A cancer's stage does not change

Those who are stage IV out of the gate frequently have a different, and less agressive up front treatment.  It would be interesting to see if those who are diagnosed at stage II, who progress, have a longer or shorter survival time post progression than people who are diagnosed at stage IV.  The fact that the medical community keeps those stages separate, but doesn't separate them when talking about survival statistics makes one wonder.

Let's face facts, cancer doesn't start as stage IV, it always starts small and progresses.  Those who are diagnosed at stage IV were stage II at some point, they just weren't identified as cancer patients then.  That means we don't know how many years they had with no symptoms before they started treatment, so they may have actually had more time between being stage II and stage IV than those diagnosed at stage II and treated agressively.  The only timeframe we can compare with any accuracy is the survival time from the point of stage IV diagnosis.  Why don't we?

This is weird definition that probably only applies to some specific statistics (such as breast cancer mortality rate for different stages).   In most papers on metastatic breast cancer(stage IV) includes both people dxed stage IV (call them IVi for initial) and people who progressed from I/II/III stage(call them IVr for recurrent).    

It's also widely suspected with good reason, IVi patients often have better chance than IVr, especially IVr patients who progressed on earlier treatments, the sooner recurrence the worse.   Once a patient is metastatic, no matter the prelude to metastatic diagnosis, her survival probability is a function of (tumor grade, ER/PR positivity, HER positivity, sites of metastasis, response to chemos, other factors)

Offshot is: Metastatic breast cancer currently has no cure(even with the latest advances 1/2 die in 5 years, everyone flip a coin, with a little more or less weight).   All the things that are done for stage I,II patients, surgery, radiation, chemos, hormonals, biologicals are in hope of preventing MBC.  

The cure for MBC is the only thing that could save an early stager definitely from that coin flip.  so invest in the cure for self-interest.

These kinds of discussions interest me.  I still can't quite wrap my head around the fact that it appears that metastatic is only diagnosed if it's tested for.  If you're early stage..they don't scan you.  You could have a met somewhere and technically be stage IV, but because you didn't get a scan, you aren't stage IV. 

I've read of women on here that find out they are metastatic on accident because of a scan for a totally unrelated condition. So where do they fit in?

Good point exbrnxgrl.  And you were only Grade 1.  It's such a crap shoot.

From a statistical and reportintg standpoint, I get it.  Survival stats are provided by stage but the simple fact is that nobody who is Stage I (or Stage II or Stage III) is going to die of breast cancer unless they progress to mets. So if the survival rate for Stage I is stated to be 90%, this means that 10% of women who were initially diagnosed as Stage I eventually developed mets.   If every woman who developed mets was 'officially' reclassified as being Stage IV, then the survival rates of all stages except Stage IV would be 100%.  And that wouldn't tell us anything about prognosis or about whether or not changes in treatments are effective and improving survival. 

On the other hand, from a practical standpoint I understand completely why any woman who develops mets would considered herself to be Stage IV.  How difficult would it be to explain one's situation to others if someone with mets stated their stage to be Stage I?  When women of any stage (based on initial diagnosis) say that they are Stage IV, it puts them into an exclusive group that understands each other and that is dealing with issues that no other breast cancer patients have to deal with.  So it just makes sense for anyone with mets to say that she is Stage IV. 

The 'official' and the 'practical' don't have to be the same. 

As for the fact that scans aren't regularly done on women who appear to be early stage, this too makes sense to me.  Someone who is early stage might in fact already have some cancer cells that have moved into the body, that's true.  But with no symptoms and no indications that there might be mets (i.e. lymph node invasion or vascular invasion), the odds are high that the amount of cancer is too small to be seen or found by a scan. The likelihood of finding something else - something benign that causes panic and unnecessary biopsies and confusion about one's diagnosis and stage - is probably many times higher than the likelihood of finding a tiny area of mets.  And if in fact there is just a tiny area of mets, it might be tiny enough that treatment - chemo or hormone therapy - is able to wipe it out.  This is after all why chemo, in particular, is given even to node negative women.  It's because ~20% - 30% of women with no signs of mets do in fact have some rogue cancer cells that have escaped into their body.  Chemo can be effective at killing off those rogue cells, thereby averting the development of mets.  So the way I see it, by regularly scanning all early stagers, you might end up with some premature diagnoses of mets.

I do understand that by not screening early stagers, it means that some legitimate cases of mets might not be found until some time later, but I suspect the numbers are probably quite low (in terms of mets that are large enough to actually be found).  I suspect too that the timing of finding and diagnosing mets likely doesn't have any impact on survival.

Beesie - 

I understand your point but have to politely disagree regarding the not scanning people.  I strongly believe every breast cancer patient should have a petscan to see what is going on.   My oncologist, thankfully, routinely does a petscan before chemo to make sure of what is going on.  I was going to be having chemo because of my mammoprint score and age.  I was stage I in the breast, and the petscan showed 7-10 lesions in the liver with one being 5.6 cm. That one tumor was 3 times the size of the one in my breast.   My liver function tests were not elevated at all, completely normal.  Tumor Markers were not run until after the petscan showed something, and while they've been reliable, they were not extremely elevated.    Thank goodness my MO still agreed to pursue agressive treatment with chemo which has  decreased it significantly (I'll find out more at my petscan in 2 weeks) followed by hysterectomy and AI's, etc.    The good thing is that I will be followed regularly for any fluctuations.  I've read several studies that say those who are found as stage IV at the beginning have a better outlook because they still have everything in the arsenal to use and can be followed very closely all along.    

The scary thing to me is that with that much cancer my liver function tests were all good.  I have been told in no uncertain terms that if it hadn't been found now, by the time the liver function tests were bad enough to be a concern, it would have been too late.  I know that several of the nurses at my mo's office have stated that they believe many recurrences could be missed mets from the beginning that never went completely away but were repressed by inital chemos and slowly begin to grow again. I know that that is a situation for a friend of mine with bone mets that were incorrectly labeled on her initial petscan as arthritis. At the 3 year point, they flared back up, but unfortunately she doesn't have as many options now.   

As much as it stinks to be labeled stage 4 from pretty early on (and yes, my MO says I am stage 4), I'm thankful that we won't quit trying until we get the very last cell and get those markers in the normal rage.   I was on a thread for surgery the same month as mine, and I was shocked that less than 10% of them were scanned.  Of course, once I posted my bad news, I think several asked more about it.  I know a scan might not pick up every cancer that is in its earlier stages, but I think that it is a huge disservice to the patient to not have a full picture of what is going on from the start.

JoanQuilts -- I had absolutely no symptoms of the cancer in my liver from pain or any bloodwork.  I have been repeatedly told that if it wsn't found until symptoms, I would have been in the "months left" category.  Plus one of the original chemo drugs that I was going to be given is counterindicated for people with liver disease so it would have made my liver even worse.  

Maybe its just me, but I'd rather have the full ability to fight and possibly become NED and have years as are expected while being thankful for each day rather than have it falsely be called a recurrence and have months to get things together suddenly.  I have a friend in the 2nd situation, and she is very upset that her cancer was wrongly identified as arthritis.  If it had been identified at that time, there would have been other meds that they could have done & kept her on so that she might not be at the place that she is today.   My opinions come from watching her situation and mine so I understand that  others might feel very differently.  Obviously because of my situation I am a STRONG advocate for the PETscan and people being screened early if they want to be.  

It's all about statistics and the money.  They know that there is a small percentage of early stage women that will have mets discovered if they are scanned.  But there will also be a large percentage of women that will have false positives, or find nothing at all.  So the potential gain of helping a handful of women isnt' worth the cost of testing everyone.

I know they say that finding metastatis before symptoms arise doesn't matter... but I've read many stories on here that convinicingly tell a different story.  

nbnotes ~ I'm glad your MO found it early for you! It is humbling to think that a small tumor, no node involvement, no indications in bloodwork...and it had already metastatized.  There is just so much we don't know about how each person's individual cancer works.  You say you had a mammoprint? Did you have an oncotype test too?  

Jenrio, I wasn't very clear, sorry.  My statement "So if the survival rate for Stage I is stated to be 90%, this means that 10% of women who were initially diagnosed as Stage I eventually developed mets." was just an example - I should have been clearer in saying that.  I wasn't suggesting that 90% is the 5 year, or long term, survival rate for Stage I.  I don't actually know what the long term survival rate is. I was just trying to make the point that from the standpoint of quoting survival rates - overall, long term survival rates - it makes sense to not change the stage from whatever it was at the time of the initial diagnosis.  I was trying to figure out how to write that clearly and I guess I didn't quite succeed.  ;-)

nbnotes, I completely understand why you don't agree that scans shouldn't be done on early stagers.  In your shoes, I suspect I'd feel the same way.  But having seen so many women being scared beyond belief because of something that showed up on a scan - something that turned out to be benign - and knowing that most early stagers don't end up developing mets, I still think it's better to not scan earlier stagers.  The other key factor for me is what Joan said, which is that my understanding is that finding mets earlier through a scan or finding it later through symptoms does not make a difference in survival. If it did, then I'd be in favor of scans for all early stagers - some panic because of a benign lesion that shows up is well worth it if earlier scans are able to save or extend lives.  But with no proof (that I'm aware of) that the scans make any difference, I'll opt out of scans.

The other thing that concerns me about scans on early stagers is that they may provide a false sense of security.  This is something I've unfortunately seen a few too many times, both on this board and with people I know personally. Someone has a clear scan and as a result, they become relaxed and less diligent.  This leads them to ignore physical symptoms, and possibly miss or delay the next scans. But eventually it's found that the scan simply didn't catch the progression of the cancer - it was there all along - and they are diagnosed later than they might have been.

So we can agree to disagree.  I simply offered up my personal opinion. I certainly understand why you don't share it. 

Susansgarden:

I was stage I no nodes 4 years ago - triple negative.  My onc insisted on scans - Had breast MRI done at breast surgeon's insistance after mammo and US and biopsy and prior to lumpectomy.  Onc insisted on and ordered full body CT with contrast - (wanted PET but insurance wouldn't approve it), had bone scan and had echo cardiogram prior to my ACT.  My onc felt, especially with triple neg, that she wanted to make sure nothing was lurking and hiding somewhere, and for her attitude, I am most thankful.

After my mammo and ultrasound, an appointment was made with the surgeon for the medical facility.  No scans were scheduled, etc.  Being in Texas I immediately thought of MD Anderson and self referred.  My mother always had a thing about accessing the best facility you could.

I kept the appt. with the surgeon and again there was no talk of staging or additional scanning, just what kind of surgery did I want.  Of course that is his business.

MD Anderson discovered a tiny met on my scapula.  Even they didn't think it was a met but did a biopsy to be sure.  Unfortunately it was a met.  Surgery became the least of my concerns and I'm grateful for that.

There should be a standard of care for thorough testing, not just at major cancer centers like MDA. 

Honestly I don't know what the outcome would have been had I not gone.  Maybe I would have been Stage 1 or 2 to the statisticians.  Eventually they could have added "with met".  My treatment would have initially been harsh, instead I went straight to hormonals.  I'm 3 1/2 years out and hopeful for more years.......have stabilized this year.

I agree with another comment above, Social Security would be denying the compassionate allowance review to a lot more women if they aren't identified as Stage IV, and that would be a sad outcome of semantics.

This is just unacceptable. I went to the University of Kansas, NCI, hospital and I had a bone and CT after surgery. Due to various anomalies, I had anotheer CT three months later (all benign). I have my yearly bone and CT coming up in March. I am so happy for the oversight. Everybody, imho, should have at least one CT and bone scan after surgery. More scans would be dependent on one's pathology.

At the first appointment with my breast surgeon (who happens to be chairman of the NSABP) he ordered MRI and PET/CT.  But I don't think he orders them for every patient.   I think because of my age, my multi-focal disease and the size,  with a palpable node in the axilla,  he was concerned.  I know for my neighbor, who is 20 years older than me with a smaller lump,  he did not order additional scans.  I remember how frightened I was waiting for those results.  Fortunately, nothing was seen anywhere else in my body at that time.  It is very possible that doctors make decisions on imaging on a case by case basis, which is the right thing to do, IMO.   

Interesting thread.  I was dx as stage 1 and my MO's would not do any scans.  I found that very frustrating because I had LVI present in the pathology and had clear nodes.  I ended up having a bone scan for some pain and that revealed nothing.  I am over 2 years out and have never had a PET scan at all.  My original MO did not believe in doing tumor markers on me either.  I have since moved and had to find a new MO.  I went to an NCI and they did nothing on me...not even blood work.  I switched MOs to a non NCI closer to my home and my new doc does blood work every 4 months on me.   I am happier with this.  I may have been stage 1 but with LVI present there was an established pathway that cancer cells could have spread and no one would check to see if it happened.  That was hard for me to accept especially since I was first seen at an NCI when I found my lump (a few months after a clear mammogram) and they told me it looked like a fibroadenoma and to come back in 6 months.  They did not really push me for biopsy...they didn't really even recommend it.  I went back in 6 mo's and was told I needed a biopsy immediately and it was positive for IDC.  After all of that it is hard to trust the doc's.  I still feel I should have been scanned since there was LVI.  Thoughts?