Will 30% of Early Stage (1-IIIA) go on to metastasize??

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.

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 As Beesie has so eloquently stated, the stats are hopelessly outdated and then the uniqueness of our individual diseases muddy the waters.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.

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.

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!

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'm sorry I can't stop laughing at Runor's cookie )

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...

Stay safe.

Stay well!

And most of all...stay SANE.

Bessie. Can I know your initial diagnosis. It is missing in signature.

I follow all your post and it is helpful

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.

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.

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.

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.

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

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 . . . .