Micro-invasion and future possibilities

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  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Merry Christmas, all.  And if that's not for you, a blessed and wonderful New Year.  Love - P.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    I am definitely going to write a piece about this.  I am David Sedaris type.  Not AS neurotic, therefore not as funny, but I AM funny.  I will call this piece "Results".  Seriously.  LOL. xx

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    I can afford to laugh.  While I would like the micro to be discounted, even if it's there, I'm OK.  Even when I get the nodes done, no real reason I still would not have a very treatable cancer.  Do not suppose they could have looked at all this, and missed a serious stage cancer.  That would be insane.  So, I am laughing.  I am going to live through this, it's just a matter of what crap I have to go through before the end of it.  I'm lucky.  Happy Birthday to me.  Really. xx

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013

    Well, you've certainly put your own spin on the expression "When life gives you lemons, make lemonade!".

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Oh, my goodness!  Thank you SO much, girlfriend!

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    As I said.  I'm going to live to be an old woman.  I always knew that.  And, as I said , I always thought it would be an old woman with two breasts.  Likely, still.  But if more happens later, and I don't have two breasts, all I have to say is I'm a gardenia girl.  Whether reconstructions or not, if that does happen, I will have a beautiful gardenia tattoo.  I may do it , even now.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    So funny. I wanted my kids to stay "pure", not get into tats.  So; I kept my Michael from a tattoo till he was 30.  He then got a musical note (really nice) on his hand.  I asked him why, with all of his body to work with, he put it in the one place you could not hide for a job, or something.  He said  "I'm not living a fear-based life like you, Mom".  An insult at the time, but now I get it.

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Happy Birthday and Merry Christmas to you, Percy!  You deserve to have a wonderful day!

    That phone call stuff happens to all of us.  You are guaranteed to get a return call the minute you leave the phone to do something or turn it off.  This has gotta be a truism.  I hope you can reach someone today (it's already 12/24 here on the East coast).

  • wyo
    wyo Member Posts: 541
    edited December 2013

    percy- aren't you a KP member? I thought you said so but don't want to get you confused with someone else. If not this won't work for you- 

     If so; all your information is in your record and even your PCP has access to it. Call your MO office in the am- if they are closed call your PCP office. email your regular MO and tell her you need a call with your results and someone on your team or covering doc needs to give you your results.  

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    I love you all.  Here, it's my birthday in 2 hours.  I always spent the final countdown minutes ruminating about the last year, and looking toward the next.  I always did that with Felix.  He is my cat, now prematurly deceased .  I don't even love animals that much, but he was mine.  He could have come as a cat, or anything else.  I cried with abandon for him, today, though he's been gone 2 years, but my birthday reminds me of him.  I would give both of my breasts, no hesitation, if I could have him back for a week.  And I'm not nuts.  He was perfect.  I was lucky.

  • Annette47
    Annette47 Member Posts: 957
    edited December 2013

    Just wanted to wish you a happy birthday - hope you get those results today!

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    OK; ladies, mixed good news.  SF path concurs about the micro (at least didn't think it was a smidge bigger).  The good news is it is ER+, so I can take the Arimidex.  It is HER2-!  Also, it it grade 1!  So, at least a little happy.  This on-call MO was MUCH more communicative, so I'll be going with her from now on.  Because of the lowest grade, and the HER2-, she also does not feel SNB is necessary.  Admits it's just possible to have node involvement, but with my particular diagnosis, including that the DCIS is non-necrotic, says the chance is not 10%, but 5%, if that.  Still; she'll do it if I want.  By the way, she's seen several cases of a micro within a small, low-grade DCIS.  I believe her about that.  Do you all still think I should still do the SNB?  Rather; what would you do, now?  She feels the risk of lymphedema with a SNB is not 10%, but less than that.  Other MO said she had no idea; told me to ask the surgeon.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Also, concerning Dr. Lagios.  I was going to go on to him after this path report.  Does anyone think that's still valuable?  In that I have decided to do rads, no matter what he thinks about that, because of the 2mm margins on at least 1-2 sides of the DCIS.  Only thing would be if did not concur about the micro, to do with whether to do the SNB.  Still; three facilities within my HMO have seen this now.  First one wasn't sure, sent it on to Oakland, where they found micro.  Sent it on to SF then, where they found micro.  Know the HER2 status could have been done even if it was DCIS, but how could they have given the micro a grade 1 for cancer, if it wasn't really invasive cancer?  Could they?

  • TB90
    TB90 Member Posts: 992
    edited December 2013

    Hi Percy:  Micro-invasion is invasive cancer, but at the earliest possible stage.  Hardly will even affect your treatment or outcome, but once the cells leave the in situ stage (DCIS) they are invasive.  You still have a very very early cancer and your outlook will be excellent. 

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    I'm sorry; one more thing (Beesie?).  What is a CAM5.2 test in the path?  Whatever it is, mine is positive.  Meaning?

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Today is my birthday.   And, while I would like to have never been here, I feel like the luckiest girl in the World. I have a great prognosis, SNB not withstanding.  I have looked at the other topics.  Stage 3 or 4 with little chidren.  My God; I don't know how they do it.  I would like to travel, re-marry, have experiences I didn't have because I was a Mother at 18, etc.  But the thing I  wanted to do, which was to be a Mother, is done.  I made mistakes, of course, but have two beautiful, good, kind children.  While I worry about their progression in life, with things as they are today, I do feel I have raisied them to fruition.  They are not 20, they could (not happily ) live without me.  I did my job, and everything else is gravy.  Know my prognosis is great, and none of this will probably happen.  May sound silly, but today, on my birthday, I feel indredibly lucky.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013

    Happy Birthday & Merry Christmas Percy.

    My best friend since 5th grade has her birthday today & she just started her chemo for BC a few weeks ago.

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi Percy, glad to hear you were so hopeful and grateful on your birthday, and that the news from the path report was not any worse.

    At least, you now have confirmation from three different places about the microinvasion.  You may not need Dr. Lagios, unless you want further input on the SNB question, which is a tough one. I wish I could help you on that one. 

    I hope you continue to enjoy your holidays.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Thanks, all , for the Bday wishes.  Yes, the concern now is whether to go on to Dr. Lagios.  Am doing the rads, no matter what, because of the small margins around this DCIS.  If he does not agree about the micro, I will still wonder, as 2 facilities have now concurred about that.  Still feel path report incomplete, as even the 2nd opinion SF report does not give me the mms of all my margins, just the narrowest two.  Since I'm doing rads, guess it doesn't matter, but would like to know.  Also, still confused as they are telling me it's a micro because it's outside the duct (back to wondering if there are displaced DCIS cells) and not that the micro is biologically different.  Is that the CAM5.2 test, does that say biologically invasive cancer?  Note the micro was called "well-differentiated" and it was referred onto Regional Immunochemistry  in SF.  Is that the place/area where they would see the cells were invasive cancer, and not DCIS?  Obviously, and I was told, it is stage 1(A?) cancer. Histologic type: micro-invasive ductal cacinoma (the micro) was given a histologic grade 1 by doing being looked at with things called Nottingham; Nuclei 1, Architecture 1, Mitrosis 1 = total of 3.  It also refers to a  breast triple stain, Calponin and P63-negative, positive intenal control.  What are these, if anyone knows, and  could these things only be done on invasive cancer? This is all about the SNB.  I do believe my chances of nodal involvemant are 5%, because of my own diagnosis.  If I do the SNB, not only will (I heard) it be really painful and limiting for a while, compared to the lumpectomy, but it will make this whole thing (presuming they are negative and I don't have to do chemo) last at least 6 more weeks, as that's needed after the SNB before radiation.  It is also another surgery.  The factor about the extra time is that evey month I can't work, I'm going $3000 more into debt.  But, logically, you have to take away the pain factor and the money factor, because we are talking about my life.  I know it's only 5%, but I also know that getting it right the first time is incredibly important.  Recurrences are not so good.  One question besides your opinions on that.  I've looked at the various "signatures" here, and see some women with a micro, or inavasive cancer, have as few as 1 node taken, and some have 3, or more.  How many sentinal nodes are there, and how do they choose to do one rather than 3, for instance?  Surgeons choice, or do they use a dye to see the "hot" nodes?  If they do, and no nodes light up, might they skip it, would that mean there's nothing there?   Beesie, Love, think I need you here on this one.  Thanks and love - P. 

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    One of the best things about this place is I can drive you nuts, a little, and not use up my driving the docs nuts limit.  LOL. xx

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Did I mention that when my daughter took her retreat at the time of my surgery, she was so worried and guilt-ridden that she snuck into the main office and used their phone there, in whispers (you're not supposed to talk, on the retreat) to check on me after surgery.  Children.  Seriously.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013

    Percy, 

    CAM5.2 is a new one for me.

    This article suggests that the Calponin and P63 can be used to try to distinguish between invasive and non-invasive cells:  Immunohistochemical distinction of invasive from noninvasive breast lesions: a comparative study of p63 versus calponin and smooth muscle myosin heavy chain

    This might be helpful too: Molecular markers for the diagnosis and management of ductal carcinoma in situ    I don't have time right now to try to locate the full article, but it might be helpful in explaining the difference between the stains.  Same thing with this one, although it's a much older article: Detection of stromal invasion in breast cancer: the myoepithelial markers

    As for the number of nodes removed during an SNB, it all depends on how many nodes "light up".  The way an SNB works is that injections are made into the breast prior to the surgery. The
    injections are either blue dye or radioactive isotopes or both. Several
    injections are made, and they are aimed in different directions. The
    dye/isotopes then travel through the breast and move to the lymph nodes
    under the arm. The nodes that "light up" with the dye and/or isotopes
    are the sentinel nodes. It's not that the dye/isotopes light up nodes
    that have cancer. They just light up which ever nodes they enter into.


    What is not well understood is that sometimes with an SNB, one node
    is removed, but often it's 2 or 3 and it could even be up to 6 or 7.
    When a sentinel node biopsy is properly done, the surgeon should remove
    all of the nodes that 'light up' from the dye or isotope injections.
    If only one node lights up, then only one node needs to be removed. But
    if 6 nodes light up, then all 6 nodes need to be removed. If the
    dye/isotopes were able to travel so quickly from the injection site in
    the breast into 6 nodes, then logically if cancer cells were to travel
    from the breast to the nodes, the cancer cells could just as easily
    move into any one of those 6 nodes (or all 6). So when 6 nodes light
    up, the surgeon can't just pick one to remove. Because of the way that
    the nodes are bunched, there is no way to know which node was the
    first one that the dye (and cancer cells) would have entered. All 6
    nodes must be removed.


    So basically the theory of an SNB is that the injected dye/isotopes
    will follow the same pathways within the breast to the nodes that cancer
    cells would have followed. Therefore whichever nodes are entered into
    and lit up by the dye/isotopes injections are the nodes that would be
    the most likely to have cancer cells, if any cancer had moved from the
    breast to the nodes.

    Lastly, with regards to Dr. Lagios.  Would it possible to send him an email highlighting your issues/questions (particularly about the SNB in relation to the presence of the microinvasion) and ask if that is something that he would be able to address or whether he sticks to issues specific to DCIS and rads?  There's no point in spending money on his opinion if he doesn't address things like an assessment of the microinvasion and the risk associated with it and therefore the need (or lack of need) for an SNB. But if he does address those things, his opinion could be the very valuable to your decision and peace of mind.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Thanks so much again, Beesie.  One thing I'm still not clear on, though I should be by now.  If the micro turns out to be DCIS cells biologically, but they were displaced into the breast tissue, would they be able to go to the nodes (or anywhere else) as cancer since they were cancer cells that were outside the duct, or is that only possible if they are actually biologically IDC cells?

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013

    My understanding is that DCIS cells that are misplaced will not be able to survive for long.  So no, they won't have the ability to travel to the nodes.

  • leenso52
    leenso52 Member Posts: 31
    edited December 2014

    Hi everyone.  I'm new to this site and am reading so much my head is spinning!  I had surgery for 2-3 areas of suspected DCIS (actually one had been confirmed in November as DCIS, high grade) and as far as my surgeon told me the diagnosis is the same.  DCIS, high grade, ER+.  I've been noticing with great interest the surgical histories of many of you who have same diagnosis but have had repeated lumpectomies in  fairly quick succession from the first one?   My surgeon told me last night from the final path report I should not need further surgery.  Does he mean only "at this time?"  

  • Annette47
    Annette47 Member Posts: 957
    edited December 2014

    Usually people who have repeated lumpectomies in a short time frame do so because the doctors were unable to get clear margins the first time, so go back to widen the margins. If your initial lumpectomy achieved clear margins then you should not need further surgery.

    Hope that helps!

  • leenso52
    leenso52 Member Posts: 31
    edited December 2014

    Thank you, Annette 47!  That certainly makes sense!  And definitely helps!  I'm pretty sure there is a mechanism built in to the surgical procedure, at least in my hospital, (I am an oncology nurse myself, but first time traveler on this very personal journey) where a pathologist is present in the surgical suite who puts a stain along the edges of the breast tissue excised.  It can then be determined if margins are clear.  If not, the surgeon cuts again now, to avoid re-excision at a later date.

  • ballet12
    ballet12 Member Posts: 981
    edited December 2014

    Hi Leenso, I would have so welcomed the procedure in your hospital, whereby a pathologist immediately stains margins, and presumably examines them under a microscope.  I had the two re-excisions because the margins weren't clean (none were, actually) after the first surgery.  That surgeon didn't even have margins marked or "inked", so when I went for a second opinion and ultimately the two re-excisions at the other hospital, the second surgeon had to go by "feel", resulting in, not one, but two re-excisions in a three week period.  I also asked for wide margins for the third surgery, which I now understand, based on current research, to be unnecessary, but were previous valued as a way to reduce recurrence risk. Best wishes on your recovery and follow-up treatment.

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