Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Throwing in my 2 cents and opinion, I agree with Traveltext. I'm a 25 year survivor of what would be a stage 2, and a 1 year from dx for stage 3b. Just from my personal experience, I wish I'd had a double mastectomy 25 years ago, chemo and rads. Would I be facing what I did this past year? Who knows, but I wish I had. First time was lumpectomy, and tamoxifen.
I also agree, these boards are not for the faint of heart. I've learned that over the past year as well.
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Ah ha - and here I am!!! BMX for DCIS. Took the nipples & all to be safe. Large clean margins. 2 SLN on each side - all clear. No further tx. Two years later - "recurrence" up by my collar bone & ALND. Neoadjuvent & adjuvent chemo & rads. And now I'm a Stage IIIc, but I still read this thread. So - I love the article that Traveltext posted. Was it 'micro cells' that escaped during my original surgery as my docs thought? Or were they cells in hiding that were not active or seen? How interesting.
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MinusTwo..were you advised to take tamoxifen? It seems that the idea of these early micrometastasis is why our doctors make us do the antihormonals even for early stagers. At least that is what my oncologist said
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Wow. I guess I'm no longer feeling as comfy knowing my mom is DCIS now. Good to be informed.
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All I have I have to say is don't buy trouble. I made my decision 5 years ago on how to proceed with treatment and I never did looked back. To say you should have done something different is moot.
Keep informed and move on.
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I think it is important to remember that cancer can likely metastasize through a variety of mechanisms. Statistically, stage 1, node negative have less chance of metastasis, but the risk is still there, and real, and the article be Traveltext gives one potential explanation of why. There are so many nuances with cancer; that's why there's not one silver bullet cure all
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Kathy: - No anti-hormomals for me. I was ER/PR negative both times. The only positive thing is HER2+ so could have Herceptin & Perjeta.
Artista - I agree that you shouldn't anticipate trouble. Many women with DCIS don't have a recurrence or mets.
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MinusTwo, I agree with your comment to Artista. I would add to it by saying that the long-term survival rate for women initially diagnosed with DCIS is around 99%. This means that of all women diagnosed with Stage 0 DCIS, only ~1% have an invasive recurrence and subsequently develop mets. A greater percentage do have a localized recurrence (I think it averages about 12%) but the vast majority of those recurrences are either still DCIS or are early stage invasive cancer that is successfully treated.
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Beesie - I keep meaning to tell you - I really like the quote in your tag line. Just what we're talking about.
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I think the article posted above said the death rate for DCIS was 2-3% of diagnosed.
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Yeah, and you also have to take into account that recurrences are not well tracked at all, especially when you look beyond the first five or ten years. I can see the 5-year recurrence rate for DCIS being 1% of less but the death rate over a muchlonger period of time being more like 2-3%.
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I deleted my earlier post since I clearly don't know what I'm talking about when it comes to DCIS. (Or maybe it was because I don't have any interest in yet another back and forth debate about the complexities of the data and the differences between various studies.)
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"I deleted my earlier post since I clearly don't know what I'm talking about when it comes to DCIS."
That makes it easier for newbies and other folk who want to catch up on the posts in this thread, since there are now only 1,491 posts to read
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"I've always said that lower stages get more mets than stage 3 due to being under-treated!"
This is absolutely not true, lower stages have a far lower rate of metastases.
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news just out today https://www.statnews.com/2016/12/14/cancer-cells-s...
Cancer cells are able to spread from a nascent tumor much earlier than scientists long thought and are more adept than later emigrants at forming potentially lethal metastases at distant sites such as the brain and bones, researchers reported in two studies published Wednesday.
The discovery offers the first molecular explanation of how that early spread occurs, hinting at why early detection and treatment often fail to prevent cancer deaths: "Early" is still too late.
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Once again, I will say this study terrifies me, and confuses me since the statistics show that most people whose tumors are found at an early stage end up surviving this disease.
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Kathy, the article makes it sound like all breast tumors have the ability to metastasize and that's not what has been found in prior studies. I attended the SABCS and came back very much convinced that metastases largely depends on the mutations that happen in the individual tumor. I have two of the most common mutations, found through Foundation One testing of the brain mets tumors. But I believe oncotype tests for a lot of the more deadly mutations, so a low score is a pretty good indicator that you hada not nasty tumor. Maybe one that never would've caused a problem if it had been left alone. But since we don't know that, that's why you're on hormonal therapy. Remember hormonals are systemic. They just work differently than chemo. Every time you take your pill, you are slowly starving whatever cells may have escaped.
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Kathy this is a disease that no one understands. That's why instead of dollars going to education we'd like it to go to research. Unfortunately the general public thinks breast cancer is pretty pink boas and decorated bras. It's deadly.
My cancer was found very early and yet now I'm a stage IV. I didn't get chemo or rads or even Tamoxifen offered (yes I'm an anomaly) because it was caught so early and fully taken out with the mastectomy. Yet there can be stage 3 gals with huge tumours that never move on to stage IV. It's truly a crap shoot. Every time
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barbe, you said "I've always said that lower stages get more mets than stage 3 due to being under-treated!"
Except the stats don't bear that out. I am stage 3, 3B actually, which means that strictly speaking I am not even considered early stage. I had every treatment they could throw at it and then some, at my insistence (ooph).
All the same, my chances of making it longterm are really not that great. At my 5-yr appointment, my doctor was a little too delighted that I was still alive and apparently NED, as best we know. Clearly, he did not expect that.
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KathyL, no, you should not have insisted on chemo. The chemo, in your case, would have had a greater chance of harming than helping you.
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Yes, Barbe, that is what it said:
"I think the article posted above said the death rate for DCIS was 2-3% of diagnosed."I understand that this is an unsettling statistic for those who have been treated for DCIS, but if you compare it to the death rate for stage 3 BC, there is really no way to equalize those two.
Yes, any stage BC, even stage 0, can potentially metastasize, but the risk of metastasis does increase, statistically, with stage.
These are limited stats, from a small area in the UK, covering 2002-2006, but it gives some indication of the scale:
Stage 1
Around all women (around 99%) will survive their cancer for 5 years or more after diagnosis.
Stage 2
Almost 90 out of of 100 women (almost 90%) will survive their cancer for 5 years or more after diagnosis.
Stage 3
Almost 60 out of 100 women (almost 60%) will survive their cancer for 5 years or more after diagnosis.
Stage 4
15 out of 100 women (15%) will survive their cancer for 5 years or more after they are diagnosed. The cancer is not curable at this point, but may be controlled with treatment for some years.
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Momine, you crack me up. Nothing like your oncologist doing the happy dance that you're still alive and NED at five years.
Mine just looked pleased. In a purely professional manner.
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Interesting article traveltext.
"A key finding from this second paper is that in the mouse models, 80% of metastasis originated from the early spread cells and not from the large tumors. In fact, the Klein group identified a mechanism by which spread is more efficient in early lesions than in large tumors.
In both studies, investigators found that early cancer cell spread is an extension of the normal process of creating a branching tree of breast milk ducts in females."
It seems to explain why some metastasis for early stagers happens "surprisingly" and reinforces the Crapshoot Theory for breast cancer and why those cells can be so damn sneaky. But I don't think it means everyone should blindly "throw the kitchen sink" at early cancer. Because that's not a guarantee either.
I think we just don't know enough about breast cancer and have a ways to go before we do. In the mean time, we make the best decisions we can with the information we have at the time. Educate yourself, be your own advocate, try not to let fear get the best of you and go live your life!
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I definitely think stage matters, but I feel like stage is a manifestation of a tumor's individual mutations and characteristics than not finding it early enough. I.e. nastier tumors are more likely to spread to the lymph node when small or between mammograms or whatever. Which is how you can have women with the same size tumor but different levels of spread. Does that make sense? Anyway, the current research seems to be backing that up and the sooner I can stop explaining to people that no it wasn't a failure of early detection, i just happened to have an aggressive, mutated cancer, the happier I'll be
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barbe1958 said: "I've always said that lower stages get more mets than stage 3 due to being under-treated!"
Except that what you've been saying isn't correct. Clearly, your early stage cancer was undertreated because, unfortunately, you fell through the cracks. However, early stage patients as a whole are not undertreated--they tend to be OVER treated, which is precisely why tests such as Oncotype, etc have become commonplace...to spare patients the harsher treatments if they don't appear to need them. You were undertreated, but your experience is unusual and can not be used to describe the experience had by the majority of early stage patients.
barbe, you also said: "I didn't get chemo or rads or even Tamoxifen offered (yes I'm an anomaly) because it was caught so early and fully taken out with the mastectomy."
As has been discussed earlier in this thread, the little treatment you were offered wasn't in line with the treatment guidelines at the time, so you were not even given standard of care. Heck, even by today's standards, you were undertreated, but your unique situation is one in which it certainly sounds like a medical mistake was made. That's a whole different situation than your MO assessing your case and deeming that you only needed surgery.0 -
sbelizabeth, it was actually my surgeon, who is my lead doc (a little unusual, but hey!). He is very dignified and formal, but we are also sort of friends at this point. He has made quite clear that my prognosis is iffy. But he was visibly startled and broke out in a huge smile, when he saw that all appeared to be ok, and then couldn't stop saying how delighted he was.
My onc, OTOH, is an eternal optimist. He actually tried to tell me I was cured at one point, and received an earful in return
Poor man, he takes abuse gracefully.0 -
Kathy: No, you should not second guess and you absolutely should not have tried to insist on chemo despite a low Oncotype. While I maintain that every person diagnosed with non-metastatic breast cancer should never let our guards down, we all need to realize that this "disease" is not just one disease--it's many that are grouped together under the term breast cancer. I would never tell you that you have nothing to worry about; however, in terms of the many incarnations of this beast, your pathology is among one of the best for an invasive breast cancer. Does that mean you'll never have it rear its ugly head again...of course not, no one knows if they're safe. But that also doesn't mean that any study, paper, or statistic in which your more favorable pathology is included along with others who have high risk, means that you're doomed.
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Momine I knew the fact that you consider yourself late stage meant you didn't fall within the early stages I mentioned. My years here on the boards have seen WAY more early stages become stage IV. Maybe it's just because there are more early stages?
I also did mention that my situation was an anomaly which means not normal but was acceptable at the time. The Oncotype testing was not available in Canada in 2008 so there was no way to judge risk at the time.
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I realize that Ocotype wasn't a standard test at the time and that's been discussed in this thread with regard to your earlier diagnosis, but that doesn't mean that there was no standard of care or way to evaluate your risk. As Beesie pointed out, even the node involvement you had meant a diagnosis of stage II and that was an indicator of chemotherapy at that time. There was usage of hormone receptor testing and they were able to tell you that you were ER+/PR+ so anti-hormonals were indicated. Of course, all of that was purely the fault of your treatment team; however, my point and the point of several others is it's wrong to take your example as a unique situation in which there was a failure of the physician and apply it to all early-stage diagnoses.
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Most early stages stop by here briefly during their surgery and immediate treatments, and then they never look back. Those with recurrences make their way back, so this site cannot be used to gauge numbers as far as recurrences, etc. Statisticslly, early stages have less rates of recurrence, but there will always be some (like Barbeand I) who fall on the wrong side of the statistics.
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