lala, when I was diagnosed stage 1 in Dec 2017, my mother's very experienced physician told her I'd just have a sucky year of surgery and treatment and live to a ripe old age.
Now I'm stage 4 and odds are my mother will outlive me /sigh/
Moth, I know how you feel. A month before my diagnose I was told by my GP that I am so healthy that I will be a healthy very old woman. How ironic, isn't it?
With trillions of dollars poured for a cancer cure, it has become more of a profit than a cure. We are going from stage I to IV and we are losing our sisters every day because there is no cure. I'm sorry, I am feeling down anytime I hear we will get cancer cure in our lifetime.
Thank you for your answer. I just thought that some hospitals have very sensitive imaging equipment.
Very interesting discussion. One comment, as one of those who had “decades" between original diagnosis and recurrence I'm not sure if I feel particularly lucky. The reality is, numbers aside, BC is unfortunately a disease that hangs over us until we die of something else. I have a friend that used to describe it as the Sword of Damocles. In my case, while I was early stage, there were many things that pointed to the outcome I am now experiencing. And yet, at almost 16 years out, I was at the point that I was no longer looking over my shoulder. 🙄
All to say, generalized numbers are not helpful. As Beesie has so eloquently stated, the stats are hopelessly outdated and then the uniqueness of our individual diseases muddy the waters. I do feel that, for the majority of patients things go well. For some of us, not so much - crap shoot. 😉
Edited to correct a bizarre iPad typo.
Thank you everyone for your thoughtful discussion. I have been away from the forum for a bit and things in the world are making my heart heavy. My Oct 2020 annual mamm has been delayed due to covid and I feel a mounting sense of panic growing inside. I fear the mamm. I now know that a blissful life going in one direction as if I didn't have a care in the world can change on a dime. With one bad mamm. I fear the mamm. I fear not having one. I don't want to have my annual mamm. I don't want to miss it. Do I sound crazy? I am.
I fought taking tamoxifen tooth and nail. I struggled with it. I resented it. It does seriously crappy things to me. Killer leg cramps and vicious hot flashes at the top of the list. Seized joints and a vagina that feels like a bag of dry popcorn are next on the list. Yet the day my onc tells me I don't have to take it anymore, I think I'm going to feel shoved off a cliff. What will be between me and that 15, 20 or 30% recurrence coming my way? How stupid is that? Hate taking that pill and then not wanting to stop taking it. I think we all wish there was some way we could feel safe. Okay. Girded with some solid knowledge to hang onto. But there is no such thing. We are not safe. Oh god, I am sucking so bad today! I am sorry this thread gives you angst Beesie, but I do have it in my faves because this issue turns over and over in my mind. Especially when I find a new lump (buried somewhere in all the fat, wait, no, it's a cookie I lost earlier, never mind).
runor, I think most of us can identify with what you wrote. And to be fair, my angst over this thread is really just angst over the title of this thread. The discussion is interesting and important. The problem is that too many people read the title, read the first thread, believe the 30% to be fact, and spread it beyond this thread. The 30% stat has taken on a life of it's own.
The title of the thread was written in October 2013. The opening post was last edited in November 2013. It was a valid question at that time and the 30% was likely accurate at that time, recognizing that long-term survival stats by their nature are always based on people diagnosed a long time ago. So in reality the 30% stat was probably never accurate for those newly diagnosed at the time of reading. Regardless, a lot has happened since 2013. That's all been discussed in the 68 pages of posts but I doubt that anyone new to this thread is reading 68 pages of posts. They read the opening post and maybe the latest few posts. That's why I have to keep re-posting the same information over and over again, which doesn't give me angst but does tick me off.
Today, in 2021, the title of this thread is fear-mongering click-bait.
I wish there was some way to change the title to something more reflective of the current discussion, such as "What % of Early Stage (IA - IIIA) go on to metastasize?". Then I would be just fine with this thread.
Can mods not alter the title of the thread??
runor, I thought you were near me? do you have a date for your mammo? Cause if not, I know places with appts. There were supposed to be no delays for existing cancer pts. BC is pretty committed to no delays for us (surgical, imaging or treatment) hmu by pm if u want deets
Beesie, "That's all been discussed in the 68 pages of posts but I doubt that anyone new to this thread is reading 68 pages of posts."
I think I did actually read all 68 pages!
Yes, I too did read all 68 pages. Those of us who are interested will... But likely if Susan's Garden hadn't titled the thread as she did (30%) I never would have opened it in the first place. There are so many thread started that one has to be a bit selective in choosing what to read. So in the end, I'd hate for the title to be changed. edited to say - (Sorry Beesie)
MountainMia, I'm impressed!
I've been posting since the early days of the thread so I've read all of it but I've never gone back more than a few pages to review the discussion. I should do that. It would offer an interesting longer-term perspective.
I have been following this thread since I joined this community, but I admit I haven’t read all the pages. Even though the title may not be 100% accurate it appears to be pretty close and the discussions have been very interesting, probably one of the most intersecting threads i have seen over the past six plus years. I am not sure the name needs any change, after all what would materially change if it were 20 years vs 30? The bottom line is still the same, i.e. a very large number will progress sooner or later.
I personally feel at peace with this projection, but I admit it took a certain adjustment to get there psychologically.
Peace and health to all
I'm sorry I can't stop laughing at Runor's cookie )
Beesie - The writer in me objects to any changes without author permission. However, I think the mods could certainly add an edit to the original post that tells people not to freak out (as if by the time you get to BCO you haven't been massively freaking out already!) and directs them to perhaps the last 20 pages of posts where a more accurate depiction of stats can be found. That would be fair in my mind. Not a change, an addendum.
Moth - I am in the Interior. Shuswap area. I do not yet even have an appointment. When I called the booking dept they said they were backed up. I said I was already 2 months past my mamm date. The lady said they would be calling me in 5 or 6 months. This is not cool. I'm really thinking I should call my doc and screech a little. But then I think, is my boob situation any worse than anyone else's boob situation? Should I bump some other terrified woman who is also waiting? What's so special about me that I should get preferential treatment? My mind is not a quiet nor simple place.
Lilly - nothing better than finding free food in the fat folds!
runor...I think that idea for the moderators to do would be a heavy, complicated task. When i was diagnosed 11 years ago, I came here because there was so little info on the net about my rare type of BC. That said, what little info I could find was posted on the mucinous bc thread. That thread was a lifeline for me because I was able to find small nuggets of info that allowed me to pursue other info out there on the net.
I have kept the mucinous thread growing as new internet travellers have found their way to it and even some of them, with the info THEY have found BECAUSE of it are able to fine tune the thread because of what THEY found or EXPERIENCED.
Would I be comfortable if the mods added an addendum to the mucinous thread? No.
BUT...what the mods could do is explain SOMEWHERE ...when looking at older threads, readers should be careful in trying to understand that very long threads, started years ago, may not contain current info.
But...that should be obvious to a reader. Readers need to be critical thinkers. If not, they need to find an advocate who can help them CRITICALLY understand info.
Readers also need to understand statistics and if they don't understand it, they need to take a crash course in it OR again, find an advocate who does understand statistics.
And finally, when SusanGardens posted this thread, after I read it and wet my pants, I showered, changed into my armour gear and set out to find out whether or not the statement was affirmative.
Eleven years later, I haven't progressed YET... so....do I still wonder IF and/or I will? Sure I do. A very sobering thought and feeling.
However, in those same 11 years I have had other health scares that usurped my worrying about a BC recurrence. A few years ago, through imaging for a hip ailment, the radiologist found a 5 cm tumor inside my thigh that needed to be removed. So, I thought to myself...VR, here you were worrying about a breast cancer recurrence and this stupid tumor in your leg might kill you instead...
The damn tumor was benign and the replacement hip is wonderful.
So...I no longer worry about bc recurring. I don't care about statistics either any more. They are too fluid for my taste or experience.
As the DH, an engineer, will always say to VR when she finds a study about ANYTHING and is gently walking her back from the plank...Dear, it is ONLY one study...wait a day, there will be an other...
And most of all...stay SANE.
runor, I said "I wish there was some way to change the title to something more reflective of the current discussion". I very intentionally worded that as a wish and not a request or expectation. I know that the Mods don't change subject lines without author permission, and in this case, the author has not posted in two years or even signed on to BCO in 20 months.
muska is right in that nothing materially changes if the number is 20% or 30%. The fact is that for each of us as individuals, nothing would change even if the number was 10%. The 30% figure, or whatever the correct figure currently is, has no bearing on any of us as individuals. If we've had invasive breast cancer, we face our own individualized risk of metastatic breast cancer. For some of us, that risk is very low, maybe only 5%. For others, that risk is much higher, maybe 40%. So the 30% (or whatever) is meaningless, except for medical planners and researchers. That's why I don't understand the constant dredging up of this thread, or the obsession with the 30% and with proving the 30% to be correct. My obsession with the 30% is based on the fact that I think the subject line is fear-mongering click-bait. I spend a lot of time on this board writing posts to try to calm people down by providing rational, clear, hopefully accurate information. The subject line here does the exact opposite.
Bessie. Can I know your initial diagnosis. It is missing in signature.
I follow all your post and it is helpful
I took statistics at the college level. The first thing our professor told us was this saying:
"There are lies, damned lies, and statistics."
This was drilled into us over and over throughout the course. Statistics gives us sets of raw data, the problem is with the interpretation of the data. It is not as straightforward as some people assume it is. Hence the saying.
Anyway, it's important to remember that statistics, or medical science, rarely has the final answer to anything. It's all a moving target and a work in progress. I am comfortable with taking all statistics and projections with a grain of salt.
Beesie, while i appreciate that many newbies need to be talked down from panic and reassured, I'm actually disturbed by how many women go through treatment for early stage and have NO CLUE about recurrence risk or that stage 4 is terminal. Literally have had women say they didn't know it could come back, because the drs. don't use the word 'remission' anymore, but rather they're told they're cured. Many don't know what symptoms to monitor for when looking for recurrence and again, some have no idea that stage 4 is fatal and has a pretty short survival time.
Also, knowing that there is a population risk of recurrence and that metastatic recurrence is fatal is IMO critical to moving 'breast cancer awareness' campaigns beyond the pom poms and "I survived!" cheerleading. We stage 4 people have limited time and energy to mobilize for effective treatments that actually prolong life. We need our early stage peers to take that up on our behalf and I think one reason they're not is that they have no idea of what the risks are.
So there's a time & place for what I think is a 'reality check' on this disease, and recognition that early stagers can go on be be one of the 41,000 people in US who die of breast cancer each year & that we're still not very good at predicting who will and who won't.
Moth, I 100 agree with everything you said and have said on this thread. You said it much kinder than I was going to say it.
I was told by my first oncologist that I'd be CURED. Whoops. This thread actually is what got me to research recurrence and metastatic risk when I was poking around the forums early stage. Nobody told me anything I read here. Doctors, nurses, therapists. Everyone was too busy talking me down. Maybe if everyone had been honest and ditched the pom poms and things had been explained to me in the beginning I would of done better coping with my early stage diagnosis and my soon thereafter metastatic recurrence. Thats what makes me grind my teeth. Lack of information and transparency. Too many women as moth explained dont understand things they should. I feel ultimately I was only semi prepared for what happened because of my own advocacy.
I appreciate the fact that statistics for the entire population and one’s own individual risk are very different. In fact, one way I retained hope that I might not die in two years after my Stage IV diagnosis was by hanging on to Stephen Jay Gould’s story and particularly this quote: The median is not the message.
With that said, I support the point that moth is making. In the first few weeks before my mets were discovered I was told by my BS that my (supposed) Stage 2 IDC was “very curable”. My mets were only discovered because a breast MRI (only breast, we weren’t looking for metastasis) showed something that looked like a lung nodule so I was referred for a PET scan, and the rest is history. My “curable” Stage 2 was really Stage 4.
My MO confirmed that I would not have gotten any imaging of the rest of my body had it not been for the suspected lung nodule. I would have been treated as a “curable” stage 2 and after a year I would have gone off Herceptin. I had NO symptoms of any kind other than my breast lump. Yet I had moderately widespread bone Mets.
That caused me to think about how easily mets can be missed and I read on Komen’s site about the 30% stat. In trying to avoid “futile” imaging how many cases are missed? I don’t think giving everyone a PET at diagnosis is feasible but what moth says about monitoring for symptoms (and making sure our doctors take them seriously) is important
Gee, I keep telling myself that I won't post here again, and then...
Come on, moth, what you are raising is a completely different issue. Don't misinterpret what I said to imply something completely different.
I said that I try to provide newbies with "rational, clear, hopefully accurate information". It means talking down someone with a new Stage I diagnosis who thinks she won't be around to see her 5 year-old child enter 1st grade. It means reassuring someone with DCIS who is desperately looking for long term survivors who had a similar diagnosis. It means explaining to someone with a 5 Oncotype score that no, she does not have a 30% risk of recurrence. It also means telling someone who thinks she can't develop mets because she had clear nodes that, no, unfortunately she can develop mets despite having clear nodes. It means ensuring that everyone understand that no matter how low their risk of mets, they do have a risk of mets, and they must remain vigilant and should never ignore any symptoms that could represent a recurrence. Do you know how many times I have posted exactly that?
I know that many doctors aren't honest with their patients. Some over-estimate risk in order to push patients into treatments; others under-estimate risk, misleading patients into thinking they are safe from recurrence. Some even do both. "Without taking the AI you are guaranteed to get a recurrence but if you take the AI you'll never have to worry again." Where in my 11,117 posts (I need to get a life!) have I ever said or even implied it's okay for any doctor to lie and/or mislead his patients? What I've actually posted about those doctors is that they shouldn't be allowed to practice.
Not wanting newbies to panic over a total population 30% risk figure doesn't mean being dishonest about the risk that they actually face. Quite the opposite, in fact.
This is an awesome thread with awesome talk!Beesie, I may have been clunky in my delivery but I was and am in agreement with you. A short note added by the mods, not a change but an add, would clarify things a little. I know you were not suggesting editing. Sorry that I was unclear about that. The 'writer' in me obviously can't write very well! I think it would not be difficult at all for them to do this. In fact I have seen it done in numerous other threads
I am shocked, SHOCKED by the women I talk to who seem to have a very fuzzy view of their breast cancer situation. Is it the fault of doctors? Sometimes yes, sometimes no. If you are a doctor and have before you a patient who clearly and plainly does NOT want to hear the truth, know the stats, grasp the situation, is it your job to FORCE them to look at reality? There are people who have lived their whole lives without once making acquaintance with reality. Is it your doc's job to be the guru that makes you awaken, especially when being asleep is ever so much easier and less jarring than knowing the truth and learning how to live with it? For example, my mom, when someone asks her how I"m doing snaps, she'll be fine! And the conversation is abruptly ended there. Over. Done. Even if I am sitting right there! I am not allowed to answer. There is no outcome allowed other than me being fine. Period. Of course we all know that while I appear to be fine at the moment, there is a whole lot of unknown that might be NOT fine. I don't know. I might be fine for 2 more years then suddenly not fine. We don't know. I have been a statistical anomaly once. Will I be again? We don't know. So, if a patient is happy to walk out the door thinking they are cured, should a doc grab you and alert you to the fact that, well...maybe you're not? Because I want to be honest and clear without repeating an essay to people, when they ask me how I am I say, "good. For now." Which is the truth, the whole truth and nothing but the truth. To the best of my knowledge, at this moment, I am okay, but I fully acknowledge that cancer is cancer and a slippery SOB and at any moment my bubble could burst. Yet I meet women all the time who tell me they're cured. I think, lucky you. Either lucky that it's true or lucky that you believe it. Wish I had that peace of mind. I do not.
Buttonsmach, the very first thing that was said to us on the very first day of our statistics course was "Never believe a statistic." That is the ONLY thing that has stuck with me from that course.
Runor - I have so many acquaintances - and even friends - who don't want to look at what might come. The answer is the same as your Mom: "I'm fine". Nor do they really listen to their docs so they have no idea even what their planned surgery or treatment is, let alone their diagnosis When you ask for example if they're ER/PR positive, they don't even know what I'm talking about. Head in the sand...
I'm older than many of you. I wonder if this is partly a throw back to my parents and grandparents generation. They believed that doctor was "god" and you never questioned or asked them anything.
Minus, I have a friend who was diagnosed and called me to talk and I was so glad I could be a listening ear for her. But when I asked her for information, she knew nothing. It turns out her situation was far more critical than she let on. But I think she had no concept. Just as you said, her approach was 'doc knows best.', which I consider an abdication of responsibility. Doc may know best and I will take his opinion into consideration, but I will gather my own information and make my own decision. In all our talks she has never talked about her recurrence risk. I think recovering from surgery, infection, a long chemo and then radiation has taken her focus for a while, and rightly so!Sometimes I wish I had chosen ignorance as it truly is bliss! Knowing, thinking, worrying, writing wills, medical directives and getting rid of unworn jewelry and all other life junk, is tiring. Never feeling like I am truly safe, is tiring. But I never was safe. Never was! I was always subject to death. At any moment. It's just that I didn't think about it fulltime and now can't stop thinking about it (which frankly is what I think has happened to the entire planet, it has had its possible demise shoved in its face, even though the virus risk is small to most people, and they have collectively FREAKED OUT and thus laws and rules and restrictions that have nothing to do with stopping disease but with making us think we're doing something to stop death, because thinking about it is making the planet crazy!)
Because I am a realist and want the truth, this thread is on my fave list. The title alone forces one to look at and consider the situation. As Beesie says the information might not help us feel better, but at least everyone here will leave with no wool over their eyes. Beesie and others try to remove the sting, provide perspective. But the truth is the truth and I am the sort who needs to know it. As everyone else here does. I am grateful.
runor and all, if cancer diagnosees (people who are or have been diagnosed with cancer -- it might not be a word but it works here) aren't aware of their recurrence risk, it might be for any number of reasons. I thought my doctors were fantastic. I had/have care through a highly rated cancer treatment center at a major research hospital. They are (the BS, MO, RO) kind, clear, and respectful. They all answered questions I had as directly and carefully as they could. But not one of them brought up the subject of my recurrence risk, in terms of stats or any number. Now, with triple negative, I didn't have an Oncotype number to refer to. And I had, thanks to this board and info here, looked up the Predict numbers on my own. So I also never asked. Who was at fault there? Me for not asking, or them for not bringing it up?
It's easy to imagine patients not asking, not understanding, not hearing because of their fears and being overwhelmed. It's easy to imagine a team of doctors where somehow, each of them expects the other to raise the subject.
I think recurrence risk should be discussed at outset, when deciding on treatment. IMO, otherwise it's not informed consent.
But clearly not all MOs see it that way. I think it is more often discussed more obliquely as "this treatment reduces your risk of recurrence by x%" but if they don't actually tell you the baseline risk then how are patients making these decisions? It's really baffling to me to not be presented with the reason for why a certain treatment plan is being recommended and what the anticipated, evidence-based benefit of it is.
& it should be discussed again after treatment is over, when discussing symptoms which require attention. But again, many patients report not being told what to look for or why. It makes me very frustrated.
Interesting Mountain Mia. Who is at fault? I can't fault the docs for not emphasizing something that the patients don't want to hear. And lots of people just don't want to hear bad news. Or even hear any details. Like Runor - I want to know everything up front - but I know I am in the minority. And not to change the subject, but that is why I so appreciate the research & graphs that Beesie provides to the newbies.
There are also folks who are completely uneducated about medical and anatomical stuff, some of whom are not capable of understanding much of the detail
Yeah, I think it should be expressed. I guess for me, there weren't really "alternatives" presented. Again, triple negative. It was more presented as the plan. You'll have surgery, you'll have chemo, you'll have radiation. There wasn't maybe a lot of point in talking about risk reduction. For ME, I never assumed this was "cure." I always understood that the point was to kill it if possible, but that might not happen, and if it didn't, likely bad things would happen. But no one there actually said that to me.
I agree so much with you ladies on needing clarity about our risk. I am definitely a person that needs to understand all the information. I have a sister on the other hand who chose not to ask questions about anything. She placed all the knowledge and strategy in her oncologist's hands. It has definitely worked for her as she is 22 years out from a stage 3 diagnosis (yay!). We are all so very different in how we approach our disease. I have to know the how why what if . . . .