Odds Of Developing Metastatic Disease

gbesq

I have read that about 30% and 75% of node negative and node positive patients, respectively, will eventually develop metastatic disease (info comes from the Physician's Desk Reference).  Does anyone know if these numbers are accurate?  They seem awfully high.  Thanks. 

Bren-2007

Which edition of PDR did you find this info?  Those numbers seem high to me too.  Did they say those numbers were over a certain period of time?

I wonder if the node negative numbers are that high due to vascular invasion, rather than lymph node.

Hopefully, someone will come along with more info.

Bren

barbe1958

I've heard them to be that high as those with node involvement tend to get treated more aggressively. Those of us with clear nodes, or like me, microinvasions don't get the full monty. They've actually shown that Stage I and II jump to Stage IV more often than Stage III's do! Makes sense. I haven't heard the node involvement to mets being that high though....

Susie123

Why do we early stagers get the oncotype dx test then?

cookiegal

I am probably biased, but I think those numbers do not tell the whole story. Not all agressive cancers go to the nodes, and not all cancers in the nodes are agressing. Maybe I am just fooling myself, since I don't like the info.

dlb823

gesq ~ Those stats do not sound right, unless they're possibly referring to women who receive no treatment.  Otherwise, I'm quite sure they're incorrect or based on outdated information.  What year is your PDR??   If pre-Herceptin, Tamoxifen, Oncotype-DX, etc., I suppose that could explain it.

IMO, it's difficult to lump all node negative or node positive women together and come up with a meaningful stat.  But here are some studies and misc. articles that may help put things in a more current and realistic perspective:

http://ww3.cancer.org/docroot/NWS/content/NWS_1_1x_Study_Quantifies_Risk_of_Breast_Cancer_Recurrence.asp

http://www.lifeabc.org/risk_recurrence_more.html

http://www.usatoday.com/news/health/2008-08-12-breast-cancer-relapse_N.htm (not a scientiic article, but contains a chart from the NCI)

Susie, I believe early stagers get the Oncotype-DX test because the genetic components of each of our bcs is different, and in cases where the genetic makeup of our bc shows a very low risk of recurrence, then the risks associated with chemo outweigh its potential benefit.  On the other hand, Oncotype-DX will raise a red flag when there are genetic factors that increase the risk of recurrence for someone who otherwise has stats that might not appear to merit a recommendation for chemo. 

Deanna

Leah_S

Those stats sound suspicious to me, too. My onc told me that after surgery & before chemo and rads I had a 50%  chance of mets, and after I had a 20% chance.

I was in the 20% group. So for me, it's 100%.

Leah

Cathy-CA

I attended the Living Beyond Breast Cancer conference for women with metastatic cancer in May of this year and the number used there was 30% total.  I don't know what percent of women are node negative, but if it is way larger than the number that are node positive, it would be possible for both numbers to be accurate.  Not to scare anybody, but I have read many times that the lifetime risk of recurrence is 50%.  The problem is a lot of statistics only track five year or ten year recurrence numbers.  Now, not all of those will be metastatic, but it makes the 30% seem pretty likely.

chasinghope

DLB those are great articles, thank you for taking the time to post them.

Those numbers do seem rather high. There is so much misinformation out there it's scary. Okay, frankly, it's scary anyway but it would be nice after all these years to have some answers. Seems like they have been some breakthroughs but still amazing that there is no cure. There is so much money getting seeped into research, but then one has to wonder, if it's more beneficial that there is no cure for cancer. It's making a lot of people rich!

dlb823

For what it's worth, I just figured out that the second link I gave you is actually a Novartis affiliated website.  It had sounded extremely pro-Tamoxifen to me -- to the point that the stats didn't quite agree with those in the other links; and, obviously, that's the reason why.  Rather than take it off my post, just be aware that it's kind of stilted to sell the benefits of Tamoxifen.  It's also interesting to note that they felt the need to create a separate sounding "organization" to hype their drug.   D.

P.S. chasinghope ~ I don't personally buy into the "conspiracy theory" re. the illusiveness of a cure.  But I am frustrated to see millions of dollars that are given to help find a cure actually going to bigger and better "Breast Cancer Awareness" campaigns  -- as much as 80% of what some organizations raise.  (Sorry to go OT, but I just had to comment.)    D

diana50

after 8 years of looking at statistics...worrying about progression....looking at research...listening to breast cancer survivors....i have come to the conclusion that....either i am NED or i am not.

it makes it so much easier then trying to second guess the percentages...there is no answer to who "for sure " will end up with mets...and who will not. 

either i am clear...or i am not. for me, that is the major issue..not my chances...not percentages..i think i have spent too many years...especially right after treatment worrying about relapse.  i don't want to be disappointed but i dont want to live my life in fear either.

 it is rough being a cancer survivor.....you just never know...but...when you really think about it....we really never know about much of anything ...except each day we live.

barbe1958

I've said before that really, your chances are 50%. You either get mets or you don't.

Did you know that the oncotype testing is only done in the US? It is a US patent and they handle the US patients first so it takes 6-9 months to get an answer from anywhere else, so it's not worth it. Also, the oncotype testing is done only when Tamoxifen is considered. So, for someone like me, post menopausal, HER2- (no Herceptin for me) there wasn't a lot of choices. I'm ER/PR+ as well...

And even with micromets to my nodes, which is such a controversial subject, I still didn't get anything other than surgery! My doc said to "Save the big guns for next time!" Duh.

At first I think we all dwell on recurrence or mets, but it does get easier with time. Other diseases start to creep to the front line....

She

Hello friends!  I just celebrated the 14th cancerversay of my first BC, I was told I'd be lucky to make it to 10 years.  I'm 9 years out from my second BC and almost one year out from my third.  I've crammed 33 years of cancer into 14!! lol's

What I've determined over the years is the possibility/probability of recurrance, new cancer, or mets is a total crap shoot.  You don't get 30% mets, either you get mets or you don't.  The statistics are just that, statistics.  There has been much controversy about how they're established.

The best advice I can give anyone worrying about statistics is:

"Go out and live your life and stop worrying about it.  It's a waste of time and emotional energy.  Be prudent in watching symptoms, follow the two week rule.  Do not allow yourself to obsess."

With my bilat mast & DIEP recon last year, they did not get a clear margin against my chest wall, and it's subsequently inoperable.  I've had no further treatment (I don't consider Stage 2 revision a treatment). If it comes back it will be chemo or whatever is available to me at the time.  I've already had AC.  I do not spend my time worrying about something I have no control over.  I have far too much living to do and I don't let anything get in the way of life! 

Very few of us get our old lives back.  BC changes things.  But that doesn't mean life can't be fantastic!  In order to fully experience extreme joy we must also experience extreme sorrow.  Accept the sorrow of BC then set it aside, go out and actively seek the joy of Life!

Even before BC, never in my wildest dreams could I have imagined my life today.  When times get rough I put my big girl panties on and fight my way through.  If I can do it anyone can!

Char2010

Hello She - I LOVE your attitude and need to work on mine.  I finished chemo mid-June and will be starting radiation next week - and I feel very down most of the time.  If it was not for my job keeping my mind occupied I would go "crazy".

rreynolds1

Why are we having this conversation?  We are all doing what we can and we can't solve a problem we don't have yet.  Let's not get into the worry  mode unless we are suggesting a change in treatment to change the odds.  I was told that my chances were 15% for recurrence in 10 years and that was based on my general health, my age, the results of my oncotypedx test and my course of treatment.  This conversation doesn't serve us.  It is bad enough that we have ingnorant outsiders giving us unbased fears, let's not do it to ourselves.

Roseann

thegoodfight

She and Roseann,

Thanks for pulling us all back (well at least me) to our reality.   My first thought was that wonderful Serenity Prayer.   I am going back to  accepting the the things I cannot change, changing the things I can, and having the wisdom to know the difference.  

Thanks for sharing your wisdom.

Caren

HappyTrisha

Once I finished all of my treatment (since I had an "aggressive" cancer, I had lots of "aggressive" treatment) I made the determination that I was not going to have a recurrence.

I've lived happily ever after.  I don't bother myself with statistics or anything else of the sort.  I live the life of a happily cured person.

Try it. You might like it.

thegoodfight

That's exactly what I am saying although as I reread my own post I guess it was confusing.  I simply meant I am not going to dwell.  Intellectually I know it could happen again, but I too with aggressive cancer did agressive treatment.  That was the "changing the things I can" part.   Now I live my life.   Yes, I think about it when I get an ache or pain, but I know I have done what I needed to do.  All any of us have is today, so let's enjoy it.  One difference is I do not use the word cured, because I know that is not cancer's reality.  I am NED and loving it.

Caren

HappyTrisha

Caren, interesting, and I certainly respect everyone's views on how to look at life.  There is no "one size fits all".  I use the word cured because my brother who is an ob/gyn explained to me early on that cancers found early are considered curable while later stage cancers are considered treatable rather than curable.  I lived cancer's reality from December 2003 to January 2006, when I had my reconstruction,  Now cancer is living my reality.  Since I don't intend to have a recurrence, I am indeed cured.  That is my reality every day of my life. 

Trisha

(I have to admit I had a head start on all of this.  I have always made lemonade from life's lemons, so that I would be viewing my situation this way isn't at all surprising to anyone who knows me!) 

barbe1958

And here I thought we were having this conversation because gbesq posted a question on a discussion board!

Gotta say, if you don't like the topic, move on to another one!

This is gbesq's thread and if you don't want to participate, post a thread of your own.

momand2kids

gbesq

I completely appreciate your concern.  I am not sure how far down this road you are--- I found that these questions erupted for me after my treatment ended and I had to have information..... I have also found that that need has subsided..... you may or may not have that experience. 

Statistics are helpful- and I always am interested in the stats that support MY position (lol) and I try to ignore all others..... that might not work for you, but I have found it helpful and,as I mentioned, my need to KNOW stats has subsided..... 

Ithink the question you have posed is one I am sure we have all considered or talked to our oncs about.  I think the answer is probably different for everyone when you take into account stage, grade, type, health, treatment.  For me, that answer is 9%--- I have a 9% chance that this could possibly return.  For me, I figure I have a better chance of getting hit by a car..... 

I don't want to make light of your question--I think you need to find the answer that works for you---because that is how you will reassure yourself when you get anxious about the future.  I think you will find that answer.

Early on, when I told someone about the 9% they said-"so now you get to live in the 9% or the 91%"  right then I decided to live in the 91%.  But, it took some time to get there.  Like others, I consider myself cured and understand the possibilty that this could return, but I am sooooo not planning on that!!!!!

be well

CoolBreeze

HappyTrisha, you and I have the same attitude.  I'm still in treatment and am being tested for recurrence but I feel like I'll be okay.

I have often thought that when my treatment was done, I'd call myself cured and be done with it.

But, for me, calling myself cured won't mean posting on cancer boards years out..  I'm curious why you are still here six years after you were finished?  I'm not saying that to call you out or challenge you - I just wonder if the experience is as much in the past as you say it is, or if there are other reasons? 

littletower

momand2kids...you made me cry...in a good way.

dlb823

I think the topic is one we all wrestle with at some point in this journey, and I think it's a very valid one and one that needs individual exploration and closure. 

One of the things that helped me get beyond reading stats was getting all of my tx behind me.  I took huge emotinal leaps forward with both my Stage II Diep surgery, and then when I had my new nipple made a few months later.  For those of you still in tx, once it's all behind you, you will honestly be able to turn your attention to the future and see more of the light at the end of the tunnel.

The other thing that helped a lot was realizing that so much of today's tx wasn't being done 10 or even 5 years ago, so any charts or stats giving us 10 year survival are based on women who did not have our txs, whether that's a third-generation chemo regimen like TC, or Herceptin for Her+ bc, or the A/I's.   And new research also shows that things like exercise, for example, can greatly impact our risk.  So there are just so many factors that make those charts not worth stressing about.  But I think each of us has to go through the process and come to those realizations for ourselves.    Deanna 

barbe1958

Sometimes it's just a matter of facing the "devil you know" rather than the devil you don't. Give me the challenge to face and I can face it.

Sunflowers is quite right though, being node + or - has no bearing on recurrence rate. It does have a bearing on treatment protocol though. So as I said above, stage III ladies are usually treated more aggressively than earlier stages.

We are all just one diagnosis away from stage IV. As Dale Carnegie would say; what is the worst thing that could happen? What would you do if it happened? Okay....you've faced your worse fear and have considered how it will impact your life. To most people, those of us on this board have already face what most people would consider the worst thing to happen; a cancer diagnosis. So you see, we are already leaps and bounds ahead of everyone else. 

HappyTrisha

Cool Breeze, I am here because I believe in giving back.  When I was going through treatment this board served as a wealth of information for me.  I also got to know quite a few women who were either ahead of me in treatment or going through treatment.  I come here to check in to see how they are doing.  In the process, if I find a thread I consider interesting or find a question where I feel I can be of help, then I put in my two cents for whatever they are worth these days.

I would think that seeing someone who is six years out could serve as a positive thing for others who are now going through treatment.

If my experience were not as much in the past as I say it is, I would be here trying to find others to make me feel secure.  Feel free if you're bored some day to read through any of my posts from the past.  I think you'll find that I am who I say I am (cured and thrilled).  

By the way, when I was going through treatment I referred to my breast cancer as a temporary inconvenience - and truly saw it that way.  People go through all kinds of things in life.  One in 8 is pretty high odds.  So I was never the "why me?" person.  I was the "why not me?" person.  Glass half full, silver lining in every cloud, yada yada yada.  It's just who I am.

HappyTrisha

Sherri, it is so nice to see you too!!!  Didn't you have some kind of business where you sold things you made?  (or maybe you just liked crafts?)  I swear I remember that!  It makes me so happy to see sisters who were here in the past.  It's like we're all part of a very special sorority.

Life is good, God is good.  Keep fighting that good fight Sherri!  Hopefully I will be seeing you around.

Trisha

CoolBreeze

Thank you Trisha, I'm glad you didn't get upset at my question, I feared I couldn't phrase it right.  I was truly curious.  I think it's great you come back to give hope to women.  More should do so!  Especially those who have your attitude.   I'll have to reconsider my idea of never wanting to be involved in anything cancer again.

A friend of mine is celebrating her one year cancerversary and wanted to know what she should get to celebrate it.  It was a question that nonplussed me, because I hadn't thought of  it as anything to celebrate, or as a way to mark time.  But, now that I think about it, maybe popping in on these boards and giving hope to women newly diagnosed might be the perfect way to "celebrate.."

Now, we've gone really far afield on the original topic, haven't we?    Sorry about that. 

navygirl

I think dlb hit the nail on the head for me...I opened the thread because, for me, it's a topic that has been in the back of my mind since I was first diagnosed and comprehended what now lay ahead of me. Does the fact that my mind tried to consider the worst case scenario, instead of automatically look for the silver lining, make me not as good a person? Not as "strong" in dealing with this beast? Somehow less "blessed" than those who are just happy, go lucky people that are able to take everything in stride? Not at all; it means that just like everyone else, I have my own journey and my own unique way of getting there. For some of us, that means thinking we are cured. For others, that means considering ourselves NED unless we are told otherwise. Some of us want to and maybe even need to discuss these things, even if only once. Some of us want to discuss them, but can't discuss them with our friends or family out of the fear that we'll make their minds go somewhere they don't want to go.

I think it's bad enough that we have to carry a weight that no one else in our day to day lives may truly be able to understand, let's not shut someone down when they start a thread that others may just as soon not discuss. In that respect, I'd have to say barbe hit the nail on the head...no one has  to participate. 

Trish...I respect your outlook, in many ways, I even envy it. This isn't the first hurdle that I wish I could have jumped without looking back. Those of you that have gone before us, that come back around to check in and offer a different perspective, are usually the ones that keep the fear at bay those of us who need the reassurance. I know I'm either going to have a recurrence, or not - what I'm still trying to get my head around is when I should worry and when I should chalk a new ache up to the natural course of ageing. When is a backache just an old injury acting up, and when is it mets? I liken it to being a lot like getting over abuse, it takes a long time to stop flinching. I know someday I will...I just don't know when.

thegoodfight

Thanks Navygirl for your post.  I knew I was feeling "something" that made me uncomfortable, but I didn't know how to express it, which is unusual because I am famous for talking.................lol.   But you nailed it for me when you said that we each travel our own journey and although I respect and yes even envy those who can live every single day with their glass half full, I should not be feeling inadequate if I can't.  I know Happy Trish meant only good things in her posts, but truth be told, I was feeling a little beat up and weak for finding myself worrying sometimes.  I am me, and I am okay with that.  But I do agree it always helps to hear many points of view.  It is also interesting that you made the comparison to abuse.   Many years ago I regularly attended AlAnon meetings to work through life with someone who was in AA.  I am happy to say we are now dealing with that person having 30 years of sobriety.  But you made me remember a very important part of support groups that they always said in closing the meeting.......................take what you want and leave the rest.   I hope everyone keeps posting and individually we take what will help us on our journey.

barbe1958

I consider myself a very happy person and took everything in stride, so much so, that people at work thought I was kidding until I returned after being off for 2 1/2 weeks and had no breasts!

That being said, I can still talk about recurrence and mets and other horrid topics without thinking my halo is slipping. It is a reality we are all facing and some will meet that reality and some will not. I think it's very healthy to talk about it and we need a safe venue to do so and, ta da, here it is!

Well said Navy....