The one that got away?

Bettylovestrees,

I'm so sorry you are in a dark place.  You aren't alone with the ups and downs following diagnosis/surgery.  By protecting themselves, the doctors' have created extra anxiety that you don't need.  My advice, first and foremost is, if you need to research-do it here.  Don't trust Dr. Google.  These forums are the best place to come for comfort and reassurance.  You may want to consider therapy, if your obsession is affecting your quality of life.  

You are so right that it takes awhile to sort everything out.  I'm still working on it, I'm only a year out.

I know there will be others respond to you soon.  Please take care.

Betty, with breast cancer, there is nothing that is 100% certain.  And I'm guessing that is why your doctor said that you were 98% cured, not 100% cured.  Compared to all breast cancer patients he sees, you have the lowest possible risk, so he probably thought that he was reassuring you when he said "98%".  What he should have said is that "your chance of being cured now is as close to 100% as it can possibly be".

So here is what's most important to know about DCIS:  Pure DCIS can not metastasize.  So to say that "a cell may have got away and travelled via (the) bloodstream to lodge to some other site where it could possibly develop into mets" is simply not a possibility with pure DCIS. 

What this means is that if your diagnosis was truly pure DCIS, and if your surgery successfully removed all of the DCIS cells in your breast, then you are in fact 100% cured.  DCIS is the only type of breast cancer for which this can be said. 

Now, about those "ifs". It's the "ifs" that drop the 100% cure rate down a bit.

First "if": "if your diagnosis was truly pure DCIS"  It's possible, when the breast tissue is being examined under the microscope, that a very tiny microinvasion of IDC could be missed. Consider however that microinvasions that are only 1mm in size - and many even smaller - are routinely found.  So if something is missed, it's likely to be very very small.  And what are the chances that this happened? Betty, I don't know how large your area of DCIS was, or what the grade was, but you do say that your DCIS was very slow growing.  It's rare that a slow growing DCIS would include a microinvasion.  So the odds of this are small. 

And if did happen, if there was a tiny area of invasion that wasn't found when your pathology was done, what does that mean?  In most cases, it means nothing.  It was a small area of invasion, and it was removed along with all the DCIS, and once it's gone, it can't hurt you.  The only risk from this sort of an occult invasion is if, prior to your surgery, one or a few of the cells broke off and moved into the nodes or the bloodstream and from there, into the body.  And those few rogue cells would have to survive this process and take hold and thrive. With a very tiny amount of invasion, and so few cancer cells, the odds of this happening is very very low.  

So let me throw out some numbers.  Maybe there was a risk of 10% that a small area of invasive cancer was hidden in the middle of your DCIS and missed by the pathologist. Maybe there was a 10% risk that one or a few of those invasive cells moved into the nodes or the bloodstream (this is supported by research; there is a 10% risk of nodal involvement from a microinvasion).  And maybe there was a 30% risk that those rogue invasive cells actually survived and moved into the body and eventually took hold somewhere, developing into mets (I doubt the risk is that high).  That all works out to a 0.3% risk.  Less than 1/3 a percent.

Second "if": "if your surgery successfully removed all of the DCIS cells in your breast" The biggest risk from a diagnosis of DCIS is that all the DCIS is not surgically removed and/or killed off, and some of the remaining cells continue to develop and eventually become invasive. This leads to a local recurrence which is invasive cancer rather than DCIS (approx. 50% of DCIS recurrences are not found until they are invasive).  Once someone has invasive cancer, there is the possiblity of mets.  So what are the odds of this happening?  Many studies have confirmed that after a MX for DCIS, if the margins are adequate, the recurrence rate is in the range of 1% to 2%.  So let's say it's 2% (although with a slow growing DCIS, your risk is probably closer to the 1% rather than the 2%).  Approx. 1/2 of all recurrence are invasive.  So this means that your risk of developing an invasive recurrence is at most 1%. Most invasive cancers are early stage and never develop into mets. I believe that the overall risk of mets from invasive cancer is about 30%. So this means that the risk of developing mets as a result of an invasive recurrence after a MX is about 0.3%, or less than 1/3 of a percent.

So your doctor is right that he can't say that you are 100% cured.  But the risks you face are very very small - and not something that you should live your life worrying about.  Remember that before you were diagnosed, you faced approx. a 12% risk to develop breast cancer at some point during your life (assuming you were average risk).  Did you think about this every day?  Or did you go on with your life and never think about it, except for those days when you were having your annual mammos?  The risk you face now from this diagnosis of DCIS is just a fraction of that risk, and it's probably smaller than other health risks that you face that you never even think about.  So don't obsess about it.  Try to not even think about it.  At first that is hard; I know that. I remember having those same fears (and I had a known microinvasion, so my risk is a bit higher).  But in time you'll find that the fear will fade. 

Edited to add:  Betty, I've also responded to the other thread that I think may have been fueling some of your concerns.  http://community.breastcancer.org/forum/16/topic/801702?page=1#idx_11   I hope that helps clarify a few things.