don't do. Gotta be careful with stats as they are not the tell all esp when it comes to cancer where there is no rhyme or reason nor a cure.
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Just chiming in with some more "doom & gloom", however I don't look at it that way. Just the facts. I was Stage -0- with DCIS. I had a double mastectomy due to size & grade. They took both nipples. They got wonderfully clear margins. I was ER/PR negative. I had serial node biopsies - 3 nodes on each side. They were negative. Done & dusted!!! Less than two years later I had a recurrence lump up under my collar bone. Recurrence without breasts - not mets. Oops. There was obviously a micro cell that escaped. Except the recurrence was IDC.
My original treatment was state of the art and a tumor board of 8 docs agreed with the plan, so I was NOT under treated. Before the original surgery I met with a BS, an MO, and a PS for reconstruction. I had two second opinions. Hey - it happens folks. Of course we want to believe we are the ones who will not have to face this beast again. But I would NEVER use the word cured. So maybe something escaped after this second treatment of ALND surgery, two different chemo regimes and rads. I sure hope not and I'm going on with my life & NED as of my June PET/CT and vigilant. There's no magic answer no matter what stats we read so I don't use the word cured.
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After joining this forum, I was quite shocked to see women initially dx with stage 1, grade 1 less aggressive bc, who were adequately treated yet still progressed to mbc. Its an eye-opener because pink-washing has done a good job leading us to believe early stage is curable. Yes, new treatments have improved the odds, but not for everyone. Its still a crap shoot. Statistics won't help us determine who will progress. Granted a stage 1 may be a better prognosis than a stage 3, but currently, there are many stage 1 who will potentially progress (unless treatments improve).
Let's look at some numbers. In 2016 in the U.S.alone, 246,660 women are expected to be dx with invasive bc. I don't know how many of them will be stage one, but let's guess about 1/4 or 60,000. I have no idea how many of those will progress to mbc, but let's give them all a really great prognosis and say 99% are cured, only 1% gets mbc. One is a tiny number, right? Except 1% of 60,000 is 600! That's a big number to me.
But life is filled with uncertainties, so you can't let the "maybes" cause so much fear that you can't enjoy today. What it does mean is that we need to remain vigilant, educated, and be our own advocates when something seems not right.
I recently met a women who was dx DCIS five years ago. She completed her treatment and was considering foregoing any more mammograms because she was told she was "cured". YIKES! If people believe something is curable they will become less vigilant because they think "If I get it they will cure it." I think the pinkwashing needs to stop and the general public needs to understand the facts.
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^^^^ Great post. That's my fear as I've said for stage I everything best case possible. We'll see crap posted about this in Oct, breast cancer awareness month..
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Stats, with regards to bc, are not a matter of what one believes or not. They are simply a record of what has gone on within the parameters of what they have recorded. They are not predictive of what will happen to any given individual. I think some of us become disillusioned about stats because we view them as predictive of our individual situations. They are, for the most part, retrospective and should never be taken as a predictive tool. They can illuminate trends, give you some odds and perhaps provide tools for decision making, but they are never a guarantee.
I have posted this before, but if you look at the stats on port placement and lung puncture, you'll see that this happens about 1% of the time. What this tells us is that based on past port placements, 1% of patients will experiencea punctured lung. So, do you go into port placement surgery assuming it won't happen to you or that it's a crapshoot? No, if you understand retrospective stats, you understand that the risk is very small and chances are excellent that it won't happen to you, but that doesn't mean it will not happen to you. Additionally, if it does happen to you, it doesn't mean your chance of lung puncture was either 50/50 (it either will or it won't) or 100% because it did happen. If your lung was punctured, your chance of this happening was still only 1%. Your individual reality was that it did happen and you were, unfortunately, that 1%. So, if you understand what stats tell us, and what they don't, you won't feel disillusioned or lied to. BTW, I was one of the 1% who got a punctured lung after port placement. As unfortunate as it was, that stat is still valid and I never regard what happened to me as anything more than rotten luck. I would never hold it up as a cautionary tale for those considering a port!
Ladies, please understand what stats are telling us and know that they are not predictive for individuals, so don't be mad at the stats .
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My biopsy in 2012 described ductal carcinoma cells invading the vascular and lymphatic systems. I remember this as if I was handed a drawing I never saw. A tumor sized 1.9 cm. Biopsy of sentinel and axillary nodes were negative. Grade 3 cell type. Regardless of the treatment I was recommended and followed, nothing convinces me that all those escape artists were taken down. I believe it is just a matter of time. So I practice mindfulness to make each moment a gift. And send every cell in my body loving kindness.
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Lisey, thank you!
exbrxgrl, great post!
Barbe, I remember your story so well because I was around at the time you were diagnosed and I was one of the many women on the board who worried that you were being under-treated and who encouraged you to see an MO. I remember your story so well precisely because it was so unusual. Your case is one of 3 or 4 situations that I will always remember, and where I always worried that one day the other shoe was going to drop. I have to agree with Lisey that when you post these days and mention your progression to Stage IV, you often neglect to mention that you were under-treated. For you, that's water under the bridge; I understand that. But when you post in the Stage I forum and present your case as a cautionary tale to women who are Stage I, that's a critically important omission.
I do find it interesting that a lot of the recent discussion here has been fueled by comments made by people who are Stage III. This is the Stage I forum. As someone with an early Stage I diagnosis, I know that I have no idea how someone with Stage III breast cancer feels and views her (or his) future and the risk of progression. Similarly, I don't see how someone who is Stage III can tell women who are Stage I how they should feel about their diagnoses. If someone who is Stage I chooses to believe that she is cured, how can you tell her that she is wrong? It's fair to warn her about the uncertainty, and tell her to always remain vigilant, but how can you tell someone what is right, or wrong, to think?
That said, to some of the recent discussion, let me repeat a point I made earlier: I think there is a huge difference between what a patient chooses to believe for herself and how she chooses to move forward in life, and what a doctor tells a patient. Since we can never know for sure who among us is cured and who will have a recurrence or develop mets, of course any doctor who pronounces to a patient that she is "cured" is an irresponsible idiot. For early stage patients, I am fine however if a doctor says something like "I hope and believe that your treatments were effective and that you have been cured, but since there is no way to know this for sure, it's important that you always remain diligent, come in for all your tests and call should you ever experience any unusual pains or develop any lumps."
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i am not stage 1...but barely (2.0 cm tumor no nodes right at the cutoff between 1-2) I think we have all stages 1-3 chimming in because we are all considered early stage and possibly curable (I know the stats vary widely between stages) and as such we are all debating the notion of "cure" the stats of progression etc which we are ALL concerned about.
I'm just gonna say it...I sometimes feel like some discussions get in to the "my cancer is better than yours" territory - do I envy a grade 1 stage 1 her2 neg cancer ? you betcha but those are the cards I was dealt and I have to deal with them. Many women are diagnosed at later stages through no fault of their own (screening that missed tumors/doctors that don't take them seriously etc) and we certainly cant control how aggressive our cancer turns out to be.
I have a good friend who was just diagnosed - triple negative stage 1 or 2 (I'm guessing by what she told me) doctors have used CURE many times during her treatment - she believes this and is completely oblivious to the realities of recurrence. Who am I to burst her bubble? I wish I was in that bubble with her! as for remaining vigilant - I don't get that either. I get that for a local recurrence there is a possibility of a cure but if you have mets then we have been told time and time again that when you catch them is irrelevant to survival. That's a different debate altogether!
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rozem, I get what you say about being told it does't matter when stage iv is discovered. That's always confused me. If you have a tumour growing in an organ like lung or liver, it would be best to "nip it in the bud", wouldn't it? Bone mets change the chemistry of your body and need to be treated just as urgently as an organ met. So I never understood that logic.
I think what they are saying is that once you are stage iv you will always be stage iv, so THAT isn't the panic.
As for other stages posting here, I go to the "Active Threads" list and jump on a discussion that interests me. Except for stage iv threads, any thread is open to the general public. Why censor who responds to posts, as all input makes it interesting? Also, though technically I'm a stage IV, I remain a stage I for the medical field to keep track of what stages recur. So there is a blur between stages anyway....
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Thank you ErenTo for the article.
It's a tough business figuring out what the nature of the forum is. It's not just a support group (because users do seek "truth" here) but it's not just a place for facts either (because it's not continuing education for healthcare providers).
I searched information here but also read journal articles just in case. So far so good.
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Yes I am stage III. I look at thread titles that interest me not paying attention to stage, except the stage IV forum. My cousin is in the boat of being cured stage I and has wiped her mind from it. So I do have an interest in this thought of cured in addition to caring about other women battling bc.
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I am another stage 3'er who weighed in on this thread. Like Artista, I notice the topics and don't always notice the forum. I certainly didn't mean to alarm anyone and the risk of recurrence/advancement is definitely much lower in stage 1 than in stage 3.
However, whether someone is stage 0, 1, 2 or 3, I do have a real problem with the idea of "cure" in BC. I also have a real problem with the idea of it being "cured" once you are 5 years from DX. It simply does not hold in BC. The relative survival is a flat curve, as far as I know. I have had to explain this to oncologists even. I grant you that they were residents, but still.
That said, all a flat line on relative survival means is that the risk you had after treatment remains. If you are stage 1 or 0, that risk is very low at any point in the continuum, and your risk of dying of something entirely different is likely much higher even if you are relatively young.
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I don't have a problem with later stage people posting on this board. I DO have an issue with mis-information and people who use fear-tactics for newbies. For the record. I stepped on a landmine left by Barbe when I first arrived here. She isn't clear in any of her posts that she did NOT follow standard protocol, so when she states 'look at what happened me.. see it can happen to you too!" it scared the shit out of me!
And it was the wrong thing to say to someone just starting out on this journey as a stage 1A. Now that I've seen multiple posts by Beesie having to clean up the landmines and clarify that Barbe's experience was not following standard treatment, I can put her out of my internal statistics calculations.. Just like they throw out people who don't follow the rules in studies.
I was so shaken up by Barbe's doomy posts, I even created a whole new thread regarding stage 1As going to Stage 4s... Luckily, many others helped me understand the odds and statistics and showcasing how rare that truly is. I'm grateful for their scientific posts and for those who don't try to 'scare' newbies with 'odds mean nothing' comments. ODDS mean a ton to a stage 1A and since this a board we frequent, the later stages should understand and respect that.0 -
Lisey, odds matter to us all, even those of us with fairly shitty odds. Also, before we get all bent about under-treatment, it must be kept in mind that over-treatment carries risks of its own. I do not know the stats, but I suspect that my mortality risk from after effects of the extensive treatment I had may be similar to the mortality risk from BC for a stage 0 or stage 1 patient.
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Lisey, I didn't miss much. I had a double mastectomy and wouldn't have been given chemo due to my slow growing ER+ cancer. Chemo only works on fast growing cells so it would have been a waste for me. That's what a lot of the testing is doing now - checking to make sure you NEED chemo and aren't just getting it because everyone else did.
There was no need for radiation at the time either and the only thing they could have added was Tamoxifen. But, as I stated earlier, if I'd had Tamoxifen for 5 years (the protocol 8 years ago) then I wouldn't be able to use Arimidex now! I'm 8 years out so would have finished my Tamoxifen. Now I can just use Arimidex instead of a harsher chemo.
I think you are exaggerating my posts. I didn't NOT follow protocol, I wasn't given the option of Tamoxifen until, as my onco finally said "it's too late now". Saying I didn't "follow the rules" is just ignorant. So my experience shook YOU up, can you imagine what it did to ME?
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Barbe, I am pretty sure an AI can be used after tamox, even if the tamox failed.
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Yes, Momine is correct. This is what I'm saying about mis-information...
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I still think it is absolutely crazy that no one really keeps track of how many people progress from early stage to stage IV BC. The numbers are just not there. I've looked and looked and time and again have found no one officially keeps track of this! Crazy!
However, I do believe some people are cured of BC by surgery or surgery and rads because (A) my OC told me so. She says someone with my stats has an 80% chance of being cured even without adjuvant hormonal therapy and that hormonal therapy, because it stops about 1/2 of expected recurrences, hormonal therapy boosts that to 90% cured. Of course the big problem is they don't know who is cured, thus many of us are over treated as someone else wrote and almost all of us worry about it to some degree and
(b) because I know people who have been cured of BC. My husband's aunt was diagnosed w BC in her 40s, had a mastectomy and is now in her 90s. I'd say she was cured. It happens and according to my OC and almost all available stats, it happens more often than not. Most people diagnosed with early stage BC will NOT have a recurrence ever-which sounds like cured to me. Whether the true rate is 70 or 80 or 99%, the odds are in our favor.
As far as our individual odds go, I think our own doctors are in the best position to tell us this, since recurrence rates are not totally dependent upon stage. In fact, stage has been shown to be somewhat less important as the importance of the biology of BC tumors has become better known. Everyone with stage 1 or stage 2 does not have the same risk of recurrence.
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Ooops, I was post-menopausal. Would I have been put on Arimidex instead of Tamoxifen 8 years ago???
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Also, mine was Grade 1 and chemo was on the table if oncotype warranted it. If it had reached my nodes I would have done it as well
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Good point about oncotype Kathy! Did everyone "play by the rules" and continue to take Tamoxifen with low scores? Does everyone realize that the oncotype testing is based on the patient taking at least 5 years of Tamoxifen? So if you avoided chemo due to a low score but couldn't handle Tamoxifen, then your score would be totally different.
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Barbe, I was listening to a podcast in which two oncologists were discussing some of their patients' cases (if anyone is interested the podcast is called Breast Cancer Update). I don't remember the name of the MO or the conversation word by word. But here is a summary of two cases that one of them discussed:
Case 1: 30 year-old woman is diagnosed with early stage BC around 1990. She received conventional treatment for the time, however back then Tamoxifen wasn't standard of care for pre-menopausal women so she went on her merry way. She had a metastatic recurrence in 1999 and was put on an AI after ovarian removal/suppression and was still NED at the time of this podcast (2015)
Case 2: A 40something woman is diagnosed with HER2+ disease in early 2000s and Herceptin was not available to her at the time and after standard of care treatment she goes on her way as well. 2-3 years later she had metastatic recurrence and then Herceptin was available to her. She is still NED and on Herceptin.
MO's conclusion: had these treatments been available to these two women at the time of their original diagnoses, they probably would have never had a recurrence and would have gone into the successful treatment statistics and we would have never heard about them. So saying that you saved these drugs for now is not a very valid argument, you may not even needed them had you have received the appropriate treatment at the time of your initial diagnosis.
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Eren, that was my point when I said the only thing I missed was being offered Tamoxifen. If I'd had Tamoxifen or another AI 8 years ago, perhaps I wouldn't be stage IV now. I own that. And I've said it a couple times in this thread alone.
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