Feeling "fooled"...

I can't seem to get the link to the bc.org thread I started to work, but if you wanted to read the comments you can look up the thread in the search engine here:

Charla Krupp-Fashion author & commentator-Dies of bc 

Heather, I thought the initial diagnosis appt went well.  What struck me was the appt to discuss my options.  The tone was far more serious, after they'd pinpointed the type.

This is a really interesting discussion for me.  My opinion is, I think we fool ourselves to some degree when we accept our staging as totally correct.  The medical field admits the staging system is outmoded.  Oncotype has been a step in the right direction--it is certainly throwing a wrench into the general understanding of grade status, for starters.

This is scary for those of us who have had all the treatments including chemo, too.  All you have to do is a little reading to find out that studies suggest chemo only works when timed appropriately, and they aren't quite sure what that timing is, exactly.  

The statistics are clear that Stage 1 and 2 have better prognosis than later stage cancers.  But I think what is also becoming clearer is there are many shades of grey in the early stage cancers, many things left to uncover.  I'm not inclined to dig into Ms. Krupp's history, because I have truly accepted that while I have moved forward, I am never safe.  I probably won't die in the next five years--the statistics for Stage IV are not comforting and I think it's a disservice to our sisters to pretend I'm at the same risk as later stage patients--but I accept that anything could happen. 

Can someone pipe in here:  I have read on these boards you don't jump from your original stage to Stage IV, that you remain stage at diagnosis with mets.  Any clarification on that? 

Hi,

I was fooled to believe that my Stage I was not coming back but it did in about 4 years.  I had clear nodes and still do.  My ILC came back to the same breast and even popped thru the skin.  My BS says I'm stage 3 but my onc said it is 4.  Now I spend every day and night looking at my skin trying to see if its back.  It is exactly the same kind as I had in 2006, PILC and very ER++.  I have changed my life choices now and don't drink any alcohol,  eat very little meat and maintain a weight of 130 for a height of 5'6".  Everyone has always told me that I look so healthy.  I have had 2 genetic tests and they both came back negative.  BC is sneaky and once you have it, you need to alway watch for it to return.  I went thru a very depressed stage but now I'm enjoying each day and looking forward to many more.  Afterall, no one knows how long they will live.  At least we know what is chasing us, ha ha .

Good question....I asked my onc and he said that any recurrence to the skin makes it 4.  I'm going with my breast surgeon who said that the skin made it 3.  My oncologist is a glass half empty type of guy.  I have never had my PILC show up anywhere except in the left breast.  I have had PET scans, MRI's, CAT's, Ultrasounds, Mammograms, etc and it only shows up in the left side.  Thanks for asking!

The Oncotype testing is only done in the US at present, so the rest of the world relies on grade. The grade is the SPEED at which it grows, not the recurrence rate. There is no recurrence rate, it's all a crap shoot!

What was your Oncotype? THAT is what determines whether you do chemo or not if your team uses it as standard protocol.

My oncotype was only a 9 and I had a recurrence.  It's all a crap shoot!

LtotheK,

You are right....

I think for the sake of brevity on this site women stage themselves 4 but officially that is incorrect unless the ORIGINAL diagnosis was a 4. Otherwise you're the original stage with bone mets, or liver mets, or whatever.

"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."

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

(This matches everything I've found in the literature as well.)

Incredible link!!! Who knew???????

Yes, that is fascinating and thank you so much for the clarification.  I'd seen it mentioned here, and was confused.

I get a little bored when my oncologist always reminds me how "excellent" my prognosis is.  After all, my prognosis was excellent BEFORE I got BC.  No family history, young age...my only real risk factor was dense breasts.  I still probably had a less than 2% chance of getting it when I did.   When I compare that to the 8% chance I have of recurrence over 10 years, well, like I said:  I live my life to the fullest, and don't make any false bargains with stats.

MJLToday - That's so funny about doctors' egos. Many years ago I went out with a guy who broke my heart and later became a doctor.  I looked him up recently on Facebook and there he was in his photo astride a huge motorcycle wearing scrubs and flexing his biceps.  What does that tell you about his ego.  I notice he didn't have many friends.

 In my case I think I projected my "I am cured" wish upon my doctors who didn't actually say anything like that.  I just assumed it, but now I know different.

I think what a lot of folks overlook is the fact our chances of a secondary primary are rather huge over the long haul.  I've heard estimates of 1% cumulatively per year, give or take.  This is vastly larger than my risk of recurrence over the next 20, for instance.

With each new cancer comes a new challenge.  No one promises that my next cancer will be node-negative, ER+, etc., etc.

It is for this reason that the concept of "cured" just seems silly to me.  Cured would be eliminating my risk of fatal recurrence in the old tumor, and any new tumors.

"our chances of a secondary primary are rather huge over the long haul. I've heard estimates of 1% cumulatively per year, give or take. "

Yes and No.  For many of us - possibly for most of us - the risk of a new primary breast cancer is greater than our risk of recurrence.  Anyone diagnosed with BC one time is considered to be higher risk (than the average women her age) to be diagnosed again.  What that risk is depends on the individual. In my case, with a diagnosis of BC at the age of 49 and with a bit of family history of BC and related cancers, my oncologist told me that my risk was about double the average of someone my age. Right now I'm 55; the average 55 year has about a 9% - 10% lifetime risk, so my risk is about 18% - 20%. This is my risk for the rest of my life, through to the age of 90.  It works out to be a risk of just over 0.5% per year.  Of course, for all women, breast cancer risk increases as we get older, so that 0.5% annual risk actually is a bit lower now and every year it increases slightly. However my average annual risk over all 35 years of my expected remaining lifetime is still just over 0.5%. And the 18% - 20% risk that I face today will never increase - it will actually go down every year. The reason is simple.  For every year I live, I have one fewer year left in my 'remaining lifetime'.  So using that 0.5% average risk per year, it means that for every year I live, my lifetime risk goes down by 0.5%.  The idea that breast cancer risk increases cumulatively as we age is something that is repeated on this board all the time, but it's simply not true. 

As for whether or not early stage BC can be cured, I agree with what otter said a couple of pages back. Most women with early stage BC are 'cured' but unfortunately because the risk of recurrence remains with us for life and there is no way to predict who will recur and who won't, there is no way that we can ever know for sure whether or not we've been cured, at least not until we die (at the age of 90 in our beds with smiles on our faces) of something else. But the way I see it, if you have BC, that BC is treated and you never have a recurrence, you were cured. Developing a new primary BC is different and separate. You can be cured of one diagnosis but still get a second diagnosis.  If you want something that not only cures your current diagnosis but eliminates any further diagnoses, then you aren't looking for just a cure, you are looking for the elimination of the disease. That's a whole different ballgame.   

Beesie, that is very helpful!  That statistic, 1% per year, was straight out of my radiation oncologist's mouth.  Not that our doctors aren't misinformed!  I talked to my doc yesterday about the fact that I have high circulating estrogen, and that put me at greater risk down the road.  She said, "Tamoxifen takes care of that."  Well, not entirely.  The studies show it means I have a larger chance of recurrence.

I guess at the end, you just can't worry about every little detail, we are not in control.

Interesting semantics re: cure, and good to think about.  Yes, to me a cure means elimination of the disease. A cure, by definition, is a treatment that cures the disease or condition.  I guess I subscribe to the idea that those who don't recur/get secondary primaries are "in remission"--my doctors refer to cancer in this manner.  Which means I am absolutely not cured, even of my first cancer.