Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Thanks Minus!!!!
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Oh, Runor, you're neither stupid nor is your head up your arse. Cancer is a frightening experience. I just hope that you're being frank with your medical team so you can get all the help you need. I know I sometimes feel pressure to be brave and strong, but we should feel comfortable seeking assistance. Seeing a psychologist certainly didn't cure my Fibromyalgia, but she taught me some biofeedback techniques that helped with pain and muscle relaxation. That's what made me think a therapist might provide you with tools to better cope with anxiety.
Now that I've finished radiation, I need to look into getting a lymphedema pump. I've met my catastrophic out-of-pocket insurance requirement for the year so need to cram in as much treatment as possible in the next few months.
I wouldn't worry about tamoxifen beyond five years now. Research is always evolving so you can adapt accordingly as new information becomes available. I'm glad your friend provided a badly needed hug. :-)
Lyn
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Going back to the original topic... Some people seem to be unhappy about medical professionals not telling every early stage patient that (s)he can recur and there are no guarantees. What if we look at it from a different perspective? There are plenty of conditions that are potentially deadly but people can live a long life with them. Take diabetes. Most will go on for many years, some will end up with dire complications and eventually die from it. Isn't it the same with early stage breast cancer? %% might be different but shouldn't we look at it from the same angle?
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hmmm
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I agree with Marijen. How do we know what to watch for in terms of side effects if we don't know anything about them? And many of them can be alleviated or lessened if caught early enough.
My MO did talk to me about numbness in my feet & fingers (CIPN) after the 4th dose, and I made the choice to continue Taxotere. I wouldn't make the same choice again since my feet are permanently dead. Both my BS and my PS pooh-poohed the possibility of LE. I found a specialist on my own the first time and through my RO after my recurrence. Thank heavens I've been able to limit it to truncal & breast LE so far, and keep it from moving down my arm(s).
I do understand Muska's point. I just don't like to live w/surprises in the background so personally I'd rather know & research up front. Like everything else about this stupid journey, each of us have to find our own "comfort levels". (ha-ha-ha - since nothing about BC is comfortable)
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The information should certainly be disclosed and explained, but we also need to adjust our expectations. As we get older the risk of getting cancer increases dramatically. So getting a relapse of BC or another cancer should not come as a big surprise (unfortunately.)
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Well, I'm the opposite of some of you. I would hate it if my doctor was all doom & gloom and scared me too much. And I like to do my own research, I don't need every little detail spoon fed to me. I'm a very good researcher and can weed out garbage from credible sources and do my own thing anyway. For example my MO is not into complementary stuff, so I don't even talk to her about it.
So, by the sound of it the medical community can never keep every single patient happy.
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I must admit I agree with Erin ..We all know that there's a chance we could have a recurrence....but it's also nice to to your doctor , and come out feeling GOOD too.
After my diagnosis , and my BS had all my pathology back he did talk " facts and figures "..told me what percent my risk of a recurrence was ..and what symptoms to look for ..and in the next breath said my prognosis was good ..and he'd keep me under his wing for the next 10 years while I'm on tamoxifen....I left feeling GOOD that he felt there was good chance I might be here in 10 years ...!!!
He didn't PROMISE I'd be here in 10 years ..he can't ..no - body knows that . Even if we hadn't been diagnosed we wouldn't know that ..
Like Muska says, as we age our risk factors go up for all cancers and diseases ...and EVERYONE ( even those who have never been diagnosed like we have ) has to live with that hanging over their head as well.
I have had shocking stress caused by this diagnosis..as we all have ..even spent months having counselling...but have decided that pondering every study ( which I was doing ) doesn't help much ..because for each of us "it is what it is ".
Edited to correct spelling mistakes
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You can get lost in the statistics. You can drive yourself into a rage or a deep depression. You can waste time that would be better spent living life. I got BC - not my fault, nothing I did - just bad freaking luck. Regardless of stats, I am a stat of one. Yes, my TNBC is agressive, yes it has a better chance of metasis than other cancers and there is nothing can do about it. I trust my MO, I can do intelligent research. The most important thing I can do however is live my life
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Hear, hear, VL.
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Well said V22. When I started I was digging and digging but in the end I was not out living my life. So now unless something big breaks it's all whatever to me. I take my Tamoxifen and be healthy as I can be. If I recurr so be it. I've done all I can/feel comfortable doing and so it's out of my hands. If a mix of this and that was a sure thing I'd be all over it. But those who do the extra this and thats like supplements, herbs, oils cannot say if that's the reason they happen to not recurred/mets. They could have taken none of that and still recurred. But we all do what we feel 'helps.'
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Bosum:
I have good doctors (I think) but still feel I must research and be a part of decisions. And question what/why we're doing something. I guess I'm a control freak. I expect this will lessen as time goes on, somewhat.
My mom, on the other hand, was TNBC (stage 1) and has never researched, followed what her docs said verbatim, etc. Even got lump when she wanted BMX. And 10 years later...doing great. Still drinks wine, watches diet kinda -- but she gets a TON of exercise and I honestly think maybe this is the key. I take all kinds of supplements (I did this before BC) and she takes zip!!!
So who the hell knows! CRAPSHOOT.
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Bosum.. EXACTLY..you nailed it ..it's CRAPSHOOT !!!
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CRAPSHOOT. The most used word on BCO.
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So true, Traveltext. I think the word expresses frustration and bewilderment, and rails against blaming the victim. I actually believe there are things we can do to improve our odds, but things out of our control or understanding play the bigger part. Genes, environment, chance.
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I prefer to be told the truth.
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I'm happy to hear what might be the truth, but I'm wary enough from experience to understand that I need to learn all I can about my particular bc from many sources. And I know that unless I advocate for myself, I won't receive the best care.
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I think maybe we're talking about two different things here.
Information that might allow us to do further research that might make our journey's easier - vs - information that can be negative. Some of you seem to be expressing the opinion that you don't want to know the % that might metastasize &/or earlier death. (the topic of this thread).
I don't want a doctor to scare the sh$$ out of me by overwhelming me with pronouncements that can't be verified by solid proof (no such thing with BC since we're all different). On the other hand I like to research all the options because I don't believe any one doctor knows everything. I have no reason to believe my cancer will come back (again), but it did once so I know it can. In the mean time, I don't sit around & worry & wait for that possibility to happen. (yes, it's harder the second time) I believe in living the best life I can right now - emphasizing quality over quantity. I'm cutting back on the wine, but not giving it up. And I'm trying to arrange trips vacation places where I can meet with friends that I may have neglected in the rush of every day life. Everything in moderation.
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Truth isn't always "true" - it can be subjective. Even with an Oncotype score of 42 my MO's "truth" was that I would live a long and happy cancer-free life, and had little.reason to worry. When i had a local TN recurrence four years later he told me I could still beat this. Six months later, bone mets. He never expected this for me. He didn't lie to me - his truth was the norm, the expectation, the horse and not the zebra. Looking back maybe he should have told me more - but it wouldn't have changed my outcome. And I would have spent four years worrying and fretting instead of enjoying my life. I have no regrets
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I don't know if I'd say that people prefer not to be told the truth. My interpretation is that it is ok if docs don't cover every minute chance of negative things happening. I also appreciate it when my docs tell me the most likely side effects of tx and don't place an emphasis of rare se's. I am quite sure that not all se's are known, especially if it is an extremely low incident se. I say this as someone who experienced an extremely rare complication after port installation. Did my surgeon tell me that a lung puncture was possible during port insertion ? Probably, but I didn't remember it at the time. I never blamed the doctor nor anyone else. My complication happens 1% of the time and is usually discovered immediately. Me? I went two weeks before I was hospitalized and the condition corrected. Stuff happens and we can't foresee or prevent/predict every possibility.
I have been stage IV for 6 years. I spent a whopping 6 weeks thinking I was IIB and even then, my mets were discovered quite by accident (long story). I have spent little to no time being pissed off or finger pointing. I have thoroughly enjoyed life, am grateful to my medical team, family and friends. I don't want to see greedy but I'd like at least another 6 years. As a matter of fact, I am less upset now over so many things that would have previously upset. Living well has become my priority. I am grateful for life and have made room for joy, plenty of joy. There are no guarantees, no absolutes when it comes to treatments. That's just the way life is, isn't it?
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I think we all realise that 30 % of early stage breast cancer WILL go on to metastasize ...what we don't know (no matter how many studies we read ) is which of us will be in that 30 % for sure because it IS crapshoot !!! ( Traveltext ..there's that word again !!!)
Really I am very glad I can't see the future..I want to enjoy my life NOW..hope I won't be be in that 30 %....but if I end up being in it I will then hope that I can still have many happy years living with it .!
Sometimes it's true that " ignorance is bliss" ..and no matter how much we read or research we still do not know .
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Do the math..... 40,000 persons die of breast cancer each year divided by 250,000 new cases each year = 16%; 40,000 persons die of breast cancer each year divided by 3.1 million persons living with a history of breast cancer in USA = 1%. Even if bc metastasizes, it appears that it does not mean that overall survival decreases. Don't let your mind wander to variable statistics. Look at the data we have and do your own math. If the 30 % metastasized and died, out of 3.1 million survivors, that would be 900,000 persons a year. That seems a far cry from 40,000. Of the total population of 321 million persons, .0001 die of breast cancer, .0004 die from lung cancer, etc. Do everything you can through nutrition and exercise, to thwart the spread of any type of cancer. Decrease sugar, cut out alcohol, leave the cigarettes at the gas station. Don't get drug into someone else's gloom and doom theories.
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marijen, where are you getting the idea that some of us don't like to hear the truth? I know my stats are pretty bad, so does my MO and she knows that I know, even though I never asked her. Hey, I can google. I don't need constant reminder of how serious my diagnosis is, it's in the background of my everyday existence anyway. I need her to focus on my treatment. And frankly I don't want her to waste her time and mine reading out 5 pages of side effects. I can read, too. And no she is not perfect.
I know as cancer patients most of us are angry or have been angry at some point. It's unfair, it sucks. Some blame the Big Pharma, or their medical team or whatever. Not saying we shouldn't ditch crappy teams or treatments, but at the end of the day we're dealing with cancer, not checking into a 5 star hotel.
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The problem I have with the stats are that my stats might not be the same as those in the study.. I know my oncotype score was intermediate even though I was lymph node involved and extranodal. My cancer spread to my lymph nodes and grew to 2.6 cm in 9 days, but yet the Ki-67 score was low. My biopsy pathology was completely different than my surgical pathology. The surgical pathology was less aggressive and Her2 negative. I doubt there were any studies done with exactly my same stats because those don't seem to include extranodal or fast growing tumors with a low Ki-67 score in those studies. Also some of the stats are taken from other studies with different chemo drugs and radiation is done differently now too. I have been having tomography radiation, some patients are now getting proton therapy radiation. These allow much stronger radiation than would be safe otherwise. The new Her2 drugs haven't been around long enough for a 15 year study, so I think I just want every chance I can get regardless of the number they put on it, because I know my tumor spread very fast and was very aggressive. I opted for chemo as well as Her2 treatment. I am also doing intermittent starvation diet and a 5 day starvation diet before each chemo. I don't eat sugar and I am on a very low carb diet. I want to do everything I can to lower my chances of getting this horrible disease again. I put very little weight in the statistics that I have been given. I just don't want to hear my Dr. say a few years down the road, I didn't think you needed chemo, or whatever, sorry doesn't help. I would rather error on the side of over kill. I do know these treatments leave us at a higher risk for other cancers. But this cancer is my concern now.
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Michelle your math is faulty I believe, as you are figurung one year with the statistics of decades of survivors. Please correct me if I’m wrong
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Great convo on Oct 3. I agree with all of you. Crapshoot and LIVE your life instead of digging for every single possible thing making yourself nuts with worry, and others if you post here. Well said folks.
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Here is how I view statistics and bc: Statistics are a useful starting point for treatment decisions, and then we individualize as much as possible. Statistics are important for evidence-based medicine and for weighing risks vs. benefits. Statistics are also useful for pointing out where there is the greatest need for research. What statistics do not do is provide the crystal ball that tells an individual her or his outcome. So unless you are working as a bc advocate, once you have educated yourself and made the necessary decisions, I recommend moving on to something else. Continually searching for your future in statistics is futile and uses up time you could be spending on living your life. I know, I tried it years ago.
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I have been trying to catch up on all the posts but it is at 59 pages. I am not a big fan of the USA statistics because we do not have a clear reporting system. There are countries that have electronic records like Sweden and Australia I believe. Do they track stage IV progressions? Clearly this is information we would all very much like to understand better. The data here in the US is pretty nebulous at best. I met a gal who was stage IV she was the one that broke it to me that they would not change my status if I went stage IV. We really do not know if it is undereported and what the time elapse is .
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Yes, we need better mbc statistics to support our pleas for the right kind of research. And early stagers who join in advocating for this are helping themselves as well as their mbc sisters and brothers. Take a look at the MBCalliance web site.
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yes I will check it out. We all should advocate for better data.
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