anyoneTN with DCIS and microinvasion with no chemo

A microinvasion is a Tmic tumor, which is 1mm or less in size.  Eileen and Ellie, I notice that you both have T1a tumors.  A T1a tumor is a bit larger than a microinvasion - it's greater than 1mm in size, but not larger than 5mm.  According to the NCCN treatment guidelines, chemo should be considered for those who have Stage I triple negative tumors if the tumor is 6mm or greater in size (i.e. T1b and T1c size tumors).  I know that doctors who are conservative tend to lower the bar a bit from the NCCN guidelines, so I could see someone with a 4mm or 5mm triple negative tumor getting chemo however I would be very surprised to see many doctors recommend chemo for a true microinvasion, i.e. a 1mm invasive tumor.  In my 4+ years on this board, I don't think I've ever seen it.

Here are the guidelines:  http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf  These are the treatment standards used by most doctors in the U.S.. You may have to register to be able to access the file.  Staging and tumor size is explained on page 57 and you can follow the decision tree of treatment options for Stage I T1a ER-/PR-/HER2- on pages 10/11, 12 and 16.

Ellie:

I don't mean to scare you, but I advise you to read the Just diagnosed with recurrence thread on this forum and you will see that there are two or three gals that had DCIS (one I believe had IDC microinvasion) that did progress on to bone mets, one 10 yrs. later.  I say this only so that you may totally educate yourself totally.  With triple negative, we only have chemo as an option to (hopefully) eradicate this beast.  This would be your only shot at really attempting to stop it in its track. 

I know there are no guarantees for any of us, no matter what we do, but I know for myself, as much as I detested the chemo, if this crap comes back, at least I won't have the misery of second-guessing myself as to whether I did enough or not.

I wish you all the best.  The decisions we are forced to make, and at such an emotionally raw time, are just horrible.

Linda

Michelle- was your friend tested for the BRCA gene? To me, *that* is a pretty good indicator of potential recurrance.

Yes, she was tested and she is not BRCA positive, which was surprising because her mom had breast cancer (a single occurrence).  Part of the problem is that they don't know enough yet and may not be testing all the right genes. 

I agree that it is a freaking roll of the dice...nothing more, nothing less.  With a one in eight chance that you will develop breast cancer, that means there is an 88% chance you will NEVER have it.  Yet, here we are.  Until they discover what really causes it.

 Michelle

LRM216- amen to that, especially the "thank God they caught it early" line.

There's something I want to add to my previous post.  I mentioned that current treatment guidelines suggest that chemo be considered for triple negative cancers that are 6mm in size or greater.  Obviously, the counterpoint to this is that current treatment guidelines suggest that chemo is not warranted for triple negative tumors that are 5mm or smaller in size.  Why is this?

Chemo is given to address the risk of mets, and clearly there is still a risk of mets for those who have triple negative tumors that are less than 6mm in size.  As I mentioned in my previous post, even those of us who have microinvasions, tumors that are only 1mm in size or smaller, have some risk of mets.  So if we have a risk of mets and chemo is given to reduce this risk, why isn't chemo recommended for all of us?

The reason is because every treatment comes with it's own risks and side effects.  When the medical experts get together to create treatment guidelines for breast cancer, they don't just look at the risks from breast cancer. They also look at the risks from the treatments.  What the treatment guidelines represent is a balancing act.  The objective is to reduce breast cancer risk (both the risk of recurrence and the risk of mets/death) while not exposing the patient to even greater risks from the treatments themselves.  So in saying that chemo isn't recommended for those with smaller tumors, the medical experts who developed the treatment guidelines are not saying that these patients have no risk of mets. What they are saying is that these patients have a risk level that is low enough that it doesn't warrant exposure to the risks from a treatment like chemo. 

In other words, perhaps 3 out of 100 women who have smaller TN tumors (less than 6mm in size) will develop mets (I don't know the actual number but I'm probably not far off).  If all 100 of these women get chemo, 1 (or at most 2) will be saved from getting mets.  But if 3 of these 100 women suffer permanent and/or serious side effects from the chemo (including conditions such as heart failure, kidney failure and leukemia), then it will be concluded that the risks from the treatment outweigh the benefits of the treatment.  And in this case, the treatment guidelines will say that the treatment is not warranted. 

I thought it was important to mention this because around here we always hear about that one person in 100 person who didn't get a particular treatment but then got mets.  We have to realize why it was that this treatment wasn't given.  It wasn't because anyone thought that it was impossible for this person to get mets.  Rather it was because the risk that they might get mets was lower than the risk that they would experience serious side effects (possibly life-threatening) from the treatment.  I know this isn't the most pleasant of topics but it's important, I think, in light of some of the earlier discussion in this thread.

I had a 1.6 cm tumor and had a mastectomy and chemo...

Ellie, if your total tumor size was 2.7mm, of which 1.2mm was IDC, then you definitely fall well below the line for chemo.  Your invasive tumor is a T1a, but it's just a tiny bit larger (0.2mm) than a T1mic tumor, which is what I have.  With a T1mic, the treatment is pretty much always the same as it would be for pure DCIS, which means no chemo (chemo is never required for pure DCIS).  The one difference for those of us who have these small invasive cancers is that unlike someone who has pure DCIS, we do have a very small risk of distant mets.  This is why the presence of even such a small amount of invasive cancer changes the staging from Stage 0 to Stage I.

Linda, I know what you mean about getting your PhD in triple negative cancer!  That's how I feel about DCIS and DCIS with a microinvasion.  The difficulty for those with DCIS is that there is so much misinformation out there, or more to the point, on this board.  This isn't intentional, of course, but the end result is that women who are newly diagnosed with DCIS or DCIS w/ a microinvasion read this stuff and have the c#@p scared out of them. Sometimes it even leads to changes in their treatment decisions, such as when someone comes here thinking that she'll have a lumpectomy but then decides to have a bilateral mastectomy because of the fear.  Or when someone takes Tamoxifen after a BMX for DCIS - that's a perfect example of a situation where the potential harm from the treatment significantly exceeds the potential benefit of the treatment. 

The reason for all the misinformation about DCIS is simple to understand - it's because so many women on this board have DCIS.  The most common form of breast cancer is IDC, and approx. 80% - 90% of IDC starts as DCIS.  What this means is that most women diagnosed with IDC also have some DCIS.  Their pathology reports will reference both, and their doctors may mention both.  For some reason, it is often the term "DCIS" that sticks in people's minds.  So on this board we see lots of women who state their diagnosis to be "DCIS" and yet they are Stage I, Stage II or sometimes even Stage III.  I read the diagnosis lines that most of us include at the bottom of our posts and I can't tell you how often I see this. If any of these women should unfortunately develop mets, they might say that they had DCIS and then developed mets.  It's not true of course, since their initial diagnosis was really IDC.  Another thing that happens is that sometimes an initial diagnosis after a biopsy is DCIS but then invasive cancer is found (maybe just a microinvasion, maybe more) during the lumpectomy or mastectomy.  This changes the final diagnosis to IDC but sometimes women aren't told this or don't understand this.  I often read on this board about women who have "invasive DCIS" or who say "I have DCIS with some areas of invasion".  These women may still state their diagnosis to be Stage 0 DCIS, but of course it's not. So here again, if any of these women unfortunately were to develop mets, they would say that they went from Stage 0 straight to Stage IV.

I don't know about the women who are currently posting in the Just Diagnosed with a Recurrence thread.  Perhaps they are the 1 in 10,000 who were told they had DCIS but had a misdiagnosis that has now led to mets. Or perhaps in between the DCIS diagnosis and the development of mets, there was a recurrence that developed into invasive cancer.  Or perhaps the initial diagnosis included a small amount of IDC.  What I do know is that in 4+ years on this board, I've seen dozens of women progress "straight from DCIS to Stage IV mets" - some have even been very insistent that this is what happened - and yet upon closer examination, so far this hasn't been the actual situation in any of the cases that I'm aware of.      

Here are some facts about DCIS: 

• While many women have DCIS as part of their pathology, a diagnosis of "DCIS" refers only to those to have pure DCIS.  This means DCIS only, with no invasive cancer of any amount (not even a microinvasion). 
• DCIS is Stage 0 breast cancer.  Anyone who has Stage I breast cancer (or higher) does not have a diagnosis of DCIS (although they may have DCIS in their pathology).  Similarly, no matter how much DCIS you may have (I had over 7cm), even just the tiniest amount of IDC (I had 1mm) changes the diagnosis to Stage I IDC. 
• Stage 0 breast cancer, i.e. pure DCIS, is breast cancer in it's pre-invasive stage. What this means is that the breast cancer cells (the DCIS cancer cells) are completely confined to the milk ducts.  While these DCIS cancer cells can grow and spread within the ductal system throughout the breast (this is why DCIS sometimes can spread widely in the breast), they cannot move into the open breast tissue, they cannot move into the nodes and they cannot move into the lymphatic system (at least that's the current medical/scientific knowledge).  What this means is that Stage 0 DCIS cannot leave the breast and therefore, cannot become mets.
• What DCIS cancer cells can do is evolve to become invasive cancer.  DCIS cancer cells have most of the biology of invasive cancer cells.  With one last biological change, the DCIS cancer cell develops the ability to break through the milk duct. At this point, the cell is no longer a DCIS cancer cell but has become an invasive cancer cell, with the ability to survive and spread in open breast tissue.  It's the same cell, but it has evolved from one state (DCIS, pre-invasive) to another state (IDC, invasive).  When this happens, the diagnosis changes from DCIS to IDC. At this point, mets is possible.
• The dilemma for anyone with DCIS is that there is no way to know when a DCIS cancer cell will evolve to become invasive.  There are certain criteria (grade 3, comedonecrosis) that suggest that a cell might become invasive sooner rather than later but even low grade DCIS can suddenly undergo this biological change and become invasive. That's the risk with DCIS.  As DCIS, it is not life-threatening, but it has the potential to change into a life-threatening cancer at any time.

My apologies now for intruding on the Triple Negative forum with this lengthy discussion about DCIS.   

P.S.  Heidi, I was writing this post as you were writing yours. Thank you!

Thanks everyone!  I'm glad my post was helpful.

Ellie, because I had a microinvasion only, I didn't get chemo.  A 1mm invasive tumor falls well below the 'line in the sand' for chemo.  My tumor was ER+ but because I had a single mastectomy and had such a small invasive tumor, my recurrence risk (both local recurrence and distant recurrence) is low enough that it doesn't warrant the side effects & risks of Tamoxifen.  I could have taken Tamoxifen as a preventative to protect my remaining breast but my oncologist actually recommended against this because he felt the benefit wasn't worth it for me.  I looked into this in great detail and came to the same conclusion.  So no drugs for me.  Also, because my invasive tumor was so small, it was not HER2 tested.  Maybe today it would be, but 5 years ago testing wasn't as common for tumors that small.  Personally I'm glad because I know that HER2+++ tumors are aggressive but I also know that with a small 1mm tumor, my treatment would not have changed at all - no chemo and no Herceptin.  So if I knew that it was HER2+++, I probably would worry more but there'd be absolutely nothing I could do about it.  So in this case, for me, ignorance is better.

As for diet, I try to eat an overall healthy diet. But to be perfectly honest, in the years prior to my diagnosis I was by far the healthiest I've ever been and that obviously didn't do me much good. So now I'm actually less careful about my diet than I was before. I rather enjoy life and if that means having a glass of wine with dinner and occasionally having a steak or some rich cheese, I'll go ahead and I won't feel guilty about it.  I decided that I won't let cancer take that enjoyment away from me.  My approach is "everything's allowed, in moderation".  That might not work for other women, but it works for me.

Ellie-- I was doing the same as you four months out...in addition to maintaining a 20% low-fat diet.  I think time puts more perspective on things as our stress level lowers and our fears become more manageable.

Ellie- I hope your dinner plans include a large steak, potatoes, several large drinks and, finally, cake.... lol