Will 30% of Early Stage (1-IIIA) go on to metastasize??
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"My slower growing ER+ cancer was most likely to recur after the 5 year mark."
Ok this non-fact has to stop. We've been over this very topic before.
Some people are more visual, maybe a graph will help. There are tons of research out there and a quick search turned this up for me. You can see the pattern of recurrence in the graph below. This particular one compares triple negative with other subtypes. You can see that the curve is lower after the 5-year post-surgery for all subtypes compared to the first 5 years post-surgery.
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Barbe, I have triple negative cancer. If 1 in 8 women will develop breast cancer (12.5℅) and 15-20℅ of those have TNBC, I think I'm correct in saying my chances of getting TNBC were 2.5℅ or less. (Math is NOT my strong suit so perhaps my calculation is wrong.) I don't know if that makes it rare, but it's certainly not the most common presentation.
I didn't say the statistics should have importance for you in your unique circumstances. I said they did to me. I barely qualify as Stage II since my tumor was 2.2 cm and Stage II included 2-5 centimeters. I'll soon have to decide whether to have radiation. I want to be able to intelligently assess the likelihood of a regional recurrence with and without radiation and know whether it affects overall survival so I can balance that information against the radiation risks, like the pneumonitis (sp?) you've unfortunately experienced personally. In addition to the usual risks associated with left-side radiation, I must also consider my two incidents of cellulitis since tissue damage and necrosis are very possible with radiation. I'm not naive enough to think the statistics constitute a guarantee, but it's only logical to me to evaluate the best information available in formulating my treatment plan.
Lyn
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Stats are manipulated by people doing the research. Research is funded by corporations and drug companies. Stats are continually in flux.
I get that they may help you make decisions. I understand that they may comfort you. But there is so much fear out there.
When my oncologist at Dana Farber says to be cautious about them, I listen.
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"Stats are manipulated by people doing the research. Research is funded by corporations and drug companies. Stats are continually in flux."
Who do you believe then? Who does your oncologist at Dana Farber believe? I bet s/he is planning your treatment based on some statistics. And the vast majority of us, BCO members, would be dead if it weren't thanks to science's reliance on statistics.
I know we live in a post-truth world and everyone likes to believe what they like to believe. But I find this line of thinking disconcerting and dangerous.
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Excuse me. I believe I said MY slow growing ER+ breast cancer.......I have no intention of telling my previous oncologists that they were wrong (I have new ones as I moved). And guess what - they were right!!!!
We are ALL unique. That's kind of the point.
And VLH your odds of getting TN breast cancer remains at 15-20% as that was the stat for people who get breast cancer not the general public. No? If my Papillary cancer is less than 2% of all breast cancers and I take that into the general population it would be a might small number!!
What the heck is a hazard rate on that chart? How can they they dump all other breast cancers into one group? There are very aggressive breast cancers out there that would blow those TN risk hazards right out of the water! I've seen someone die within 3 months of diagnosis.
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Just checked that link above. It's over 9 years old. That's another thing readers have to watch our for - out-dated information.
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Barbe, I'd like to see any scholarly articles that separate your particular cancer from others. I do a lot of research and have difficulty finding studies that include details such as that (or mine, for that matter: synchronous bilateral invasive bc). From what I've found and from what I've been told by my oncologist and a second opinion oncologist from a top BC treatment center, recurrence risk is put into wider categories, and the ER+/PR+ category would include yours.
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Barbe, I posted that graph to demonstrate recurrence patterns not recurrence rates.
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Barbe, do you have more recent data that invalidates the information that ErenTo provided? If not, then you are not in a position to imply that the data may be wrong, simply because it's 9 year old data. Many older studies remain valid today. And even if a new study comes out with a different conclusion, it doesn't necessarily mean that the older data is wrong. You have to look into the details of the studies to determine which may be more accurate, and sometimes both may be valid because they are measuring something different or in a different way. In some cases a newer study might be small and quickly done, while an older study might present a much more reliable result. Of course some older studies are no longer valid, but it's simply not appropriate to assume that a stat or research study is no longer valid or relevant just because of the age of the study.
VLH, great explanation of how important stats and risk data can be in making treatment decisions.
As for all of the questioning of research and stats, and the comment that stats are manipulated by the people doing the research... Personally I don't give a rat's behind if someone chooses to believe stats or not. And I don't care if instead of using stats and risk assessments to make treatment decisions, someone chooses to use a ouija board. Go for it.
I do care
however when people try to delegitimize the medical and scientific
communities by making comments that put into question any and all
research. The simple fact is that everything we know about the efficacy of every single breast cancer treatment comes from medical research and the scientists who work within the medical community, many of them (but certainly not all) working for pharmaceutical or medical device companies. Every risk figure, every treatment guideline, every recommendation that assesses the benefits of a treatment vs. the risks from that treatment - it all comes from medical research. It's all based on stats.The average drug takes 12 years to get to market. For every 5000 drugs that are worked on in a lab, only 5 make it to market. Yeah, that sounds like an industry that is on the make and out to get us by manipulating the data. Not that it's never happened - there are unscrupulous people everywhere - but it's wrong to assume, and proclaim here, that it's the norm. It's most certainly not.
As I said in my earlier post, I don't think anyone should be second guessing their treatment decisions once the treatment is done. But the discussion here - and the constant bashing of stats and research - seems to be leading so many women to wonder if maybe they made the wrong decision... because they had bad data... because the medical community can't be trusted... because stats are just wrong... because a new theory has come out that provided different (but unproven and possibly completely wrong) information...
gardengypsy, when your oncologist at Dana Farber says to be cautious about research and stats, he/she's right. We've seen so many people over-react in this thread to a small lab study that manipulated cells and put those cells into mice. The paper presented a theory, and nothing more. Yet people here have reacted to that study as though it's the same as a 20 year NSABP clinical trial. That's why people need to be cautious... because many, if not most, people don't understand enough about research to be able to distinguish between a reliable meaningful research study with population based results, and small lab study that is preliminarily testing a new a theory.
The topic of this thread is interesting and important, but some of the discussion lately has been, in my opinion, highly irresponsible. Too many personal opinions being presented as facts. Too many personal examples being offered up without explaining that it's just a personal example, not applicable to all. Too much factually incorrect data being presented as fact. An open discussion is great, but let's please consider the impact of what we say before we say it, and try to see how people might react to something you say. I don't think any of us truly want to scare other breast cancer patients, or cause them to question their treatment. So think about that.
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And not all of the research is done by corporations. A substantial amount of it (in the U.S.) is conducted at/by research universities, sometimes independently and sometimes in collaboration with those evil corporations and drug companies; this research is funded primarily by the Federal government. Or, at least it has been. The research findings drive the work that is done on drug development.
For example, you might want to look at https://physics.cancer.gov/network/
This is an initiative of the National Cancer Institute, and includes almost all of the most prestigious cancer institutions in the United States.
Sorry about the off-topic post, but it's important to note the work of people who know a lot more about this than I do.
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evil corporations?? Seriously? Tell us you don't believe in the Big Pharms Conspiracy.....
Correct me if I'm wrong- and I know you will- but does grade not have something to do with growth speed?
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Given the message of her post, I took MmeJ's comment about "evil corporations" to be facetious. But maybe I was wrong.
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This is a 2016 article with great information on DFS for cancer type and nodal status just posted on the Research forum. Data is still dated as the earliest surveyed patients did not have AI or herceptin treatment. Also, Luminal B lumps HER2- with HER2+. Still for those with few or no nodes involved, it's reassuring information.
There are great charts, but I'm not able to paste these either from the pdf or html files for some reason. Maybe someone else will have more luck. Check out these charts:
Figure 2: Kaplan-Meier analysis of the disease-free survival (DFS) according to the pN stage (A) and breast cancer subtypes (B).
Figure 3: Kaplan-Meier analysis of the disease-free survival (DFS) according to the pN stage among patients with Luminal A (A), Luminal B (B), TNBC (C) and HER2 (D).
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Eren
ErenTo
This debate began when I let readers here know that the oncolgists at DF use much of their OWN treatment stats. Whenever I ask them about a particular treatment topic, they let me know whether or not their research supports the information.
That's very different than using the stats of everyone being treated throughout the country.
For instance, I inquired about the Cold Cap. They advised against it. The onc said that "their research does not support the use of the Cold Cap because questions were raised about whether or not the chemotherapy would reach the entire body if it were to be used."
Corporations fund the medical research in major universities. Big Pharma is here for the money, folks.
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Barbe,
Yes, I do believe that Big Pharma is in it for their own gain. That's why they lobby heavily against single payer health care. Capitalism and health care are a scary mix.
My partner is a research professor at one of the US' largest universities. Follow the money!
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Hmmm, yes, "Big Pharma" funds lots of studies, but the U.S. has a highly regulated drug approval process. "Big Pharma" can't just put out a drug and call it a cure for cancer if studies don't support that conclusion (regardless of who funds the studies).
Supplements, on the other hand, are hardly regulated at all. Yet many women swear by them because they are deemed "natural."
Look, if the FDA approves a drug for the treatment of X disease, there are studies that back that claim. Even after a drug has been approved for treatment, the FDA may order that drug removed from the market if dangerous side effects emerge from its usage.
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Mmeje
Since my health care provider is on that list, I will go with their medical advice, not random studies.
Thanks.
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Gardengypsy, I am getting confused. Are you trying to say big pharma is interested in falsifying BC stats to make them look worse than they are? Are you saying they are falsifying drugs benefits? What do Cold Caps have to do with the topic of this conversation? To my knowledge this is not a treatment and we are talking treatments here, right?
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gardengypsy, there aren't a lot of stats based on 'everyone being treated in the country'.
Yes, there is the very high level SEER data, but that is really just reporting data (number of women diagnosed, number of deaths, etc.) and has nothing to do with treatment plans or treatment recommendations.
The data that is used to determine treatment guidelines comes from hundreds of localized studies. Some studies, including most of the drug clinical trials, are larger and may be conducted in multiple centres (probably often including Dana Farber) but many studies are conducted at single institutions. People clearly are misunderstanding how breast cancer stats and risk determinations come to be. There is no master database of all breast cancer patients that blends everything and everyone together and comes out with one big high level number. There are no 'random' studies, just a lot of specific targeted studies that are consolidated to build a more complete picture.
When I was diagnosed I had to make the decision on whether or not to take Tamoxifen. I spent days working my way through research studies. My starting point was the RXList website. They list well over a dozen different studies on Tamoxifen, some large, some small, some done on women with mets, some done on women with DCIS, some done on node negative, some done on node positive, some done on high risk women, some done on men, etc.. In the end someone might say that overall, Tamoxifen reduces localized recurrence risk by 48%, but this figure is based on a compilation of many studies. And more specific information is available for women who want to know how it works on those who are node positive. Of course this level of detail is not available for all drugs and treatments, or for all the different types of breast cancer that we have, but this is a good example of how risk and treatment efficacy stats are developed. One study at a time.
Here is a list of early stage breast cancer clinical trials currently underway at Dana Farber. Many are in fact drug trials, no doubt sponsored by the manufacturer. The manufacturers use hospitals around the country (or the world) to recruit for and execute their trials. http://www.dana-farber.org/Research/Clinical-Trial... So the stats that you don't trust actually come from Dana Farber studies, and studies done at similar institutions.
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You know cold caps probably on the surface have nothing to do with this thread. But I would say there are medical oncologists out there that tell patients not to use them because of the risk of scalp mets. This chances of someone getting scalp mets is very very low. Some just refuse to deal with them say they don't work. They should tell that to the many BCO members who have had success or to those who permanently lose their hair on taxotere. These are the same doctors that miss quote or dont believe there is a risk of permanent hair loss. How about the people who flat out don't do chemo because they don't want to lose their hair.
In a way this thread has addressed risk factors and the real stats behind the treatments. I never knew cold caps were an option at all my oncologist never said a word to me as he recommended chemo.
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Beesie, yes, you were correct - I was being facetious.
gardengypsy, good for you that your treatment site is on that list, and that your partner is a research professor. I work at a large institution and have substantial involvement in procuring grants for research. I know where the money comes from. I hope you don't think that people don't benefit from subsequent clinical trials, regardless of the sources of funding.
But please remember that every institution is different in their treatment recommendations - oncs at the same cancer center or one across town can make different recommendations for the same patient! We see that on this board year after year.
Also (OT), I am and always have been a vocal advocate for single payer - it's the only fair (and decent) way.
Meow13, I asked about cold caps before chemo and heard the "no, scalp mets" thing. Well, that's almost nonsense and simply something that certain places just don't want to mess with. But what we're really saying is that for some of us, losing our hair is a BIG DEAL and traumatic, on top of the cancer dx. Vestiges of the patriarchy in medicine, IMO, that hand-waving. And it makes a private matter public and visible.
Sorry again about the OT.
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Speaking of cold caps I am not sure risk of scalp mets is the main reason why some institutions don't support it. I suspect this might have to do with organizational issues more than with anything else because they would have to provide the caps, freezers and whatever else is needed, train the nurses, the docs, get the caps (=new contracts), change billing, etc. That would be a rather significant change to chemo procedure to implement, so unless it is proven to have positive impact on treatments outcomes or pushed by patients advocates they would be reluctant to do it.
Btw, I am at MGH which is about two or three miles from Dana Farber and they don't do it either (I should say didn't do it three years ago when I was getting chemo, not sure about now.) When I asked I was told it would be torture to keep the thing on one's head during the long AC chemo. I had no objection whatsoever because I don't consider hair loss such a big issue if it is not permanent.
Good luck to all.
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I was treated at Sloan Kettering. They don't offer the cold caps but had no objections if I was to bring my own
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Studies were just presented this month at SABC on Cold Caps. Below is the link on BCO's Breaking News site to the summary.
http://www.breastcancer.org/research-news/scalp-co...
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Thanks minus and others, I would have done chemo if I thought it would benefit me. I have talked other people who have refused chemo because they couldn't bare the idea of losing their hair even if it was temporary. The wonderful institutions should recognise that and be open to help in anyway they can to make sure that people can get through the treatment. Emotionally and physically.
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On the cold caps... actually, larger institutions now have their own deep freeze cold cap machines which work much more effectively than the dry ice cold caps DIY we all know about. The top hospitals here in Denver now have them in their centers. Others will catch up. It's called DigniCap... Here's an article on it and why it's gaining ground. (no more logistics issues with buckets and dry ice and helpers changing out caps)
https://www.uchealth.org/today/news/a-device-to-cap-chemo-hair-loss0 -
Barbe.....and half of these events occur five years or later after diagnosis of the primary tumor.
Metastasis Dormancy in Estrogen Receptor-Positive Breast Cancer
Abstract
About 20-40% of breast cancer patients eventually develop recurrences in distant organs, which are often not detected until years to decades after the primary tumor diagnosis. This phenomenon is especially pronounced in ER+ breast cancer, suggesting that ER+ cancer cells may stay dormant for a protracted period of time, despite adjuvant therapies.
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This study illustrates why my MO wants me on anti-hormone therapy for at least 10 years if not longer. Scary stats in this article: 20-40% :-(. 30% was worrisome enough. CancerMath was much more reassuring.
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"and half of these events occur five years or later after diagnosis of the primary tumor."
True, and assuming that number is accurate, this half of recurrences don't happen over a 5-year period, they could happen anytime from year 6 to year 60+. So the hazard ratio per year decreases with every passing year beyond 5 years, and maybe it starts falling even beyond 2 years.
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note: the stats in that article relate to all bc, not just early stage.
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