Will 30% of Early Stage (1-IIIA) go on to metastasize??
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I was always the skinny girl, 5'10", 146lbs, would nurse one drink over the evening when having a rare social drink. Always ate well, some stress, but don't we all? Very active, still am. So why me? I really hate that BC seems to have become a "blame the patient" disease. If only you lost weight (where from?) If only you didn't drink (I didn't hardly at all) If you only ate properly (can't remember the last time I ate processed or fast food)
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Another petite skinny kid here - weighed 98# when I graduated college and FLAT chested. If I recall I had my period when I was age 12 but they were long and heavy painful cycles. I continued to be quite flat until my late 30's when I was taking OC. Body changed and I finally started to add on weight and sprout some breasts. My first mammogram stated I was moderately dense - it was not considered a risk back then. I was always physically active but not always best diet choices. Lots of respiratory allergy and bronchitis in later years which I now understand points to poor immune system. So I've learned to make smarter healthy choices and get my priorities clear. It is a toss up for some of us who got BC without a strong family hx. I ignore the blame the patient articles - they are an excuse to get around other environment triggers we have been exposed to. The stage 4 ladies are my heroes with their wisdom and strength. My journey is no comparison....
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What were your oconotype Dx scores? Mine was 47 :
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phaila - this link may help you. Oncotype was not available for me when I was dx. I was Ki67 score 20 and not sure if that test is used anymore.
http://www.breastcancer.org/symptoms/testing/types...
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Why worry about oncotype scores? The higher numbers get hit harder with treatment. The lower numbers get a different protocol. They didn't even have oncotype scores when I was first diagnosed. Again, the number is just for treatment purposes, not for recurrence possibility.
I've read here way more stage I and II gals go on to stage IV than the ones that start off with stage III. The treatments are aimed harder at later stages which is skipping over us lower stages and it's showing up to be a wrong decision. "Early stage" doesn't mean shit.
That's why the recurrence rate for stage I is so much higher than other stages!
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I think its wrong to say that more stage 1 get recurrance than stage 3.... Its a crap shoot and genetics...its not because of less treatments ... I like to think that im cured until i get that phonecall again if thats my fate and with that said im not in denial but im not going to analyse it cause it didnt ask me the first time either
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http://www.medscape.com/viewarticle/859934
Study Refines the Risk for Breast Cancer Recurrence
(This is site is FREE to register if cannot read this article.)
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OMG. Is it just me, or is the amount of misinformation on this board (not this thread in particular) astounding lately?
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My risk as an ER+ cancer patient increased after the 5 year mark as my cancer was slow growing. I actually saw my onc more often after my 5 year mark. I recurred at 7 years. So reaching a 5 year mark doesn't mean much in breast cancer. There are ladies on this board who recurred 20 years later. I'm not talking about a new primary, but a recurrence. Big difference.
There is no cure for breast cancer. (That's why there are Run For The Cure races all over the world!) The best we can hope for is no evidence of disease NED.
I still say statistics don't mean anything. Numbers can be skewed any which way you want them to. You have a 50% change of a recurrence. You either get one or you don't.
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Kayb - can you paste your post into the Clinical Trials/News Forum? I posted this same article link there too. THANKS!!
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One thing to note - the title of this thread refers to metastasis. The medscape article above refers to local recurrence. No one dies of a local recurrence.
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TravelText There were a group of us that went through surgery then chemo all the same time. I became very close to t his one gal who lives in Brisbane!. We so wanted to meet. So she decided at the 5 year mark she would come to the USA (New York) and we'd all meet as a group. It ended up only 2 of us managed to meet her. (Other one lived in NYC). We had a blast.
We had never met in person but we seemed like such old friends. I has skyped once with this gal and the other I had chatted on the phone a few times but most of our conversation happened here, then on facebook.
We will do it again. I hope some day to be able to meet her in AU!
ChiSandy these are just risk factors but don't truly mean that's why you got it. My risk at my age when diagnosed. was actually less than 2%, below average. Hell they even say tall women have a higher risk (I'm 5' 6" so I'm a little tall). Granted I do admit I have met a lot of tall breast cancer survivors but short ones too.
SummerAngel I hear you. I was never overweight (well could lose a few now but hardly a concern of my MDs) and hardly drank. There are other risk factors. I do believe stress is one of them. I do feel exercise is key too. And remember that reducing risk never means you will remove all risk.
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Statistics are not meant to be predictive of what will happen to an individual. We must clearly understand that and not say that they are meaningless or 50/50, because they were never intended to predict what might happen to a single given person. If we do interpret them as individual predictors, then we may be very disappointed or angry.
Additionally, bco is not a valid representation of all women with breast cancer (at any stage or any type). Although it is tempting to imagine that we are a fair representation of women with bc, we represent women who are likely to post on message boards more than anything else. It is tempting to draw some casual conclusions from what one reads here ( I have done it myself) but that's not the same as empirical data.
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I saw this today Odds of early breast cancer spreading
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kayb, thank you for posting that. I have a local recurrence that put tears into my surgeons eyes! I will be getting such a large area of radiation that they are telling me now I will have damage. I had three different doctors tell me that rads is a must due to the recurrence. My Papillary Carcinoma is less than 2% of all breast cancers. The odds of recurring were slim to none. It has come back with a vengeance. So where were the stats when I needed them?
lekker, a distant mets or a local recurrence of the exact same cancer is the same thing. We are "late stage" or stage IV - however you want to put it. A new primary is a different matter.
This is the first support board I've been on in my life. It saved my sanity during my ordeal. It gave me the courage to get a double mast rather than tempt fate to have to deal with the same issue in the other breast in any number of years. I am very unlikely to post on another board on any topic as I haven't yet in my 58 years and apparently time is running out....
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I too follow the death & dying thread. These women are amazing and they can teach us so much. Hopefully we won't need it - or need it soon - but I appreciate their strength & knowledge as they live with mets daily.
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CP & Kayb - Thank you for posting the article. I'm always looking for numbers that are in my favor. I'd like to see the same article with the numbers for MBC.
A number of posts mention posters who bring forward new research and explain information. Aside from the BCO Breaking News thread, can anyone suggest other threads to follow to stay current or is it better to follow specific members? Is there a way to follow members on here?
Thanks everyone.
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barbe1958, you said, "...a distant mets or a local recurrence of the exact same cancer is the same thing. We are "late stage" or stage IV - however you want to put it. A new primary is a different matter."
I have a local recurrence of my former cancer, and I am not Stage IV. That is reserved specifically for distance recurrence to another part of the body. Distant mets and local recurrence are NOT the same thing.
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Thank you for the link, Iago. I think it's vitally important we clarify this difference, as the fear of "recurrence" looms large for all of - and not all "recurrence" is created equal.
My recurrence is classified as "Stage I, local recurrence" (there was initially debate on whether I had a local recurrence or a new primary, but we have finally settled on LR. That's a different story, however). From what I have learned from my many years on BCO, and from my MO, Stage IV only refers to distant recurrence to another part of the body (brain, bones, liver, lungs, distant and not regional lymph nodes, etc.) In my case my MO is watching two distant lymph nodes and two lesions in my lungs; if they respond to my current chemo regimen, we will then move our discussion to the possibility of my recurrence being "distant metastases" (at which time my stage will be considered "Stage I with distant metastasis" although around here and for clarities' sake we often say Stage IV).
My MO admits we talked extensively about my chances for distant recurrence (with an Oncotype score of 42 I had a 28% chance of distant recurrence even with chemo and Tamoxifen), but never about local recurrence because that chance was much, much smaller. The chart that kayb supplied shows exactly that - how insignificant the chance of local recurrence is. So we don't often talk about, but it does happen. And local recurrence does increase the chance of later distant recurrence.
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My surgeon, oncologist and radiologist are all calling me late stage, or stage IV. So unless there is something that they aren't telling me (l do have quite a number of lymps node enlargements showing up in my CT) I am going on what they are telling me. From our own bco site, here is an explanation:
Keep in mind that a recurrence of breast cancer or metastatic (advanced) disease is NOT hopeless. Many women continue to live long, productive lives with breast cancer in this stage. It is also likely that your experience with treatment this time will be somewhat different from last time. There are so many options for your care and so many ways to chart your progress as you move through diagnosis, treatment, and beyond.
Recurrent breast cancer is cancer that has come back in the same or opposite breast or chest wall after a period of time when the cancer couldn't be detected.
Metastatic breast cancer is breast cancer that has spread to other parts of your body. Both are considered advanced-stage cancer.
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This is really interesting, Barbe. I have flat-out asked my MO if this makes me advanced stage and he says no. They're treating me as Stage I TN, and we talk about the 3-5 year window for metastatic or advanced-stage recurrence. So I'm really, really confused.0
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Different terminology is interpreted differently by different oncologists. Some consider advanced stage disease to be stage III and stage IV. Some consider it just stage IV. Some consider all recurrences to be advanced stage disease, and some do not. As long as your are treated appropriately for your specific situation, that is what matters. You will find similar varying definitions for Luminal B cancer.....and lots of other things as well. Medicine is science and it is always evolving. As such, it is constantly changing, and definitions of things will change as well. Don't get too worried about terminology. Barbe, you could ask why specifically they are considering you stage IV. If it is in the ribs, it would be. If it is in the neck nodes, some docs consider this stage III and some stage IV. Clarification might help you understand. It is frustrating to have such different "definitions".
In my case, my recurrence was in 2 spots. One is a local recurrence at the initial site and one is a regional recurrence at a site about 4 inches away (just under the edge of the pec muscle). It was not in my nodes however. It is technically a local recurrence and a regional recurrence but not distant metastasis. We do not know the size of the first tumor because it was not imaged and it was taken out in chunks because ti wasn't thought to be cancerous. Technically based on what we know, it'd be considered stage I, but my oncologist said we aren't even going to stage it because it completely under represents what it is and is irrelevant anyway in terms of how we treat it. I appreciated this.
Statistics have their place, but the numbers can be skewed in many ways based on how they're presented. And of course statistics are great...except when you are the statistical anomaly. When my surgeon quoted me statistics once, I stopped him. I said my statistics are either 0% or 100%. If it does not come back, it's 0% for me. If it does, it's 100%. Those are the only statistics that matter to me!
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Thanks KBee, I was getting pretty confused like Nancy! It was making me wonder if I'm worse off than my MO is telling me. It is a chest wall recurrence as I had a double mast. There are lesions in both kidneys, my liver, an axilla node and neck nodes. It is not known yet if those are cancerous (except the chest wall) but will be re-scanned in a couple more months and if they've responded then we know they were cancer, too.
I was told by my MO that I will be on Arimidex or something like that for the rest of my life. I didn't ask him how long that life will be because I know he doesn't know.
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Barbe1958 As Kbee said Early stage is Stage 0-IIIA. Stage IIIB and Stage IIIC are considered late stage and may be curable. Stage IV is also late stage and rarely curable but many do have years of life after diagnosis.
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It sounds like they are assuming the kidney and liver lesions are breast cancer, which is why they have classified you as stage IV. You may want to request to have them biopsied because sometimes lesions at distant sites have different hormone and/or HER2 status than the primary cancer, and thus may change treatment strategies. It must be frustrating waiting to see what happens to the lesions over time. I hope you're doing well on the Arimidex, and that it keeps teh cancer held back for a very, very long time.
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lago- there is no cure for any stage of bc. Only NED for hopefully the rest of your life.
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Artista928 - my MO uses the word "cured" with me. I hope he's right...
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Nancy HB dont allow any topics here confuse you.. You must listen to yourdoctor cause hes the one taking care of you and thats why you are ok andwill be for much much longer... These boards are great as long as they dont throw you off of the life your supposed to be living. I emailed my doctor asking if a case like urs is considered advanced and he replied "no"
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My MD uses the word 'cured' too (but not if I can stop her first) plus my paperwork lists the goal as 'curative' in many places - but she also says that 70%-80% of BC patients would be cured with surgery alone, then others are an added percentage due to adjuvant therapies ....they are still not sure who falls in the 70/80% so everyone gets treated (I know this has been said before). She told me the "30% metastasize" is a very outdated number based on old numbers - from the '80's and early '90's, BUT she admitted she did not have any newer numbers but was going to look for me. She told me that oncodx is a good predictor of prognosis in most cases, but is NOT a perfect science which anyone here of course, knows. She feels it is definitely old school to lump all stage 1's together: there are many types of stage 1 BC (as we all know!) and that one persons stage 1 prognosis is obviously not the same as another's and therefore, their recurrence risk will not be the same either ...
Artista: just musing on your comment about NED, (as I sway this way and that over that very thing: NED vs Cured - which can it be???) but, my mum has two friends that had BC in their early 40's (1 was 41, I think? The other 42, both said Lump the size of a walnut or bigger- 2 lymph nodes for one, 4 for the other but unknown histology) they both had a mastectomy and auxiliary clearance (no adjuvant therapy) and are now 78 and 79 - no recurrence and as fit as a fiddle - would one say they were cured? Do NED and cured become one and the same at a certain point?
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