I've had DCIS for 17 years

For those reconsidering or wondering if they over-reacted: my mother was diagnosed with grade 3 comedonecrosis DCIS in 1991.  She had a unilateral MX - no spread to nodes, nothing elsewhere.  She had follow-up mammos and exams every 3 months, then 6 and they never found anything.  4 years later she was DX with bone mets, then brain lining and brain mets and died in 1997.  EACH PERSON AND EACH DX IS DIFFERENT AND NEEDS TO BE TREATED INDIVIDUALLY.  It's great to get feedback, and to research everything, but in the end, everyone has to make the decision as to what they are comfortable with.  Yes, DCIS can lie "dormant" for a long time, or it can turn invasive (who knows what the "key" is that turns it?) in a relatively short time. 

Rianne, people do alternative treatment all the time - somewhere there is a "natural girls" thread, for instance.  As to having nothing to feed a cancer - ever eat bread or milk or candy or any sweets?  Some research shows that sugars can feed cancer.  You will need to see what your actual diagnosis is to make your final decision.  Sometimes the doctors are making educated guesses, and sometimes they really do know the prognosis and the best treatment. 

Thanks, Beesie, for your great research.

my surgeon told me when I was first diagnosed with DCIS, that it had probably been growing at least 4-5 years.  Its very slow growing.  However, this episode I had 1 year later in the Rt breast was different, it was High Grade and no hormones feeding it.  That really scared me, since the first case was positive for ER/PR.  So that means that they don't know and yes it could be genetic.  I was taking all kinds of supplements for the last year since I found out and it still did not make a difference.  Would I just let DCIS go?  No way... you don't ever know what its plans are.  Each case is different as each woman is.  Just my 2 Cents worth.

Rianne,  there are so many things to consider.  I am glad you have found this site to help get through the zillion questions we have in the process.

rianne, 

To my understanding, DCIS cells are cancer cells. They have 90%+ of the characteristics of invasive cancer cells. There is however one final biological change that must take place within the cell to enable the cell to break through the milk duct and/or survive outside the milk duct.  This is why a biopsy - which could release some DCIS cancer cells into the open breast tissue - doesn't result in the development of invasive cancer.  If the DCIS cell that is moved into the open breast tissue has not undergone this final change, it won't survive and thrive. So it's a mutation of the cell, not an injury to the cell, that leads to the evolution of cell from being a DCIS cancer cell to being an invasive cancer cell.

Is the absolute only way to tell if you have cancer is to remove the tissue?  Unfortunately, yes. 

This drawing from this website might help explain the progression of the cell changes as a cell goes from being normal through to becoming invasive cancer:

http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp

Lastly, I just posted something in dmho's thread that might be helpful to you as you struggle with this decision.  It's a list of questions to ask yourself, to figure out whether you can live more comfortably with a lumpectomy or with a mastectomy or with a bilateral. The questions won't make the decision for you but it will get you thinking about the implications of each of the options and figuring out which implications are better for you / easier for you to deal with.

Hope that helps!

Rianne, I'm sorry that you've been found to have the 4mm of IDC.  Hopefully your MX and SNB show nothing more and this is your final diagnosis.

In my case, I had only 1mm of IDC, which is a true microinvasion.  A T1mi tumor is an invasive cancer that is 1mm in size or smaller.  The next classification is a T1a tumor, which is greater in size that 1mm but no larger than 5mm.  So your tumor is a T1a.

I did not have chemo or rads.  The 'line in the sand' for chemo is a tumor that's 5mm in size or greater, if the tumor characteristics are negative (i.e. if it's an aggressive tumor). Some doctors will err conservatively and recommend chemo to women with aggressive tumors that are as small as 3mm in size. For women who have more favorable pathologies, sometimes chemo isn't given even for invasive tumors that are as large as 2cm and or possibly larger, now that Oncotype testing is available. With my tumor being only 1mm, I fell well below the line in the sand even for the most conservative doctors so chemo was never considered.

As for rads, when I was diagnosed 5+ years ago, rads were rarely given to women who had mastectomies for DCIS. Since then, a study came out that showed that women who have close margins after a mastectomy for DCIS face a significantly higher recurrence risk (16%) vs. those who have good margins.  So more and more doctors are now recommending rads to women who have close margins after a mastectomy for DCIS.  Even the NCCN Treatment Guidelines have been changed just this year to say that rads might be necessary after a mastectomy for DCIS, if the margins are close.  For those who have DCIS and a small invasive component, if it's the IDC that is closest to the margins, then that's another reason to recommend rads.

Rianne, with a 4mm tumor, you are at right at the edge of the 'possibly consider chemo' line.  So it's the pathology of your tumor that's most critical now.  If your tumor is triple negative or if it's HER2+, then chemo might very well be recommended (and Herceptin too if you are HER2+).  But if your tumor is ER/PR positive, then the only additional treatment recommendation after your MX might be Tamoxifen.  If you are ER+ and are found to have negative nodes, having the Oncotype test will help you and your doctors with the chemo decision.  I haven't had a chance to look back at your older posts; do you have the hormone status information yet? 

Rianne - Like you, I, too had a small amount of IDC. Mine wasn't detected on the stereo. biopsy, mammos, or the MRI my surgeon scheduled for me to help make the decision (lumpectomy or mastectomy), so I went forward with a lumpectomy and only when the lump. pathology was done did 1.75 mm of grade 2 IDC show up. So it really is true that you never really know until things are removed and studied.

With 4 mm of IDC, you aren't borderline according to my oncologist. Although every person is a unique case, she told me that she prescribes chemo when there's 1 cm or more (so more than double what you have). She's a prominent onc., so I tend to think she knows her stuff, but there's also a human interpretative component to these things; your onc. may have a different criteria, but did want to give you comfort that likely you won't do chemo unless you really want to.

Rianne - As we've all learned, a bc diagnosis, regardless of the stage, is a kick in the pants to our confidence that it's all taken care of and won't ever rear its ugly head again. Recently someone told me "Don't go looking for trouble" and so when I find my finger wandering over to a post about stage IV starting as a dcis diagnosis, I choose to not read it. I mean no disrespect, but we really don't know the medical details behind people and posts like those, so I choose to look at my situation as the glass half full -- thankful that mine was caught early and making the best decisions for myself given the medical information available. No regrets,no Monday morning quarterbacking, that's the best we can do to maintain our quality of life, and don't go looking for trouble