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Continuing the discussion... DCIS to Stage IV progression

There is a thread in the Stage IV forum that has caught the attention of a number of the DCIS women, and has raised a lot of concern. Although I have been posting in that thread, I don't feel that it's appropriate for a group of DCIS women to be discussing DCIS in the Stage IV forum. I requested to the DCIS women in that thread that the discussion be brought over here but that doesn't seem to be happening.  So I will bring the discussion here.

The individual who started the thread is someone who was initially diagnosed with DCIS and who then progressed to mets without any recurrence in between. She was told by her doctors that her situation was very unusual. Her question - a very good question - was whether there were others who were Stage IV who also had progressed directly from DCIS. There has been an active discussion.  I will include here only my inputs to that discussion.

Here is my first post from that thread:

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Sorry to intrude on the Stage IV forum but the subject of this post is something that interests me and that I've done a lot of reading up on.

The presence of any amount of invasive cancer, even a 1mm microinvasion, changes the diagnosis from pure DCIS (which is always Stage 0) to DCIS with a microinvasion (DCIS-Mi), which is Stage I. And as soon as there is any IDC present, even just 1mm, there is a future risk of mets. That's my diagnosis and that was very clearly explained to me.

In addition to the approx. 15% of women who are initially thought to have DCIS but who are found to actually have Stage I DCIS -Mi, it's estimated that up to another 10% of women diagnosed with DCIS in fact had a microinvasion hidden in the middle of the DCIS that was never found. This means that approx. 10% of women who think they have pure Stage 0 DCIS actually have early Stage I invasive cancer. This is the reason why women who seem to have only DCIS can end up with positive nodes after an SNB (just having a tiny microinvasion leads to nodal involvement in 10% of cases). If an SNB is done, usually it will catch the invasion, even if the microinvasion was never found in the breast. Of course sometimes the cancer cells move into the body through the bloodstream, so having an SNB isn't a perfect guarantee either. I did the math on this once, using the best data I could find, and I figured out that the odds are about 1 in 10,000 that someone who has DCIS and a clear SNB will develop mets due to an undetected microinvasion. If someone has DCIS and doesn't have an SNB, the odds are about 5 in 10,000. Those are obviously very low numbers but if you consider that in the U.S. approx. 50,000 women per year are diagnosed with what appears to be "pure DCIS", it means that of those diagnosed every year, approx. 13 (assuming that about 60% get SNBs) will develop mets at some time in the future due to a microinvasion that was never detected.

Edited to add: Just to clarify, based on current medical knowledge, DCIS cannot metastasize. In those very rare cases where someone initially diagnosed with pure DCIS (i.e. no microinvasion) is later found to have mets, the culprit is assumed to be a microinvasion that was never found. Many of us had very large areas of DCIS; as I said, I had over 7cm. Finding a tiny 1mm microinvasion in the middle of all that is a bit like finding a needle in a haystack. So the fact that about 10% of microinvasions aren't found isn't all that surprising; it's actually more surprising, and very fortunate, that so many of the microinvasions are found.

Again, sorry for the intrusion but I hope that some of this is helpful. 

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I added the following in a subsequent post:

One additional clarification to my earlier post. The info I provided about the number of women who may develop mets after a DCIS diagnosis is just my guesstimate. Most of the data I used is from scientific studies but there were a couple of data points that I had to estimate. I used the closest scientifc data I could find but I'm sure that it's not completely accurate. So it's not the actual numbers that are important but the overall conclusion, which is that it's rare to find situations where breast cancer seems to progress directly from DCIS to Stage IV but it is going to happen to a very very small percentage of women. The reason, as MJ put so clearly, is because these women really did have invasive cancer, even though everyone thought that they had pure DCIS.

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A number of women have some forward in that thread stating that they too progressed directly from DCIS to Stage IV.  I know that this has raised concern among a many women with DCIS.  I posted as follows (I've removed the names of several of the individuals I referred to):

Let me try to clarify some of this discussion because there are some incorrect conclusions being drawn here.

XXXXXX, you mentioned that there was "one little invasive spot" found during your biopsy. It was a 2mm microinvasion. A 2mm invasive cancer is actually a T1a tumor - it's larger than a true microinvasion. T1a tumors are Stage I, not Stage 0. Your signature line also indicates that you were HER2+. So even though you had 9cm of DCIS, at the time of your initial diagnosis, you also had a small amount of IDC and the pathology of that IDC was concerning. This is different than a diagnosis of pure DCIS.

XYXYXYX, pure DCIS is always Stage 0, regardless of how much you have and regardless of the pathology. This means that if you were told that you had Stage I breast cancer, there had to have been an invasive component within your tumor in addition to the DCIS. You also would not have had chemo or Herceptin if your diagnosis had been pure DCIS - these are systemic treatments which are not given to someone with pure DCIS (because DCIS cannot move beyond the breast so there is no need for a systemic treatment). In fact Herceptin is not approved for those who have only DCIS. 

From what those posting here are saying about their diagnoses (not just XXXXXXX and XYXYXXYX but some of the others too), it's clear that most of the situations presented here as being examples of DCIS going straight to Stage IV in fact are situations where there was a known invasive component right from the start. So these were cases of Stage I BC progressing to become Stage IV.

For all of the DCIS women who've popped into this thread, you are getting frightened for no reason. The type of situation that JMEH31854 described to start off this discussion is possible, but it is extremely rare. Most of the other examples presented here are not the same thing. Of course you should always be vigilant but you should not spending your time worrying about something that is so unlikely to happen.

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Following this, there were a couple of other responses, one stating that DCIS can be Stage I and another stating that even with a microinvasion, DCIS can be Stage 0.  The following was my response (which has been "Removed by the Community" but obviously didn't violate any of the rules of the board):

DCIS can be Stage I when it is DCIS-Mi, i.e. DCIS with a microinvasion. Pure DCIS is always Stage 0. The AJCC staging guidelines (U.S.) and UICC staging guidelines (International) clearly explain how DCIS is staged. Staging is done to global standards so that it is consistent all around the world.

Erica/Daisy/Janewell/whoever, please be respectful and leave your personal axes (as in axes to grind ) in other forums. To the Stage IV women, I apologize again for coming to this thread. Unfortunately I know that there are DCIS women reading this who are being scared out of their wits and I think it's important that the facts presented be accurate.

Edited to Add: XXXXXXX , your post came in while I was writing mine. My comment about taking this discussion to the DCIS forum was specifically directed at the DCIS women, not anyone else. There have been many threads in the past in which Stage IV women have requested that those who are not Stage IV please not post in their forum, except to offer support. I was trying to honor that request. As for the Staging discussion, I have read probably 50 or more articles about the staging of DCIS and DCIS -Mi. Every one is consistent. If an individual doctor chooses to differ, that's their perogative, but it doesn't change the staging as defined by the AJCC and UICC. And whether your cancer was defined as being Stage 0 or Stage I, you did have a 2mm microinvasion, and microinvasions can spread. Mine was only 1mm - and it too was found during my biopsy - but my surgeon told me I had a 10% chance of nodal involvement (I've confirmed this by reading a number of studies) and even with clear nodes, my oncologist told me I had approx. a 1% chance of mets.

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I wanted to repeat my parts of the discussion here because I know from numerous comments that the discussion is frightening some DCIS women and I think it's important that everyone have have their facts straight.  The information that I posted is well established, well documented fact. 

  • DCIS does not metastasize.      DCIS is Stage 0.        If any amount of invasive cancer is present, even just a microinvasion, the diagnosis is changed to Stage I.       Microinvasions are sometimes missed but the likelihood that this will result in mets is extremely small. 

Those are facts. I encourage anyone who is unsure about any of these facts to talk to their doctors and/or search the internet for reliable sources of information about DCIS.     

I think it would be great if we could continue the discussion here.  

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Comments

  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2011

    Glad that there is a record of this.

  • crazy4carrots
    crazy4carrots Member Posts: 624
    edited February 2011

    Beesie - so glad you reposted.  I've recommended your DCIS posts to my onc and her nurses for all new patients dx'ed with DCIS.  They've read some of your posts and are stunned by the amount of good research you do on the subject.  Congrats!

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited February 2011

    I'm glad you saved all the posts ... great information in them, as I had DCIS, LCIS and IDC.

    Bren

  • bookart
    bookart Member Posts: 210
    edited February 2011

    Beesie - thanks for your info.  I saw the beginning of this thread but didn't pursue it.  My mother was diagnosed in 1991 with grade 3 DCIS - I'm afraid I don't know all the details, but we were told at the time that it was not invasive, no node involvement, no "tumor" as such.  She had what was called a modified radical MX - they took about 20 nodes (pre - sentinel node biopsy) since there was no discrete tumor to remove. In 1995 they found mets to her bones, which eventually spread to her brain lining and then brain.  She died in 1997. 

    Now, it was very possible that they missed a micro-invasion, but mammograms and exams every 6 months also missed any recurrence, or there wasn't one.  Of course, that was 20 years ago - digital mammograms and other diagnostic tools are better now.  Her bc was also ER- (not sure about PR and HER2) - tamoxafin was around then but did her no good.  There are also other treatments now which might have helped.  At any rate - the appearance was that she went from DCIS to Stage IV with no recurrence.  Which may not be the case...I'm not trying to muddy the issue - it's just hard to tell sometimes. 

    Something causes some DCIS to morph into IDC/mets - what is it?  And how can we tell whether one person is in that rare 1% (or less)?  I totally agree that it's not worth turning your life into a death watch over that 1%, but I sure wish there was some dx criteria for that.  But there isn't.  Even the drs don't know.

  • mom3band1g
    mom3band1g Member Posts: 87
    edited February 2011

    I saw tht thread but didn't 'comment' as it was stage IV.  It did scare the you-know-what out of me.  I had several positive chest wall margins but I did do rads...so glad I did after readint that post.  I do try not to live with the 'what -ifs'.  I have to live my life and I do tell people I am cured.  I have to believe that.  I know it's very rare for something like that to happen I just cannot live in fear.  I'm too young!

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited February 2011

    Beesie - as usual, a well thought out and sensbile post.

    Sue

  • Deirdre1
    Deirdre1 Member Posts: 22
    edited February 2011

    I saw the Stage IV comments too, but because of the severe nature of Stage IV I just don't post there...  I can see how that thread might be concerning to individuals with DCIS, but in my experience if I read the DCIS posts here (and of course ESPECIALLY Beesie's posts), along with my own research, I am aware that very often people will refer to DCIS when actually they are referring to Stage 1.  It never dawned on me Beesie to move the thread over to this forum - once again you are really thinking (and supporting).. Thanks!

    If there is anyone in Stage IV that wants to continue this conversation with DCIS womenthey are most certainly welcome here!  I, for one, would appreciate any thoughts or concerns they have on the progression of their disease.. 

  • mantra
    mantra Member Posts: 189
    edited February 2011

    JBinOK, my thoughts exactly. I know that pathology doesn't check every single cell so there is a chance something could be missed. I guess it's rare and we have to take comfort in that.

    Beesie: Do you know what % of tissue is actually checked during the pathology? How do they decided what areas to check and what to skip over? I imagine they concentrate on the area where the DCIS was found and the surrounding tissue. But how much of the other tissue is actually checked? As you said, the OP must have had a microinvasion that was missed. Was it missed because that portion of the tissue was not checked? Do they only check an area if it looks like it could be cancerous?

  • xtine
    xtine Member Posts: 15
    edited February 2011

    I read the original post and couldn't help but freak out a little as well, despite all logical reasons not to. I'm glad this has been moved here - if I was in the original poster's place, I wouldn't want to hear about all the people wishing they weren't me...

    To the people worried about a missed microinvasion, I think it's important to remember that even if they found a microinvasion, it probably wouldn't change much. Most likely, you wouldn't need chemo, it wouldn't change whether you need radiation, and your prognosis would still be extremely good. And with our without a microinvasion, they would probably still recommend hormonal therapy for ER+, and they would still recommend regular follow-ups.

    I think the lesson here is to take your diagnosis, even if "just" DCIS, seriously, and to keep up on screenings. But let's try very hard not to panic.

  • susanlouise
    susanlouise Member Posts: 4
    edited February 2011

    Very interesting! Thanks so much for info! 

  • kittymama
    kittymama Member Posts: 25
    edited February 2011
    Dearest Beesie, you are so logical and reasonable!  Reminds me a bit of Spock from Star Trek.  I mean that in a good way.  Wink
  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2011

    I'm glad to see that things have settled down from last evening.  First, a sincere "Thank You!" to the Moderator.  I requested that she review my deleted post and I'm delighted to see that it has been reinstated.  It's bad enough when posts that state opinions are being deleted but when posts that present widely supported medical information are being deleted, that's beyond silly.

    Thank you as well to all who've offered their support to me, both in this thread, the other thread and in PMs.  It seems that this week I can't stay away from controversy, even when I'm presenting the most basic of information.

    I'm so glad that some discussion is starting in this thread.  The risk of mets is something that we can't hide from - as soon as we hear the word breast cancer, most of us probably think of the possibility of mets.  It's not something that is discussed here often though, for pretty obvious reasons.  As a result there is a lot of misunderstanding.  I hope that having an open discussion and sharing what we've been told by our doctors and what we've learned by doing our own research will be helpful to many of the women with DCIS or DCIS-Mi.

    bookart, I am so sorry to hear about what happened to your mother.  Yes, it can happen - there are women who have what appears to be pure DCIS who do go on to develop mets.  That is exactly the scenario that was presented to start the discussion on the Stage IV forum.  The fact that this can happen is concerning and it's real.  

    For me, being the logical sort, the next step is to break down how this happens, and how often this happens.

    Current medical understanding would suggest that the "how this happens" is that a microinvasion is missed in the original pathology.  So it's not that the DCIS progressed to become mets.  It's that some of the DCIS cells had already evolved to become invasive cancer (which we all know it can) and some cells from that invasive cancer had already moved beyond the breast before the entire area of cancer was removed.  DCIS cannot metastasize.  IDC - including just a tiny 1mm microinvasion - can.

    The answer to the question "how often does this happen?" is more difficult get a good handle on. So let me play a bit. 

    Let's start with a group of 10,000 women, all diagnosed with DCIS.

    • It is estimated that about 10% of women have microinvasions that are missed (1,000 women affected).
    • It's fairly well established that 10% of microinvasions lead to nodal involvement.  So this means that approx. 1% of all women diagnosed with DCIS will have missed microinvasions that result in nodal involvement (100 women affected).  
    • If an SNB is done, the nodal involvement will be caught there.  But not all women with DCIS have SNBs; if we say that 50% do (I actually think the % is higher), this means that a 1/2 of 1 percent (0.5%) of women diagnosed with DCIS will have a missed microinvasion that leads to nodal involvement that is also not detected (50 women affected).  
    • In how many of these cases will this to mets?  I have no idea but I do know that women with invasive cancer and small amounts of nodal involvement are still considered "early stage" and have a high survival rate. And this is the earliest of early stage invasive cancer - an invasive cancer that is so tiny that it wasn't found. So will 5% of this group develop mets (2.5 women affected). Or 20% (10 women affected)?  Or something higher or lower?
    • And then for all the 10% of DCIS women with missed microinvasions, there is the risk that some of the cancer cells may have moved into the body through the vascular system rather than the nodes. Having had a microinvasion myself (luckily mine was found), and having had a clear SNB, what I was told was that my risk of mets with such a small invasive was less than 1%. Since my nodes were clear, this would represent my risk of vascular invasion.  So if we assume the same risk level for the 10% of women who have missed microinvasions, it means that fewer than 0.1% of all women with DCIS face the risk of vascular invasion from a missed microinvasion (fewer than 10 women affected).

    Adding it all up, it means that at the high end, possibly 20 of the 10,000 women diagnosed with DCIS might develop mets from an undetected microinvasion (and someone please check my math!). That's 0.2%.  If I don't use all the high end estimates, what's the number?  Maybe as low as 5? I don't know.  But I do know that the risk is very low.

    Here's the thing though. It's not as if nobody will be affected. The risk might only be 0.2% but there will be women who are affected. bookart, your mother was.  The woman who started the post in the Stage IV forum was (but most of the others who joined in were not, as they did not have a "pure DCIS" diagnosis).  

    So what do we do?  Maybe it's just me, but I don't think it makes sense for anyone to worry about something that has a 0.2% chance of happening.  Given that every treatment and test presents it's own risks, personally I wouldn't have any treatments or tests for this, unless there was a particular reason why I felt that it was necessary.  The fact is too that if a tiny microinvasion has passed a few cancer cells through the bloodstream into the body, it probably will be years before the area of cancer is large enough to be detected by any test. Is there any way to know who among us might be higher risk?  From what I've read as I've been researching this, there are scientists working on trying to understand if there are markers that can tell us who is at more risk but at this point I don't think there is anything.  

    And I simply don't think that something that presents such a low risk is a reason to worry.  On the other hand, the risk is real and no one should think that they are 100% safe.  So never skip your mammos and/or MRIs and if something is bothering you, get it checked out. Don't assume you have no risk.  But don't live your life worrying about this.  That's my advice and that's how I live my life -and I had a known microinvasion. 

    Thoughts? Comments? Disagreements with my numbers or my math? Other ways of looking at it?   

  • rianne2580
    rianne2580 Member Posts: 10
    edited February 2011

    Beesie, the key is "missed microinvasions." For all the years I was happily living and thinking all the mammograms I've had and no DCIS recurrence or any sign of anything...17 yrs. Then out of the blue something lights up on the MRI. Important to note, I had an MRI 2 years ago for bone spurs in my cervical spine. That MRI picked up lots of other things in my body, thyroid nodule for one. The MRI 2 yrs ago did not pick up anything in my breasts. I'd say somewhere between 2 yrs. ago and now it grew. Or was it there and not picked up?

     We can only rely on the very best science can give us to catch these things. There are the cases where women live their entire life with cancer that is dormant or has not spread anywhere. Nodules, tumors, fatty tissue, lumps, bumps all potentially cancer. This is an extremely active blog that is almost more informative than doctors. And Beesie, you lead the way. 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2011

    I just scanned the original thread on this topic in the Stage IV forum to see if anything new had been added.  JMEH31854, who started the thread, has added an interesting post.  I hope that she doesn't mind that I'm repeating it here.

    What she said was that her doctor told her that her progression from DCIS to Stage IV might have been from a missed microinvasion (as per my discussion above) or might have been caused by a chest wall recurrence that was never caught.  That's a really important point. It reinforces how important it is to get your check-ups.  Just because you've had a BMX, do not assume that you no longer need to check your breasts for lumps.  And talk to your surgeon or oncologist to see if you can get approval to get breast MRIs - I recall reading somewhere that they are recommended every 2 years for those who've had a BMX because they are the best way to catch a local area recurrence early after a BMX or BMX with reconstruction.  

    1% - 2% of women who have a BMX for DCIS or DCIS-Mi will have a recurrence or develop a new BC. The risk is low so for those who have had a BMX, I don't think that this is something that you should worry about.  But it again highlights why it's so important to remain vigilant and to be diligent in doing breast/breast area self-exams and getting your check-ups on schedule. If you have a recurrence and it's caught early it might have no impact on your prognosis.  But if you don't catch it early, your prognosis can change completely. 

  • mantra
    mantra Member Posts: 189
    edited February 2011

    I've had a BMX for DCIS. My doctor is in Toronto at PMH and she said she does not do follow up MRI. I've asked twice and both times she said no. My other breast cancer surgeon also said no. I know that both surgeons removed the fascia against the chest wall. From what I'm told, it's the way the surgeon ensures they have removed every bit of breast tissue against the chest wall. Yet, this entire thing makes me nervous since I'm not having any screening other than checkups with the surgeon.

  • mom3band1g
    mom3band1g Member Posts: 87
    edited February 2011

    I had a mast and rads for DCIS but my rads onc gave me a 4% chance or recurrence.  While I know this is excellent any guesses as to why not 1-2% that most women get?

  • mantra
    mantra Member Posts: 189
    edited February 2011

    I didn't have rads. I was told I would only need rads if I had a lumpectomy

  • mantra
    mantra Member Posts: 189
    edited February 2011

    JBinOK, she won't authorize any MRI  . .  period! It really does make me nervous. She just keeps saying that IF I had cancer, it would be pushed to the front because of my reconstruction and would be easily visible at that point.

    I also just hopped over to read the posts on stage IV forum (same topic) and I see that Beesie said that the new protocol is to have rads with a mastectomy only if you don't have clean margins. So regardless, I wouldn't have had rads even with today's new protocols. 

    I personally do not feel comfortable posting on the stage IV forum and I for one, am happy the topic was brought over here as well.

  • Shrek4
    Shrek4 Member Posts: 519
    edited February 2011

    Mammograms aren't done after BMX because there is no breast tissue left, not MRI.

    After BMX, MRI is the one they use to check for recurrences, as well as PET/CT scans. The MRI will not be done anymore on the special breast MRI machine, but on a regular one. MRI in breast reconstruction is also done because the implants have to be checked every two years.

    I don't know how would you feel/see a recurrence in a regular reconstruction, mine was skin-sparing and the BS said it would only come right under the skin, and be easily felt/seen.

    I think you should push for an MRI, maybe get a second or third opinion? Did you ever have tumor markers tested?

  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2011

    I should add that the MRI is to check you implants if they are silicone, since any rupture cannot be detected in the way a saline one can.

    If I understand correctly, though, at this stage we are inquiring into the likelihood of mets; not DCIS recurrence (since there are no ducts left?). My understanding is that, at least in the United States, you go by symptoms. Even tumor markers are not reliable in a majority of cases, although unusual numbers could warrant a look-see.

  • Deirdre1
    Deirdre1 Member Posts: 22
    edited February 2011

    Mantra, get the make and manufacturer of your implants on line - pull the pieces that state that every 2 - 3 years the IMPLANTS need to be check for "silent ruptures" - and this can only be accomplished by a breast MRI...  A breast MRI is REQUIRED for implants because of their silicone content, this is how you can insist on having a breast MRI at least every 3 years, not to check for cancer but to check on the implant(s)..  At the same time the radiologist is required to look for cancer - so you will kill two birds with one stone and you doctor can not refuse under this approach (well of course she might but you can go to your board for further review with a solid reasoning).  I do understand than many doc's believe that once the DCIS is removed along with the rest of the breast tissue (mastectomy) that that is LITTLE need for MRI's but for your own fear relief the above will make it unethical of your doctor to NOT order MRI's at least, as it states every 3 years...  Now you are in Ontario, Canada so the rules will be slightly different, but when I was doing my research I ended up with a Canadian Allegan booklet and it states the same for Canada (2-3 years for rupture check)  Good luck and I hope you NEVER have to deal with cancer again...  Best, Deirdre

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2011

    mom3band1g, if I recall, the reason that you had rads after the mastectomy was because of very close margins. I would guess that this too is the reason why your rads onc. has mentioned that your have a higher recurrence risk.  Although rads can cut recurrence risk by about 50%, it doesn't eliminate the risk completely.  So if the assessment was that that your close margins moved your risk from 1% - 2% to around 8%, then even after rads, your risk would still be around 4%.  Of course we have to remember that for all of us, the risk info we get is just our doctors' best guesstimates. 

    JBinOk, your comment about requiring a chest MRI rather than a breast MRI after having a BMX is interesting.  It points out that there likely are differences in what is done depending on whether you've had reconstruction, and possibly even depending on the type of reconstruction you've had. I get an annual breast MRI and because I have had implant reconstruction, the breast MRI is able to check the breast tissue in my reconstructed breast.  But of course I have a "breast" (of sorts) that can go into the breast MRI mold.  It makes sense that if you haven't had reconstruction, a breast MRI, using the breast mold, would be useless but I hadn't thought of that.  

    I had my surgery at the same hospital as Mantra although I had a single mastectomy only. Mantra, like you, I was initially told "no" on the MRI.  I also was told that with implant reconstruction, because the implant is placed behind the chest muscle, if you have a local recurrence either against the skin or against the chest wall, the recurrence is likely to be noticeable quite quickly as a visible lump. With no breast tissue to hide in and with your chest muscle and skin stretched and pressed forward by the implant, that does make some sense. Certainly we've seen that happen to quite a number of women on this board - they get a small visible lump under their skin but over their implant.  So JB, to your question, my understanding is that often the only screening done for those who have implant reconstruction is a manual screening to check for lumps. The implant manufacturers (and I think maybe the NIH or some other "official" group) recommend MRIs every 2-3 years to check for leaks in the implant but the contrast dye isn't necessary and if it's not given, I guess they can't really check for breast cancer.  But you would think that if you're getting the MRI to check for leaks that they would have the sense to give you the contrast dye so that they can check for BC too.

    I'm curious to know if the screening is different for those who have DIEPs and TRAMs and GAPs. With these proceedures, is the breast reconstructed behind the chest muscle or in front of it?  If the breast is in front of the muscle, that could mean that there might be a greater risk that a recurrence against the chest wall might not be found and I would think that additional screening would be required.  I hope that someone with one of these procedures pops in.

    My case is a bit different because I had a single mastectomy. When I went for my first follow-up mammo on my remaining breast, the radiologist at PMH noted that I have "extremely dense breast tissue" and wrote on the report that I should be getting MRIs. So when I went to my doctor there to review the results, that's when the decision changed from "no" to "yes" on MRIs. I now get annual MRIs and annual mammos, alternating every 6 months. The MRI report talks about both the breast tissue and the implants in both my breasts (I had an implant added to my natural breast at the time of my reconstruction).  My last report said "MRI appearance of bilateral silicone implants is unremarkable" and "There is no evidence of suspicious enhancement in either breast".

    I recall reading somewhere that MRIs every couple of years were advised for those who've had mastectomies but I have no idea where I read that.  Certainly from what we've seen among the women on this board, it's not standard practice, at least not yet. JB, do you get an annual chest MRI?

    Edited to Add:  Sorry I repeated some of what was said in the previous few posts. I was interrupted by a phone call in the middle of writing my response and lots of other posts came in. Athena, the discussion initially was about DCIS progressing to mets but mets can develop from a local recurrence that isn't detected quickly enough so I think both topics are in the mix now. 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2011
    JB and Athena, to the comments/questions about a DCIS recurrence, it actually is possible for DCIS (and I would guess LCIS) to recur after a mastectomy. It does seem odd since you would think that all the milk ducts have been removed but I guess some remnants of the milk ducts can be stuck up against the chest wall and few DCIS cells could be left in that ductal tissue.  That might not be how it happens - just guessing here - but I know I've seen women on this board who've had mastectomies for DCIS and who've had local recurrences of DCIS on the mastectomy side.  So it does happen, which just goes to show that you rule anything out! 
  • OnePetie
    OnePetie Member Posts: 9
    edited February 2011

    In response to Beesie's question...... . I had MS2 free Tram reconstruction, unilateral. The recon is over the muscle, exactly as the original breast tissue was. At MD Anderson, I have only annual Mammograms on the non-recon breast. No imaging at all on the recon itself. I had very wide surgical margins with 0.1mm microinvasion.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2011

    Che54, thank you for that information! 

    JB, I agree that the idea of some milk ducts remaining against the chest wall is a bit strange.... okay, maybe more than bit.  It's a theory, maybe a bad one. Undecided  

    How do you define the difference between residual disease and a local recurrence?  To me, they are the same thing... a recurrence happens because there was residual disease, i.e. a few DCIS cells left in the breast after the surgery.  Where I'm struggling is in trying to figure out how these DCIS cells are able to thrive.  From what I've read, DCIS cells that are moved into a different environment are going to die.  Because they haven't evolved to become invasive yet, they don't have the capablity to live and multiply in open breast tissue. So if a few DCIS cells are left after a mastectomy, won't they just die on their own unless they are somehow still encased in the safe protective environment of the milk duct? If they are surrounded by milk duct, then they might continue to grow and multiply and eventually become noticeable as a recurrence. And while the DCIS cells are doing this, they might also continue to evolve and become invasive and then the recurrence would be invasive rather than DCIS.

    It's the "how do the residual DCIS cells continue to grow?" part that I'm lost on, for those who have a recurrence after a mastectomy. If it's not in milk duct tissue, then how?  I am pretty comfortable with the part about DCIS cells not having the capability of thriving in open breast tissue.  If you think about all the women who have excisional biopsies for DCIS and all the milk ducts that are cut open, you would think that every one of those women would have some invasive cancer (because the DCIS cells were able to slip out of the ducts) by the time they have their next surgery.  But most don't.  I had two areas of high grade DCIS with comedonecrosis and I don't know that I had a single clear margin after my excisional biopsy. I also had a microinvasion that was found during the excisional biopsy, so it was clear that my DCIS was already starting to evolve. I didn't have my mastectomy until 2 1/2 months later and yet all that was found was more DCIS - so none of those loose DCIS cells took hold and started to develop in my breast tissue as IDC.  I've seen the same thing happen with other women on this board.

    So how do DCIS recurrences happen after a mastectomy?  Any other theories?  Any ideas based on what your doctors have said?

    Mantra, here is an excerpt from the Canadian Allergan 410 brochure, which I'm afraid is not likely to help you much in your quest to get approval for an MRI:

    Screening For Silent Rupture
    Because most ruptures of silicone gel-filled breast implants are silent, in most cases neither you nor your surgeon will be able to find evidence of rupture. Therefore, evaluation of your implants is needed to screen for implant rupture. It is recommended that you take a a multi-step approach to monitor the integrity of the implant throughout the lifetime of the device beginning with a patient self examination. Obtain an ultrasound or mammogram if a new symptom or sign is suspected or as part of a periodic review with a physician. If the ultrasound is negative or inconclusive obtain an MRI. If MRI results suggest a rupture discuss explantation of the implant with your plastic surgeon.   http://www.allergan.ca/assets/pdf/M1247-01_Can_RECON_410_PatLab.pdf

       

  • Shrek4
    Shrek4 Member Posts: 519
    edited February 2011

    Beesie,

    I know that my BS said that they can never take out ALL the breast tissue, and some cells can be left. So, yes, I think DCIS can appear as a primary in those cells. This is why before they were performing radical mastectomies, not modified radical mastectomies, so they could be sure they took out all breast tissue - and even in those cases, sometimes recurrence would still appear.

    The flap and recurrence in the chest wall is a very interesting question too. I will ask my PS Tuesday (I'm scheduled for a revision of Wednesday) if my implant is behind the chest muscle, but I honestly don't think it is, I think it's only covered by the pectoral muscle and the LD muscle. I am not sure if my BS took out the chest muscle on the right side or not. I know I had a "total" on the left (non-involved breast) and a "modified radical"on the right, but I dont' really know how "radical" it was. The pathology only talks of breast tissue, so I'd think he didnt' take out the chest muscle.

  • Dejaboo
    Dejaboo Member Posts: 761
    edited February 2011

    Im glad you started a New Thread here Bessie.

     Ill Pop in .

    I had an SGAP & Like A DIEP or TRAM the Reconstruction is placed over the Muscle. 

    Some Women are told to have Mammos after their Flap surgery...others MRI & still others are told nothing but A breast exam is necessary.

    At this point I plan on only doing breast Exams.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2011

    JB, what you describe as being a "recurrence" is what I've always thought to be a "new primary" whereas my understanding was that a recurrence was caused by residual disease.  The following fits to how I've used these terms:

    Second Breast Cancer: Local Recurrence or New Primary?

    Differentiation between a recurrence or a new primary is dependent on the involved breast (ipsilateral vs contralateral), and for ipsilateral lesions depends on the disease-free interval, the location of the lesion relative to the original primary, and the histologic and biological features of the tumor.

    Most contralateral lesions represent a second primary tumor. Metastasis to the contralateral breast can occur, however, and is often associated with other distant metastases or regional cutaneous, lymphocutaneous, or nodal metastases.

    However, most ipsilateral tumors represent recurrences rather than second primaries. In general, ipsilateral recurrences occurring in patients who have had lumpectomy are associated with a more favorable prognosis than local-regional recurrence after mastectomy.

    Features associated with a greater likelihood of being a second primary tumor include a long disease-free interval (> 5 years), recurrence in a different segment of the breast from the original primary, and differing clinical or biological characteristics. A careful review of the histologic features with a pathologist is an important component of the evaluation. Other biological features (eg, estrogen/progesterone receptor evaluation, HER2/neu overexpression) may also be useful -- concordance suggests a recurrence, whereas discordance suggests a second primary.

    How do others here define these terms? 

  • Estel
    Estel Member Posts: 2,780
    edited February 2011

    Beesie - I have nothing to add except a thank you for this discussion and all your research.  It's really helped me and I appreciate it. 

  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2011

    FYI, in case any of you are interested, Dejaboo just started a related topic on the Stage I-II forum called "How many no longer see their oncos."

    I am referring, specifically to the topic of post-treatment monitoring. I wanted to say something here because I was surprised at the discussion about MRIs, but realized I was surprised for a reason that speaks to my stage and not to DCIS.

    However, head on over if you are interested, and PLEASE POST. I hate the stage segregation we have on BCO.

    I just posted on that thread, and you will see why I did not do so here if you read it. I think it's fascinating, in a way, that when you have DCIS, the worry is arguably worse than for stage I/II since you sisters have so much more to lose - you have much further that you could go.