Micro-invasion and future possibilities

Take a deep breath.  Many deep breaths.

Can DCIS-Mi develop into mets?  Yes, that can happen.  A microinvasion is invasive cancer, and invasive cancer cells have the potential to move into the body, either through the nodes or through the vascular system (the blood stream).  So it's possible.  But the risk is only about 1%.  And in fact the long-term survival rate for DCIS-Mi is only 1% lower than the long term survival rate for pure DCIS.  The survival rate for both is in the high 90% range (97% - 99%).

You have to be careful when you read this board because a lot of the case history that you read is not accurate.  Someone might say that they had a diagnosis of DCIS and then went on to develop mets. In fact a lot of people say that. But when you dig into it, you realize that it was only their initial biopsy that showed DCIS but then they had surgery that uncovered a significant amount of invasive cancer and maybe even positive nodes.  So DCIS was a preliminary diagnosis only and in fact right from the start they were known to have invasive cancer.  Or perhaps it's a situation where someone had an initial diagnosis of DCIS but then sometime later had an invasive recurrence.  At that point, they had invasive cancer, not DCIS.  Another thing that often happens is that women are diagnosed with a combination of DCIS and IDC (very common) and yet they state their diagnosis to be DCIS. The giveaway might be if they say they had chemo, or if they list their diagnosis as being "DCIS Stage II" (anything other than Stage 0). 

Those are examples of what you see here every day with DCIS, and the same is true when it comes to DCIS-Mi.  A microinvasion technically is an invasive cancer that is no more than 1mm in size, but the term "microinvasion" is used very loosely around here - I've seen women with 5mm or 8mm invasive tumors say that they have just a "microinvasion".  Or again, there are cases where someone's biopsy showed DCIS-Mi but their surgery uncovered more invasive cancer, yet they state their diagnosis to be DCIS-Mi.  

It's hard to tell someone that they don't understand their own diagnosis, but the fact is that a lot of people don't understand their own diagnosis, or at least don't communicate it clearly.  So while I know that there are a couple of cases here where women with microinvasions have advanced to Stage IV, most of the situations that you read about aren't stated accurately.

Now, to some of your questions:

"If it's in the node, is it stopped there, as the node is a filter for
holding/stopping these things, or does it mean it may have gone on
elsewhere before being removed in lumpectomy?"  It's impossible to know.  However if cancer cells have entered no more than 2 or 3 nodes, the cancer is still considered early stage and the survival rate is high.  However it's important to note that often chemo is often prescribed in these types of cases.  The role of chemo is to track down any cancer cells that might have progressed into the body and kill off those cells before they can take hold and develop into mets.

"Does not removing a positive SLN (or poss. other affected nodes) mean
the cancer in that node, left there, can travel from the node into the
general system, or does it stay in the node by definition? RO says
incidental radiation when I get rads on breast would likely eradicate
cancer in the node if it's just in the one, presuming they don't do the
SNB."   If there are cancer cells in a node, they might stay put, or they might not.  My understanding is that rads given to the nodes is effective at killing off rogue cancer cells that might be in the nodes - but of course there is no guarantee. 

"They're telling me the only SNB benefit would be deciding whether
to do chemo, and they wouln't do that anyway for a micro. Why not,
especially if micro turns out to be HER2+ (pending)"   With just a microinvasion alone, whether it's HER2+ or not, you won't get chemo. That's true.  However if you have positive nodes in addition to the microinvasion, and particularly if you have a positive node and the cancer is HER2+, then chemo likely would be prescribed.  So I don't understand the rationale of your doctors on this one. 

"Also saw under another catagory a woman who went to Dr. Lagios (no one
is perfect) 15 years ago, he said what the docs had thought was a micro
wasn't, and now she has stage 4. How do you go from micro stage 1A to a
stage 4, if it's the same cancer? Must that have been a different, or
more, missed cancer originally?"  Any of those things could have happened. This could be a case where the individual did have pure DCIS but later developed an invasive recurrence.  Or she might have had pure DCIS but then she developed another primary breast cancer (an invasive cancer) sometime later and this second cancer caused the mets.  Or Dr. Lagios might have been wrong and she did have a microinvasion.  Stage IA can progress to become Stage IV.... any invasive cancer can spread into the body and become Stage IV.  But that's back to the 1% risk that I mentioned right at the start.  Stage IA T1mi has approx. a 1% chance of developing into Stage IV mets.  There is no way to know what really happened without questioning the individual, and even then, you might not get all the right or relevant facts. 

"And not understanding how there can be, in my case, a micro in a 4mm
area of no high-grade DCIS with no necrosis. Unusal, but possible?"  Yes, unusual but possible. "Also, they're telling me they think I've had this good-kind DCIS just
6-12 mo. Thought it took years for a micro to develop in DCIS. How did
that happen, then?"  One of the big mysteries is why some DCIS converts almost immediately to become IDC and develops
from that point on as IDC, while other DCIS develops and spreads within the ducts as DCIS
and never becomes invasive, or perhaps just a small amount of cancer breaks through the duct after many years and a microinvasion develops. 

Approx. 90% of IDC starts as DCIS. In most cases of
IDC, whatever the grade, some amount of DCIS is also found. Usually the DCIS is the same grade, but not always. Most often when the diagnosis is IDC, what's found is just a
very small amount of DCIS mixed in with a much larger amount of IDC. So in
these cases it would appear that the DCIS broke through the duct to become IDC very early on, and at that point the DCIS stopped developing
within the ducts and only the IDC cells continued to multiply and spread.  Percy, this might be what would have happened in your case, had your cancer not been caught when it was.

Then there are cases like mine, where a
very aggressive DCIS spreads throughout the ductal
system for years, and at some point in just one area a small amount of
the DCIS breaks through the duct wall and becomes IDC. Once my microinvasion developed, if I hadn't had surgery, would I have developed a lot more IDC?  Or would my cancer have continued to develop as DCIS, as it likely had for years, with just that one tiny microinvasion?  

So those are two completely different models that both result in a diagnosis that includes a combination of both DCIS and IDC.  Both start as DCIS, but in one case the IDC takes over almost immediately and becomes dominant, and in the other case the DCIS always remains dominant.  When a biopsy diagnosis is DCIS, we assume it's the second scenario.  But sometimes it's not; sometimes it turns out to be a case of IDC with just a small amount of DCIS.  If your cancer had not been caught when it was, how would it have developed?  Would it have become predominantly IDC, or would it have remained predominantly DCIS? I don't think there is any way to know.

"My elbows have been hurting 4 mo., thought it was tendinitis from
waitressing (and when I move the soft tissue away from the bone and just
feel the bone, it doesn't hurt, so it probably is) , but knowing I had
even a small invasive cancer for I don't know how long, I'm now worried
about everything."  It sounds like tendinitis.  But it's normal to worry about everything.  I remember after I was diagnosed, I started to notice every ache and pain and I immediately worried that it might be mets.  And every time I got a headache... it was mets!  Honestly, it took me about 9 months before I stopped thinking that way.  I clearly remember that there was one day when I had a headache, I took an Aspirin and later that day, after the headache was gone, I realized that I hadn't once thought "mets!"  That's when I knew that I was putting my diagnosis behind me.  It was a big day!  Over those 9 months or so, I found that I couldn't stop the thoughts and worries from entering my mind, but as soon as I was conscious of the thoughts, I would figuratively give myself a little slap upside the head and remind myself that it was just the fear talking and it was silly to have these fears. I got really good at talking myself down within a couple of minutes. 

As for the SNB, I am of the belief that removing lymph nodes unnecessarily isn't a good thing to do.  Why put yourself at risk of lymphedema, and put yourself though all the precautions that you may want to take for the rest of your life (no blood draws or needles on that arm, for example) if there is no reason?  Personally, I would not have an SNB if I was having a lumpectomy for DCIS.  I also would not have an SNB if I was having a prophylactic MX.  But your case is different.  With a microinvasion, you have invasive cancer and that means you could have nodal involvement.  It's not likely, but it's possible and it would change your diagnosis and it would change your treatment.  I had a microinvasion, and I had the SNB. My doctor was insistent on it.  Knowing my nodes were clear provided me with tremendous reassurance - with that news, I knew that my prognosis was virtually the same as it would have been if I'd had pure DCIS.  You are very stressed about the microinvasion and I suspect that the recommendation of your doctors that you not have the SNB is adding to your stress, because it leaves some questions unanswered.  Their recommendation is unusual, and I wonder if what might be behind it is that they question the pathology.  Perhaps they think that the microinvasion might not be a real microinvasion, but is more likely to be displaced cells.  If that were the case, I could understand the recommendation.  Otherwise, honestly, I don't.

Edited for a typo only.

Hi Percy, of course Beesie (and you have covered all of the bases.)  I just want to make one comment.  You said that the RO mentioned that incidental radiation would get to the nodes during radiation.  Beesie commented that radiation to the nodes (axillary area) gets at nodal involvement.  That is true, but what the RO said is "incidental radiation".  I work in a related medical field, and the term incidental  implies that radiation to the breast would incidentally find it's way to the node (s) and irradicate (irradiate) the problem.  I would definitely ask about that.  It seems that they wouldn't have a plan to irradiate the area with the nodes, but the radiation would possibly touch on that area.  I was told that radiation is very very carefully mapped to only get the area in question (the breast).  Yes, sometimes there can be some stray events (mainly affecting the areas near or under the breast, such as a tiny area of the lung..very very, very small effect).  They do SEPARATE mapping to prepare to treat the axilla, and that area is separately treated, which just usually isn't done with DCIS.  I agree with you and Beesie that you have stress regarding their desire to skip the SNB, and it is legitimate stress (not you overreacting). Perhaps you can get the "team" to have a meeting to discuss your treatment plan, with your input included.

About those women with DCIS going on to Stage IV; again, Beesie covered it really well.  I just want to add that sometimes people do not do the full recommended treatment plan, and potentially put themselves at risk for a bad outcome later.  Mostly, as Beesie noted, it happens when there is a recurrence which is invasive, and then that recurrence is found to metastasize.  I am not passing judgment on people,  because I, myself, have not yet begun hormonal treatments (Tamoxifen, AI's) because of legitmate concerns about side effects. 

Hi Percy, if the RO thinks that SNB is a good idea, could you ask him/her to discuss this with the rest of the team?  I would also go to the National Cancer Care Network Guidelines (as provided by Beesie) and review the required treatment for microinvasion, as well as the 10 percent chance of micrometastasis to the nodes, and present the data to the docs.  They should be pretty tough, and there's nothing about your questions that seem in any way crazy, neurotic, etc., especially if backed up by data.

About whether cancer can spread elsewhere without invading the nodes, the answer, unfortunately, is yes.

Is all of this likely to be happening to you, not at all.  You just need the reassurance that the nodes are negative.

Yeah, what Beesie said!!!  

Hi, Percy4... you're right. This is your whole life right now, and I'm sorry. As you continue to gather more information about your diagnosis and treatment plan, you will be moving into the "starting to get things done" mode... which eventually leads to seeing your BC experience as a bump in the road in your rear-view mirror.

Two years ago I was diagnosed with multifocal DCIS in the left breast. One area of DCIS had two micro-invasions of IDC: 1.5mm and .5 mm. Because of personal history and a host of other reasons (including uncertainty about the right breast on the part of my Radiologist), I chose a bilateral MX with immediate recon.

At the time of my surgery, I had no idea whether or not I would need radiation (if the tumors were close to the chest wall, or they couldn't get clean margins) or whether or not I would need chemo. I did have an SNB and the nodes were clear. I dodged both rads and chemo. The interesting thing is that no IDC was found in my final path report. They said it must have all been removed by my two ultrasound-assisted core-needle biopsies. In the past two years I have not developed any lymphedema whatsoever.

Unfortunately, women with my dx do go on to become Stage IV. It is a reality of breast cancer - there are no guarantees.

But here is my situation: I believe the cancer was removed from my body on December 5, 2011. I believe that I am staving off a recurrence by taking an Aromatase Inhibitor for five years. AND - my MO says my chances of a recurrence are LESS THAN one percent. But she always laughs and says -"But they're not zero, so I want you to take the drug."

Today I believe I am cancer-free. I plan to be cancer-free in the next five years and the next ten years and when I am 90 years old. If anything changes in the future, I'll deal with it then. In the meantime, I'm moving on.

Wishing you a rapid recovery and most of all, peace of mind. Big hugs to you!!!

Just want to add, this is a beautiful picture that you have posted of yourself.  See, you are braver than some of us, to put an avatar up (I think that's what it's called. I'm definitely not a techy).

You have come to some amazing insights, that will surely help you face the challenges ahead.

Once, again, I agree with Beesie that we have the known risks and the unknown risks, with bc and with life, and we've just gotta keep putting one foot in front of the other.  You will get to the other side of this!  And we'll be there for you, in whatever way is helpful to you. 

Percy, ditto to what ballet12 said - your picture is beautiful. I
just can't figure out how it is that you have a daughter who is almost
40!

I don't think you are being needy. I think you are asking the
right questions. As ballet12 said earlier, when things are
straightforward, at most one second opinion is necessary. In your case,
things are definitely not straightforward. Your diagnosis is unusual -
the fact that you have this microinvasion in with such a small amount
of non-aggressive DCIS - and the answers and recommendations that you've
been getting from your doctors are confusing and inconsistent.  So of course you have lots of questions and are struggling with the decisions. 

I've been thinking about your situation with the SNB, and more particularly, your doctors' recommendation that an SNB is not required.  One possibility, as I suggested earlier, is that your doctors may think that the microinvasion isn't really a microinvasion but was caused by displaced cells.  The other possibility is that although on average the risk of nodal involvement is 10% for those who have a microinvasion, your doctors may believe that your risk is considerably lower because you have such an early, undeveloped cancer - just 4mm of non-comedo DCIS along with that microinvasion.  

I think that's certainly possible.  Your risk of nodal involvement might be quite a bit lower than the 10% average.  But there is another possibility that you also hit on that's been rattling around in my head.  What you said was:

"I will say that the fact that my micro appeared so soon after DCIS
(especially if it's assessed to be HER2+) makes me want the SNB even
more. Wouldn't you agree, if the invasive cancer was aggressive enough
to be there so soon after DCIS?"

Yes, I would agree. One of three things has happened in your case. The first possibility is that you really didn't have a microinvasion, but just had displaced cells.  Since your biopsy sample was suspicious for a microinvasion and your surgical sample included a microinvasion, I am doubtful that this is the case.  The second possibility is that it's a complete fluke that your microinvasion developed in with this small amount of non-aggressive DCIS and you really do have a harmless cancer that has a very little chance of nodal involvement. The third possibility is that you caught this sucker at the earliest stage of development, but had you not, you would have developed more IDC, and the small amount of DCIS would have become incidental to the IDC diagnosis.  In this case, the IDC might be quite aggressive and could present a real risk of nodal involvement. 

Which is it?  I think it's impossible to know.  I believe your doctors are banking on the first or second possibilities, and I'd guess that the second one is probably the most likely.  But if it were me, I'd be wondering about the third one, and that's what would lead me to choose to have an SNB, as much as I would prefer not to have an SNB done.

I guess the one thing I would do first would be to really probe my doctors on this, to get a better understanding of why they say the SNB isn't required.  As ballet12 suggested, I'd go in armed with the NCCN guidelines, which do not distinguish between T1mi tumors vs. any other T1 tumor when saying that an SNB should be done in any case where invasive cancer is found in with DCIS.  

(((Hugs))). 

Hi Percy,

Please don't feel the need to apologize or defend what you say here.  We understand.  It's perfectly understandable that someone would be concerned about the appearance of their breast.  Surgery on a body part, particularly one with such symbolic significance as a breast, is a very scary thing for all of us.  You have said that you are single.  That, alone, would justify concerns, and not just "vanity".  I am not single, so I was able to plunge into multiple surgeries which did ultimately leave significant cosmetic /physical changes that others might not tolerate.  I see those changes every day, and even though it was my choice, it is taking time to adjust. I know where your concerns come from. They are real and you are not vain.  You are a woman.  Period.

Second, we are here to support you in your treatment decisions.  We can guide you, and Beesie can really provide you with the very detailed information you need to make a decision.  Ultimately, it boils down to you really going deep into yourself and deciding which are the risks you are willing to take.  If you don't do the SNB, will you be plagued about it, paralyzed by fear and unable to move on, or will you just try to absorb that risk and move on?  If you do the SNB, will you be willing to take the precautions to try to avoid or mitigate lymphedema, and will you be able to face the risk of getting it?  Sorry you have to deal with all this on your birthday and Christmas eve.  What might help, and what has helped me with the hormonal treatment issues, is to imagine myself after making the decision.  Which of those images gives you a bit more comfort, is a bit more tolerable to envision?  That's probably your answer. I wish you the courage to confront the doctors and try to get some straight answers. I would find that task very daunting.  I hope the second and third opinions make this easier for you.

All the best.