How many go on to Stage IV?

ck55

Hey All,  Feeling a bit pessimistic today for some reason and just got to wondering if there are any solid numbers/percentages out there on how many of us Stage III people go on to Stage IV? is it inevitable?

Sometimes (like today) I just feel doomed. Like I am waiting for the other shoe to drop. It really holds me back from making some changes in my life (like trying to go back to work as a Medical Technologist).

Sorry to be such a Debby Downer, but I am just having a low day.

Thanks, Cyndi

MJLToday

Sorry you are feeling down today.  It happens to everyone, I'm afraid.

 First off, let's clarify the terminology.  Stage 3 doesnt' "go on" to Stage 4.  Your stage at diagnosis, in general, doesn't change.  Most people with early stage (1-3) breast cancer go through a period of no evidence of disease, or NED.  Some will then go on to have a recurrence, either localregional, or distant (metastatic).  Some people call recurrent, metastatic cancer "Stage 4", but that really isn't accurate.

Because there are so many variable, including the size of your tumor, the number of positive nodes, th treatments you received, this question is best answered by your oncologist.  If you want to try to research it yourself, you can put your parameters into Adjuvant Online which is an online calculation tool.

http://www.adjuvantonline.com/index.jsp 

GrandHillMom

I have never seen the exact percentage following all the treatments you have had.  Without any treatment other than surgery, 75 to 92% of Stage IIIA would have a recurrence.  That is why you did everything you did.  This lowers the chance of recurrence substantially.  I have read that about 30% of all BC patients have a recurrence, but that would include patients who didn't do all the things you have done.   Also, most recurrences are in the first two years after surgery, and the chances go down quite a bit after five years, which is soon for you. So you do not have to feel doomed.  The risk is real, but it is not inevitable.

 A really good book that discusses Stage IV, including predictors of recurrence and actions to reduce chance of recurrence is "Breast Cancer Recurrence & Advanced Disease--Comprehensive Expert Guidance" by Gordon, Shaw, Kroll and Daniel. 

Although I am one of the Stage III's who graduated to Stage IV, many more do not.  Hope your days get better.

everyminute

We all have those days, unfortunately, and all we can do is try to set the fear aside and live as normally as possible.  Just like everyone else does who havnet been diagnosed - who dont know what could happen to them at any point in their lives.

The only decisions that I allow my diagnosis to affect are "Is this something I dont want to waste my time doing?" and honestly any time I answer yes - I should probably not do it anyway - cancer or not.

I just opened my own business - something I probably woudlnt have dont that prior to being diagnosed. I design running apparel for survivors as well as for "normal" runners.  I am now doing what I love every day.  I consider myself an athlete and I work with other survivors as a personal trainer.  Some of those survivors are now running marathons too - cool!

I will put it like this - whether I am running a 5k (3 miles) or a marathon (26.2 miles) there comes a point in the race that I wonder if I CAN do this and I have to push through.  Sometimes day to day life is like that - we have doubts, we have concerns.

 However your question was are there statistics?  I am sure there are - but there are always people that beat those odds (one of the women I train is a 79 year old woman who had stage 3 bc with positive nodes 33 years ago) and there will always be people who should have beat the odds (stage 1 who recurs) - the statisics have nothing to do with you or me really.

ck55

Thanks for all of your responses. I do realize there are no guarantees either way. I could walk out my door today and get killed by a falling meteor . I guess some days I just get so damn sick of dealing with this flipping disease. There is definitely a loss of innocence after a diagnosis of this type. Oh the  good old days when these things only happened to other people.

Thanks again. You did help

Cyndi

GrandHillMom

MLJ Today, Not that it is really important to ck55's concerns whether it is correct to call metastatic cancer Stage IV, but the term "restaging" to Stage IV is very common usage, especially when discussing PET scans and other types of scans that detect metatastes.  So the stage can change after initial diagnosis, based on the new information.  For example, my second opinion onc. at Memorial Sloan Kettering stated that looking back, I was a Stage IV at diagnosis, but I was essentially NED as to the mets, which were probably microscopic at that time. 

KerryMac

For those days when I need a little reassurance, I read a couple of articles I have bookmarked -

http://www.reuters.com/article/2008/08/12/us-cancer-breast-idUSN1248209720080812

and another...

http://www.pslgroup.com/dg/25a522.htm 

I should add that both of these are old (5 years or so) and although none of us are ever "out of the woods" the odds are firmly on our side. Even more so for you being 5 years out.

diana50

My experience is this:

as long as i am NED; i don't get ahead of myself into the "what if"  if and when, i am told that i have more cancer; i will deal with it.  otherwise; i feel like i am wasting energy worrying about it.  i will know if i am sick again.  my body will tell me.  none of us are "out of the woods" it is what we deal with.  it is acceptance of a cancer history.  the thing is, it isn't your history until you hear it again from your onc.

keep on. don't give up

ck55

Wow Diana50, Thanks for replying. Your advice is very sound and means a lot to me, especially seeing that you are 9 years out!!

Very encouraging

 Cyndi

weesa

Cyndi, don't give this god awful disease from your past any power over your daily life. (Also, on a practical note, since you are er pr positive, get your estradiol level checked occasionally if you really want to know a big risk factor. Under 10 is very good.)

MJLToday

GrandHillMom, you are correct that sometimes doctors will look back at the original diagnosis and adjust it.  But as you said, I don't think that's what the OP was asking.  It's just a pet peeve of mine that laypeople, especially journalists,  commonly call all metastatic cancer "stage 4". 

Celtic_Spirit

I agree with Diane. And as for myself, I feel like I've done everything within my power--and medically possible--to slay the beast, so should it come back, I will be at peace. My perspective is like that of Andy Dufresne in Shawshank Redemption: "You can get busy living or get busy dying." I don't want to spend my life worrying about dying, I want to spend it living.

ck55

MJLToday, I guess I am a little confused by your response. If somebody diagnosed initially with Stage 1-3 and then a few years down the road mets are found somewhere else in the body (bones, liver, lungs, etc) are they not then a Stage IV?

Are you saying that the person was always a Stage IV, but the mets had not been found yet?

Am I wrong in thinking that anybody with bc that has metastasized is considered a Stage IV?

Sorry for the confusion

Cyndi

SpunkyGirl

I love The Shawshank Redemption, Celt!  Well, except for the bathroom scene.  I use his phrase all the time...

MJLToday

http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/staging

A cancer's stage does not change

An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed, only information about the current extent of the cancer is added.

For example, if a woman were first diagnosed with stage II breast cancer and after the cancer went away with treatment it came back with spread to the bones, the cancer is still a stage II breast cancer, only with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it is called a stage II breast cancer with metastasis in the bones. In either case, the original stage does not change and it is not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status.

This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

At some point you may hear the term "restaging." Restaging is the term sometimes given for doing tests to find the extent of the cancer after treatment. It may be done to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often this involves the same tests that were done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. Rarely, after these tests a new stage will be assigned, written with a lower-case "r" before the new stage to note that it is different from the stage at diagnosis. The original stage at diagnosis always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, although it is more common in clinical trials.

Celtic_Spirit

Risk for recurrence depends on so many things, and a lot of those things are as pertinent as your stage. The biology of your tumor--if it's hormone positive or not; if it's, say, a luminal A tumor as opposed to a basal-type tumor; your age at diagnosis; your overall health; your ethnicity; the treatments you received and how well you responded to them; certainly, size of your tumor and number of positive nodes are factors. Even the online calculators can't take so many factors into consideration when they tabulate your "odds."

I remember talking with a good friend who's a nurse after I was diagnosed. I told her that 30% of Stage IIIA women had recurrences. She explained to me that I was lumped into that 30% with women who were old, very young, had more aggressive tumors, who weren't compliant with their treatment plans, who had other health issues, who didn't exercise, etc. She said, "There isn't a statistic or category just for you." That made me feel better. I hope it helps you, too.

kira1234

What is luminal A tumor, and for the matter a basel-type tumor. I never saw that info on my path report. How would I find that info?

Celtic_Spirit

My path report didn't list it either, but I compared my report to articles I found on the Internet, and then discussed it with my onc. I've included a couple of links below you might want to check out:

http://www.breastcancer.org/risk/new_research/20090522.jsp

http://cancerres.aacrjournals.org/content/67/24/11565.full.breastcancer.org/risk/new_research/20090522.jsp

Megadotz

Kira123 --  These are other names for  combinations of ER/PR and HER2-neu markers.

Luminal cancers are  hormone (ER/PR) positive and basal are trip;e negative.  If I remember right Luminal A - is  hormone positive and HER2 negative , and Luminal B is hormone positive  and HER2 positive.

This link is about the interaction of these makers with treatment effectiveness.

http://www.breastcancer.org/risk/new_research/20080825b.jsp

Hope this helps.

pejkug3

I appreciate all the info in this thread.  This board is AWESOME!