Will 30% of Early Stage (1-IIIA) go on to metastasize??
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I'm not applying MY situation as covering all. Which is why I said I was an anomaly. I've been pretty upfront about that.
What I'm basing it on is my years of watching the Just Diagnosed with a Recurrence thread. And also the fact that early stages covers stage 0 to 3 (but not 3A or
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barbe1958 said: "I've always said that lower stages get more mets than stage 3 due to being under-treated!"
By saying the above pasted quote, you are applying your situation to the rest of early stage patients. You were under treated, but MOST early stage ARE NOT.0 -
I get being an anomaly--I am as well--however, I make sure to differentiate my experience from that of all other early stage patients, young women, etc.
Your above quote about how you were treated with surgery only because it was caught early is not the whole picture. You were treated with surgery only because they dropped the ball
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It's basic math.
The SEER database doesn't track diagnosis by stage, but tracks "localized" (node negative) vs. "regional" (node positive and/or regional spread) vs. "distant" (metastasis). Their latest report indicates that 61% of women are diagnosed with localized BC, 31% with regionalized BC, and 6% with mets ( and 2% unknown).
Obviously the 61% are all early stage. The 31% includes both early stage (node-positive Stage II plus Stage IIIA) and advanced stage (Stages IIIB and IIIC). Let's guess then that the 31% is 16% early stage and 15% advanced stage. This would therefore mean that 77% of women are diagnosed with early stage BC (61% + 16%). I recall reading somewhere that 80% of women are diagnosed early stage, so this is pretty consistent with that.
Let's turn these percents into numbers of women. If we have 1,000 women who come here diagnosed with breast cancer, this means that 770 will be early stage, 150 will be advanced stage, and 60 will have been diagnosed with de nova Stage IV breast cancer. (And 20 of the women don't tell us their stage).
So.... if 30% of the 770 early stage women eventually develop mets (assuming that the premise of this thread is correct; I believe from my reading/research that it pretty much is), that's 231 women. That's already significantly more than the total number of women who came here with an advanced stage diagnosis (150). Even if every advanced stage woman were to develop mets (and thankfully that is not the case), someone observing this board would see many more early stage women with mets than advanced stage women.
As many have already posted, early stage women are less likely to develop mets than advanced stage women. Despite this, we will always see more early stage women with mets than advanced stage women with mets. It's not because early stage women are under-treated or because early stage diagnoses are not taken seriously; there is nothing to suggest that this is true. Rather, it's simply because there are so many early stage women. It's basic math.
A discussion about early stage women developing mets is scary and not for the faint of heart, but it helps to keep the facts straight.
Edited for typos only (that's what I get for posting from my iPad).
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IMO, all people pre Stage IV should note the following factors when assessing their chances of recurrence:
• Age of diagnosis
• Gender
• General health
• Stage/Grade
• Hereditary predispositions
• Quality and type of surgery
• Appropriateness of chemo prescription
• Quality of radiation therapy
• Anti-hormonal usage and time used
• Precautionary prophylactic actions
• Quality of medical team
• Luck
• ChanceCertainly add mental health, level of resilience, relationship status, level of support, diet, fitness levels.
Likely I've forgotten something.
No algorithm invented can take all these into account, that's why "crap shoot" is so commonly used to describe our chances with this disease.
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Well, I am going to chime in here. The onco docs threw everything they could at me and I am glad. Even though they did a OncoDX test when I was HERS2+ which will never give an accurate reading only on HERS2-. Still rather take it all regardless. I too have seen & read about too many women who elected (or begged and yes I admit I would have jumped at it if offered) for a lumpectomy only to experience a reoccurrence. The choice to have the opposite breast removed plus a total hysterectomy was mine alone. Having said that, I tell people that BC is not one size fits all. Most people don't realize the combinations involved or the differences in treatments given.
We need to accept that we all are different & continue to support each other.
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I have often been asked will I blame myself for not doing the recommended chemo for prevention, I say no I made an informed decision with the info that I had. I see many people who say at least I won't blame myself because I did the chemo. Oncodx does not tell you wont get cancer back it is just quoting some statistical results based on tamoxifen treatment alone vs with chemo. Some people cling to their number like it is a crystal ball.
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Meow13, since I should have never been given it I can assure you all that I don't cling to my 100 like it is a crystal ball. Until recently, didn't know HERS2+ would never be correct but I have lived with that for years. I was certainly P*ssy when I confronted the onco who ordered it way back in 2010 & all he could do was drop his head down & look away. That Breast Score of 100 has followed me around for a long time. Now I don't believe any blood work or pathology report unless is it repeated & repeated. Just saying.......
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Norma, I hope you didn't get stuck with the bill. The 100 must of enough to put your BP through the roof. But it turns out your were her2+ so the score doesn't mean anything. Chances are with you now you will never see that cancer again.
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Got it! My bad words were under treated. Okay, let's change that to over treated and have the same discussion. All those women who had chemo when it didn't even do them any good. The radiation damage to hearts and lungs right across the nation. Tamoxiden and AI'S being taken that aren't even being metabolized by your body. Does that make a difference or does it just scare more people? How about oncotype tests where women stop taking Tamoxifen because they don't like the side effects? Their score was low ASSUMING they would stay on Tamoxifen for at least 5 years. Now it's 10 years.
Maybe I just meant that early stages didn't used to be taken seriously enough. Some women demanded chemo and rads - got second and even third opinions until a doctor finally said what they wanted to hear. All those women with slow growing cancer that chemo doesn't even work on getting months of chemo. No one told them chemo only works on fast growing cells which is why fingernails and hair die off. Pouring toxins into their bodies with chemos that didn't even recognize their slow growing cancer. What a waste of some healthy bodies!
Why not just go back to its a crap shoot. You can read the "Just Diagnosed with a Recurrence or Metastasis" thread. Check out the posters and see that they are stage 1, 2 and 3. Not just 3's like so many assume.
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Barbe said: "Maybe I just meant that early stages didn't used to be taken seriously enough." and " All those women with slow growing cancer that chemo doesn't even work on getting months of chemo. No one told them chemo only works on fast growing cells..."
Wow, just wow. If you don't even know what you mean, why would you even say things?
Also, in regard to your comment that chemo only works on fast growing cells...are you trying to scare people now while totally disregarding facts? It's already been proven in this thread that your statement about it is false. Sure, chemo is typically more effective on fast growing cells, but it's wrong to say it just doesn't work on lower grade cancers. Go back and read on this thread or on others where people were given chemo for lower grade cancers and where it worked. You've confused chemo working best on fast growing cells and turned that into it not working at all on low grade cancers. For the women who have had their MO's tell them that they needed chemo for their low grade cancer, are you saying you know better than their doctors?
I'm sorry, barbe, but you're repeating stuff that has already been disproven--and in this same thread as well as others and doing it without regard to the effect it has on other people. At this point, I can only assume you're willfully dismissing science in favor of your own sensationalism.0 -
Barbe was clearly undertreated and is bitter about it (rightfully so.)
But I don't think it is fair to scare of early stage survivors by saying it is just a crap shoot. True that some early stages do become Stage IV, but the statistics are in their favor. And the statistics are quite outdated, even more favorable at this point in time.
I do, however, believe that chemo should be given a heavier consideration for those that are on the fence (or whose medical team is on the fence.) Age and other health issues should be a factor, but if you are young and healthy, chemo should be faily easy. The only hard part is losing your hair. And THAT is not worth the chance of losing your life at a young age due to cancer.
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This thread is the reason my oncs say not to go online. There's way too much being thrown around.
My doctors explained stats this way: look at the stats for the doctors and/or teams who are treating you.
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Hi, readytorock. I agree with a lot of what you said, but I did want to elaborate on the chemo part. I want to preface it with the fact that I know not everyone has the result that I had, but it's a bigger number than originally thought. I was 34 when I had chemo and was very healthy (other than the obvious Triple Negative diagnosis) and I've experienced life-changing bone and joint issues from chemo. I've been to multiple specialists for it and every MO I've consulted with has told me that they see it in a small but significant number of patients. Many people describe it as arthritis or arthralgia, but there are other similar manifestations of it as well. That's not to mention the problem that so many have with cognitive difficulties (chemo brain) from treatment or the elevated risk of heart problems or other cancers as a result of chemo. Cyclophosphamide, which I had and it looks like you did as well, has a small but well-known risk of cyclophosphamide-induced leukemia. These are highly toxic drugs and they should be used only when the benefits outweigh the risks.
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I think it's a good thread. We are all different is what it boils down too. I don't think looking at a doc's stats or tx teams stats is end all at all though it's a good indication to go with that team. There are always going to be people who should have been gone long ago and are not and those who shouldn't do. It could totally be regardless of what kind of team you have or tx, assuming the team isn't a complete fail. All it takes is for 1 cell to escape and that's it.
That's why I don't think there will ever be a cure. Too many unknowns and things that don't add up. I think maybe an early test of some sort to catch cancer before it becomes cancer hopefully for all cancers, but cure- nope. And I too get pissed if someone tells me I'm cure just because I'm done with tx and am pills now. So many uneducated people.
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Gardengypsy, there's a lot of truth in that!!!
Beesie, Great illustration.
Ultimately statistics are numbers. We are individuals. Things like the Oncotype are tools to be used in the bigger context of the patient, their health status, etc... They are not crystal balls and do not predict the future. They are tools to be used in context to aid in treatment decisions. Basically everything Traveltext mentioned comes into play as far as recurrence. If you look solely at my numbers, it might be surprising which side of the stats I fell on. If you knew my family history, you would not be surprised. I was not surprised. (Annoyed, yes. Surprised, no)
Since none of us has a crystal ball, we each have to make the best decision we can given our situations, and do our best to move forward. Whether or not you agree with others' treatment decisions (not just chemo, but rads, surgery choice, hormonal, complementary, etc) don't question them; they are their decisions based on their unique circumstances. We all would do better to support one another's decisions. We're all making the best decisions we can, and for many the outcome will be favorable. For others, sadly not. Either way, we can all be supportive of each other, and all remain cognizant of the fact that everyone is dealing with emotions, hormones, etc. as we try to navigate this path forward
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So yep Garden Gypsy - some people are not even trying to be courteous anymore, let alone nice. We don't need to continue to call people out when we are all in the same boat.
Kbee is right - we need to be supportive of each other. Let's dial it back please.
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Well put KBee. And I'd add that, today, nobody should say "don't go online". That's a hangover from the early days of the Internet. You might as well say: "don't go to a library". So many bc search terms bring you to BCO because it was been serving people so well for so long. I'm on threads where people's lives are hanging precariously as they go through extra treatments. People are very supportive in these cases.
However, this thread certainly is a bit of a free-for-all. This doesn't bother me, but I agree with gardengypsy: "there's too much being thrown around." Much of it is repetitive and a bit too personal. Although that's human nature I suppose.
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This is hard stuff. Kindness is healing. :-) :-)
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Was going to post this link from the recent SABC Symposium on the Femara thread, but it’s also relevant here:
Extended (5 yrs.) AI therapy might not be worth the risks
Getting back on topic, the takeaway from this thread is that there is no “one size fits all” when it comes to treating early-stage BC, and that there are many permutations & combinations even among tumors caught at the same stage. E.g., a Stage IA could be luminal A or B, HER2-type, triple negative or triple positive. It could be a Grade 1, 2 or 3, and among the two lower grades there could be different histological attributes (tubule %, mitotic rate, differentiation) resulting in an identical grade result.
Travletext is spot-on when he says the pathology report is just the jumping-off point for chemo vs. no chemo, which anti-hormonals to use, adjuvant or neoadjuvant, type and total dosage of radiation, etc. Given three women with the same stage & grade (let’s say all node-negative and <2cm) and with the same OncotypeDX score (let’s say “high end of low-risk,” 16 or 17) there could be three different treatment plans—all of them within the parameters of “current standard of care.” Woman A is 42, peri-or-premenopausal, with dense breasts, outstanding cardiovascular fitness and no family history of early CV events, with kids yet to raise. Woman B is 52, perimenopausal or newly post-menopausal, at moderate CV risk (low Framingham score on the cusp of rising), with young adult children and a career from which she has no desire to retire, and a history of secondary sinus or bronchial infection after a cold or during allergy season. Then there’s Woman C (okay, me): 65, 10 years post-menopausal, adult child, retired from primary career and turned her avocation into her vocation (which chemo-induced neuropathy and/or hearing loss would end), moderate Framingham score, family CV history a train wreck on both sides, asthma, frequent secondary bacterial infections after cold or allergy, and multiple antibiotic allergies. With all those factors, grade 2 with mitotic rate of 1, and an ODX of 16, both my MO and I felt the relatively small DFS benefit from adding chemo to AI therapy would not be worth the risk and might result in a shorter lifespan due to the side effects. Were I 52, I might have considered chemo. And if I were 42? Sign me up to get my port installed.
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Barbe, the stats I posted show you clearly and definitively that your impression from the boards is not supported by the facts. Whether I am early stage or not is immaterial.
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Barbe, what do you mean by this: "All those women who had chemo when it didn't even do them any good."?
How do you define "do them any good"?
Chemo is not a cure, because there is NO cure, period, end of story. I had ILC, grade 2, a fairly "slow" cancer. There is also a lot of misconceptions about chemo efficacy in ILC. I had extensive and nasty chemo, because my doctors were convinced that I was right on the verge of developing mets, probably correctly. Will it "cure" me? Of course not. Has it very likely extended my life with excellent QOL for several years already? Yes! So even if we find mets tomorrow, it has already done me a world of good.
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Traveltext, amen!
"And I'd add that, today, nobody should say "don't go online". That's a hangover from the early days of the Internet. You might as well say: "don't go to a library"."
I also find it annoying, because the doctor, who says this, assumes the patient is too stupid to read critically. It is hard to read medical stuff, that much is true. I have certainly made mistakes along the way, because I don't have medical training. I also wasted a lot of time debunking all the quack theories people sent me. But, I have also gained a lot of good and useful information. If something really doesn't make sense I ask the docs. They are used to me by now and know that I read. In fact, when DH got cancer, my onc (who treated DH as well) had me help him cull articles and studies, because it was a rare and difficult cancer that he had little experience with.
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Hi guys. One more opinion. I think we have to be really careful about just throwing things out there without any science to back it up. I understand that most of us are not medical professionals. However I think its important to state it is your opinion only. Many people read these posts and seem to be confused about that. Facts are important and so are opinions but there needs to be a distant difference between them. Good luck to all navigating this disease...
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I have the lump for at least 2.5 years before it was diagnosed last month. It grew from a pea size to about 2.5cm. Scans and biopsy confirmed there is one node involved. I guess it is just a slow growing and not sneaky cancer (though it is grade 3) and my ki 67 does reassure it. But I am still kind of worried it has spread to other organs already and it is just about time to show up in scans.
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About going online, took my mother to physician's assistant for her new drug zoloft she was having diarrhea so the woman looked up side effects on line and says yes 24% of the people get diarhea as a side effect. You know we can do that too. Frustrating to drive all the way there and back for thst flash of information.
I really think there are people on this website that are more knowledgable than some of the physicians I have seen because of the extensive research being done and going through studies and looking at the data collected. When you personally have a disease you know tend to educate yourself and take control.
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Hi Meow13, there definitely are knowledgable people on this website but I would caution against taking their advice over physicians advice. Online research is useful but it doesn't substitute for years of medical education and clinical practice. I personally prefer to run whatever new findings I see by my MO and get her opinion before coming to any conclusions not to speak about decisions.
I doubt anybody posting here has actually looked at the collected trial data or attempted to analyze it.
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It is still the first part of this thread and the fact that no entity accurately tracks progressions that blows my mind (I did not know this wasn't being done). That a stage 1 person remains medically labelled and counted as a stage 1 person even when they progress to what we commonly consider stage IV. If someone actually kept track of this, we would know the real stats and much of this debate among ourselves would be a moot point. Someone, some central agency, really needs to collect this data so we/they can know what the numbers really are, how, if ,and when this disease is likely to progress. It frustrates me to no end that this not being done. How can we be expected to get a real handle on this disease w/o this type of data being compiled and studied? Crazy!
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How does one find statistics for one's oncologist? I know my doctor is following a typical chemo protocol consistent with my diagnosis, but have no idea about her success in testing similar patients nor whether she tracks that information.
As to the 30℅ figure scaring people, I have mixed feelings. As someone with triple negative cancer, I was frustrated when I saw a five-year survival rate of 99℅ prominently displayed at Susan G Women's website. That suggests the war is practically won, but that's scant comfort to me when my personal prognosis is far less encouraging. When I got my diagnosis, so many women suggested I would be absolutely fine because they're led to believe early detection is basically a guarantee of long survival. To me, that might make people less likely to donate to breast cancer research, which would be a disservice to the thousands of women who continue to die of breast cancer annually. I'm not suggesting we needlessly fill newly diagnosed women with dread and anxiety, but neither should the general public think that breast cancer is cured.
Lyn
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Doctors, and indeed medical institutions, are not permitted to release details about their patients for obvious privacy reasons, therefore you'll never get any meaningful stats from any of your medical team. While we are, by and large, consumers of medical information rather than trained health professionals, we sure need to get up to speed on things to advocate for ourselves right through treatment, and beyond, to achieve the best outcomes. The professionals, however nice and attentive they may be, are very busy people who have their mind on the next patient before they have finished with you. And in the case of men with this disease, they are making things up as they go along due to the paucity of research on the topic. Thankfully, m doctor is happy that I'm keeping her on her toes.
The knowledge base on BCO is phenomenal as is the generosity of many who willingly share their experiences and give freely of their time to help people through their initial diagnosis and beyond. Why go all that way, as Meow did, to have someone look up a side effect on the internet when you can do this yourself or put the situation out there to the BCO crowd?
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