Understanding Early Staging

Hindsfeet

This is a hot topic for me because early staging is all over the boards and is seemingly very confusing. Those who have micro-mets to invasive fall under the stage 1a that is if you are node free. I have been told that staging is for treatment. But, I learned that some stage 1a requires chemo and others do not. Some are treated more like DCIS. There are those who are stage 2a that are similiar treated to those of stage 1. For our sakes, I do think early staging needs to be redone. I feel that way for stage 0 as well.

Those who are given stage 0 or stage 1a assume that they have the good cancers, easily treatable. In staging they don't include the her2+ factor.

Although Beesie has done a great job in explaining this on other threads, I feel there needs to be a thread where we can discuss early stage staging...why, what and etc especially in regard to treatment differences for the same staging. Early staging can give false hope that you are cancer free and early staging risk factors differ for stage 0 through stage 2.

SpecialK

eve - I think "cancer free" is a misnomer, and to buy into it is naive.  Anyone who has had a cancer diagnosis does not know if they are cancer free unless and until they are diagnosed with a recurrence, or die from something else.  I am sure with every surgery you had for your several different cancers you thought you were "cancer free" afterward.  We all have seen ladies with early stage cancers recur rapidly, or many years out from their original diagnosis.  The best we can hope for is "no evidence of disease" based on imaging and other tests.  Early stage is an umbrella term and treatment for stages 0, 1 & 2 can and should be tailored to the patient.  I am considered early stage, but there was never a question that I would receive chemo and Herceptin because of the aggressiveness of grade, Her2+++ and positive nodes.  Some with my same pathology might have had rads but both my BS and MO felt it was not necessary since I had axillary dissection and a BMX.  Others had lumpectomy/rads/chemo/Herceptin, and still some others had BMX/rads/chemo/Herceptin.  If you are realistic about an early stage diagnosis you will not assume that you are "cancer free" but instead hope that with appropriate treatment you are lucky enough to be NED. 

voraciousreader

Eve... I was never given the impression that my prognosis was good based on being Stage 1. Your treatment protocol and prognosis is based on your stage and the characteristics of your tumor. Whether you have positive nodes, the size of your tumor, the Grade, histology, as well as hormonal status will all factor into your prognosis.

I really wonder what exactly the context was when your doctor said to you that you were "cancer free .". And if she did say that, I truly can't understand why she would say that. As I mentioned to you before, the best my doctor would say to me, despite excellent prognostics was that he hoped I would do well. I most respectfully disagree with SpecialK when she says to believe you are cancer free is naive. Instead, I believe you are brave to believe you are cancer free. I wish I could be that brave so I could avoid the treatment that I have accepted because I'm afraid of the other possibilities....

melly1462

I met with the MO today and the first thing I noticed on my chart is I'm now Stage IIa instead of Stage I.  When questioned I was told because my tumor was 2.1 cm after surgery rather than the 1.8 cm at diagnosis.  Because of my HER2+ status I don't think my treatment plan would be any different had I remained Stage I.

As to the other, I believe I'm "cancer free", the cancerous tumor is gone.  But....I don't believe I'm "cured".   For me there's a difference.  I'm learning cancer is all about statistics and recurrence rates.  I have an 81% chance of making it to the 5 year mark.  I will do what I can to be a part of that 81% and try not to worry too much about that other 19%.

Hindsfeet

VR...I've been told at least 3 times (2 lumpectomies, and 1 mx) that they got wide margins and I'm cancer free. Sorry, but that is what I was told. It just got me this last time being told that with the but...just in case...let's do radical treatment.

The senior members of bco seem wearied with my questioning staging and all. However, just because some of you brilliant ladies have a better grip on all this doesn't mean newbies coming here dx with early stage bc  understand perhaps the seriousness of early staging or all the variables involved in staging/treatment options. It's a lot more complex then presented at ones 5 minute post op appointments. Oncologist don't always answer your questions...they just say, do this because it's "standard" treatment. Sorry, but I want individual treatment plan with all my health concerns taken into consideration.

I'm about done being here. I'm feeling really tried right now by those of you who don't understand why I struggle with early staging ... PERIOD!  Hope ladies coming along on this thread, who are early stage understand how it all works. That's the only reason for posting the question in the first place. Good bye.

melly1462

@eve: I'm new to the "cancer industry", and yes I'm discovering it's an industry.  I understand your weariness but so long as you're breathing NEVER stop questioning.  Not everyone will agree with you and that's okay.  I have learned the most from you ladies who engage in good, healthy debate.  

There is no "one-size-fits-all" with treatments.  No matter the stage.  Doctors are only as good as the latest research or clinical trial.  And personal preference plays a role in what treatment they recommend.  I. Me. Will choose what treatment I feel is best for me.  

And now I'm off to have the SAVI device implanted for radiation.  Not everyone agrees with this choice I've made.  And that's okay.  

Healthy vibes sent to you all.

thenewme

As Beesie so eloquently said on another thread, "We have enough to debate about here on the stuff where there are no clear answers - and there is a lot of that - that I find it particularly frustrating when there is so much debate and so much misinformation about the stuff that should be pretty clear. "

In this case, early staging (or any other staging) guidelines are really pretty well defined in the NCCN guidelines. Treatment guidelines are pretty clearly defined too, at least as far as current research allows.  The NCCN guidelines also "allow" and even *encourage* variation from the standard guidelines to accommodate individual circumstances, disease characteristics, comorbidities, and personal preferences.  Nobody is "forced" to do any treatment, and there's no such thing as a "one-size-fits-all" cancer treatment.  

I personally enjoy researching and learning details, but at the end of the day, I trust my medical doctor to understand and interpret the scientific medical literature and make recommendations about my treatment. I ask questions and discuss the options with my doctors, but really it's not all that critical to my treatment whether I personally understand every single detail about the hows and whys and wherefores of every aspect of my disease and treatment. 

Our hopes, fears, understanding, and assumptions about breast cancer are sometimes rational and sometimes not.  That's where trained medical professionals come in.  

Hindsfeet

http://www.cancerworld.org/pdf/2794_32_37_cw13_Forum dx..pdf
 "The leaders of the AJCC and UICC,
in response to my editorial, wrote that it was all right to have outcome
cross-over in the staging system, because it's not a prognostic system,

"Let's base prognosis on the biology of the disease, not on how big it is when it is discovered"

Clinicians are totally shocked when I tell them that the staging system
is nothing to do with prognosis now." He said most clinicians did not
know of the disconnection between stage and outcome and continue
using TNM. Yet this approach, using the stages to determine therapy,
could mean that some patients were being denied an effective therapy
they needed, while others were beingtreated unnecessarily.
Burke says that this is impossible because you
would end up with hundreds, if not thousands, of different categories
that cross over each other, thus defeating the main purpose of TNM
- that it is a simple, easy to understand and use, outcome system.
However, Burke feels that the real issue with the use of TNM is what he
calls "biological determinism". "The essential question is: are we going to
continue to treat our patients based on an anatomic extent-of-disease
approach, or are we going to use what we have learned about the biology of
the cancer to defeat the tumour that is growing in the patient?"
Seconding Burke at the EBCC
Jean Perrin, Clermont-Ferrand,
France. She highlighted the irrelevance of TNM in breast cancer compared
with the far more relevant information that is now known about
the role of oestrogen and progesterone positive and negative markers
(ER and PR), and HER2 status.
"We need prognostic and predictive intrinsic tumour parameters of
response to treatment that can be obtained by understanding the
tumour biology. These are not in theTNM!" she said.

Opponents argue that information on molecular biology, such as HER2 status
as revealed by the FISH test (right),
should be at the heart of any modern staging system...

Racy

Good post, thenewme!

Megadotz

Eve,  sounds like you had a very different explanation of your diagnosis than many of the rest of us.

My MO is always saying that there are "no guarantees" and that "everyone is different".  At our first appointment she explained that some people diagnosed with early stages  die and some diagnosed with late stages survive a long time.  Around the same time I heard  from another source that you can be cured, but you can never be sure.

I've never the term "cancer free" from any of my providers.  I think it may have come about a softer term than remission.  I think NED (no evidence of disease) is a more accurate description.

There is new research that is coming out all the time, and within a six month period knowledge about a particular  configuration of tumor attributes may change and the treatment options change with it.

Staging is just one part of determining treatment plan, not the whole deal.  My medical team was very clear that there are many factors.  I'm sorry that you didn't have the same experience.

 

Mallory107

Nobody that I have come across in my journey has ever volunteered a 'stage' to me.  Finding out my stage has always been something that I have had to ask for and even then it was given in a kind of 'hmm, well if you really want to know here it is' tone.  It was evident that my whole team was already beyond the use of stage to develop treatment.   

Hindsfeet

The only reason, I posted on this subject again is because I found this article interesting in regard to staging in that I'm not the only one out there questioning it. I wouldn't be surprised in a few years down the line the whole staging is replaced or refigured.

 From what I've read the aggressiveness of the cancer depends more on the biology of the tumor than often the size or even nodes. Those who are stage 2, and have grade 1 in the nodes without the her2+++ factor prognosis is often more favorable than someone who is stage 1a who has the her2 positive and grade 3. The stage 1a with poor biology grade 3, with the her2+ might not be found in the node taken but I'm told that micromets are possible by blood or nodes not taken, which can show up a year later as mets. (this is why I had a mx and I'm doing herceptin).

  I tell people I'm stage 1a, early cancer, and they say, it's a good cancer. Yet, I'm told to do the same treatment as if I was a more advance stage and that every unusal pain I notice will need to be scanned and etc...as said by my oncologist. Staging separates us into different catergories, (higher the stage or letter the worse the cancer) and in some cases, perhaps, and in some cases not necessarly, but as far as I'm concerned, simply, we're all staged cancer...doesn't matter what kind of cancer either. 

 I am most symphetic for those who are stage 0, because so many don't believe them to suffer as those who are stage 1 & up. The stage 0 lose their breast, lumpectomies, go through rads and are reminded every day when they take their tamoxifen for 5 years that they are fighting cancer...and it can come back. I hate it when people say even here, you are just early stage or stage 0. These women are going through so much for stage 0?  They are said to have the good cancer or in some cases they told that they only have pre-cancer. Sorry, I never liked the stage 0 ... Zero to me means nothing is going on. And this is what people think when they hear stage 0. To be stage 0 said to me, I really don't have real cancer, but for preventive, let's take off your breast, rads or tamoxifen for 5 years.

I've had several doctors and all of them protocol to treatment had to do with staging...ALL OF THEM. Sounds as if this was not the case for some of you.

Hopefully this is my last vent on staging. I do not mean to step on anyone toes...if so, my apologies. I was happy to find the article that somewhat supported my observations in regard to staging....only reason to bring this up again. I've always hated boxes and I suppose staging is doing just that and maybe this is another reason why I am reacting to the idea of fitting into a catergory or box And...to add, I don't need anyone to explain to me the staging differences...I' know what the different stages are for some time. That wasn't my problem.

I wasn't going to post for a long time except on one her2+++ thread...but couldn't stop myself from getting this off my chest

Hopefully this is end of my need to say more and leave the rest to you to drop it or continue the discussion.

Thanks for letting me vent...the end

edwards750

evebarry - I can understand your confusion about staging but at least for me when I was dx I wanted to hold onto anything that gave me some semblance of optimism about my particular cancer. We are all pretty much in fear of being staged as III or IV because our options/treatments become more limited. It certainly does not mean BC in those stages are not treatable because of course they are. There are a number of testimonials from women who are still alive and kicking who were dx in one of those stages. I have Stage 2, Grade l bc. I have had a lumpectomy and 33 rads treatments. While I am encouraged that my first mammogram since the dx is fine the fact is none of us will ever be in a place that we wont be looking over our shoulders because we have the C word plain and simple. BTW some drs dont even do staging. You are right that most drs are more interested in the aggressiveness of the cancer. I had the oncotype test done at the request of my oncologist. She was ambivalent about my treatment plan because I had a micromet in the SN. My score came back low; the size of the tumor was not as large but the most important thing I took from the report was my particular tumor/cancer was determined to be non-aggressive. Frankly we are all inundated with information and it is next to impossible to process all of it. I was told I have a wimpy cancer by my BS only to find out he tells them to anyone who has Stage 1 or 2. Maybe drs are unaware, but should be, that we hang on their every word waiting for some word of encouragement or it will be okay. They can say the first but of course cant guarantee the second. BC is not curable but it is treatable and that's all we have for now. For the record I still feel somewhat optimistic because my cancer was caught early and so far has not ventured anywhere else. No one has all the answers. Right now we are all basically statistics. We cant hold the researchers to those stats because actually based on the criteria used for women most likely to get breast cancer - I dont fit and yet I have it. Enough said.

lago

My BS syas I'm NED (No evidence of disease). I think this is the best language to use.

As far as HER2+ I know my much older post menopausal neighbor (stage III) got the exact same treatment as I did. She too was HER2+. Staging is a guide to treatment but there are other factors like your age, HER2 & hormonal status, menopausal status that play a big part in your treatment. HER2+, triple negative, family history, BRCA+ and younger agealmost always will be treated more agressively than those that are not.

Hindsfeet

edwards...I had to respond to this comment...not to argue, but it sparked a strong emotion in me   Right now we are all basically statistics.

I' see it differently in that we are not statistics. I don't consider myself a statistic. It is my opinion that we are all different...even our cancers. I see our cancer as different as our fingerprint. Cancers are different...one tumor can be mixed bag of tricks constantly changing...And, like largo said, it depends on a lot of factors other than the stage we are given at dx. To add to what she said, take in our over all general health,  and or do we have other health concerns such as diabetitis;  weight, do we smoke and or life style habits (such as inactivity)...The doctor needs to consider all these into our over all treatment rather than staging (and I'm sure most do) ... but what I hear...this is standard treatment for your stage. It is my opinion that statistics for a lot of cancers are based on stage rather than "individualize" treatment".  At least this is what I've read or saw on a graph dealing with risks/staging. I think it would be better to have "individualize" dx taking in all the factors we mentioned. With that said, yes, there is a place for statistics...as Beesie is so good at pointing out generally overall statistics...but, it may not define our particuliar cancer or treatment. My favorite illustration, my previous dx stage 1a was idc mucinious cancer grade 1. Standard treatment surgery, tamoxifin & rads. My recent dx, stage 1a idc, grade 3, triple positive, larger tumor, and her2+++. Treatment, chemo, mx, tx, and herceptin. So stage 1a means nothing to me. If it had to do with defining my cancer by staging, I should not feel my recent cancer is that serious because after all the mucinious cancer I had rarely if ever mets... is the same stage as my now supposely aggressive stage 1a dx. Put my two idc cancers next to one another on a graph and see if the risk factors are the same. Case in point. Ok...now hopefully I'm done with my venting...guess you can tell this whole staging thing gets to me. (my venting goes toward early staging only).

Largo...to comment...I'm in my mid 60's and my treatment protocol is the same as those who are 40's at least for my stage 1a. I know of an older bc women than I, who went through one chemo treatment after another....in her 70's, who has a very aggressive cancer. I read that older women don't have aggressive tumors... Most women are dx with bc in their 50's and up. It seems by these boards a lot of women are dx with aggressive cancers. I was said to have an aggressive tumor...a lot of recurrences in just a few years. This is why I don't like boxes

lago

Typcally older women have slower growing hormone positive tumors but not always. My neighbor in her late 60's is triple positive like me. I was surprised she was HER2+. I was 49 at diagnosis and when I did chemo, bmx.

edwards750

evebarry...dont think you are arguing but we can just agree to disagree.

puce

I was told at my first appointment when I asked for my staging that I had an aggressive tumor and that they don't mess around with stage 1 anymore, that it often comes back.

I got an aggressive treatment.  Better safe than sorry in my opinion.

undercoverebel

As an early stager I feel lucky and unlucky. I know i'm in a better situation than more advanced girls but there's not as much comfort in that as one might think. My doctors have flat out told me i'm looking for answers where there aren't any in regard to stage 0 BC. It's thought of as pre-cancer or lucky cancer and as such no one cares about it. I was told by my RO that no one is interested in studying it because it's not life threatening. They don't think I need Tamox,would do little to help,same w/rads. But it could,they can't be 100%. This is the assurance I get after years of research and loads of money spent. It just wan't on stage 0 BC,so lucky me??? I hope to be here in 5 or 10 yrs to answer "yes" and so do the doctors. At this point hope is all they have,not concrete evidence. I don't know what it's going to take to learn more about BC and treat it well enough the first time on the more advanced cases either. Sadly I don't think the doctors have a handle on this as much as people think they do.