Please help me, ladies

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percy4
percy4 Member Posts: 477

I, as you know, had a lumpectomy two weeks ago.  4 mm of not high-grade DCIS, no necrosis.  And, yet, in this they found a micro.  I will be doing rads.  It was already the smaller breast, is marginally smaller again now, and I am scared that rads will shrink it more.  Experiences?  Does it change back?  This possible shrinkage over even years upsets me.  I do care more about my health, but I care about this, too.  Also, as a former light smoker, I am upset about the tripling of my lung cancer chances.  Still; I need to treat this cancer, at this time.  Still going to send my path to Dr. Lagios, not about rads (that's decided) but I need to know how my micro is a real micro, biologically different, and not just displaced DCIS cells.  I realize it probably is a real micro, but three path reports from my HMO do not explain this, and MO just says "its outside the duct".  This was supposed to have possibly happened even in my biopsy sample, so maybe it's happened again.  Do realize it's probably a real micro, but need to understand WHY, biologically.  I wish someone would just tell me.  This test means this, and this test means that.  I've been paying, while unemployed, over $600 a month; you would think they'd give me an entirely complete report, in that I've asked for it.  So I have to pay a lot of money to have all explained to me.  No matter what I ask for (like ALL the margins sizes) I am just not given it. Tired of asking so I will borrow the money to have a sit-down, real explanation.  Have now seen a couple of small IDC people with no nodes taken, but they admit it is a 5-10% chance (guess they think that's good enough).  They are still not recommending the SNB; I will have to fight for it.  And how do they even do it, now, so much later?  I thought they put dye near the tumor at op time, to see where it goes.  How do they find the node now, later?  Must they now take more nodes?  Am upset.  Just trying to get this done, and right, so I can get back into the job market, which I desperately need to do.  But not before doing this correctly.  Am very down, today.

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  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Not to mention, I have my liver ultrasound tomorrow.  Remember, they incidentally saw, on my breast MRI, two large masses in my liver?  Supposed (thankfully) to be hemangioma (blood vessels). Not harmful in themselves, but the very size of them could mean a liver biopsy, or even a liver re-section, a whole abdominal surgery.  They don't have any reason to feel it is connected to the breast disease, but, really, I just can't take anymore.  Am trying to be positive for my kids and parents, and get that I am lucky, but I only have money to live through Feb., and this looks like going on a lot longer, even if it goes well.  May have to consider bankruptcy, after working like a dog my whole life, raising two kids alone and with no welfare, and then no one will rent to me, and it will all be over at this late stage in life (they don't offer new credit to old people who do not then go back into a well-paying profession).  And I can't stand it, Beesie and ballet; I just can't stand it.  Really.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    You know what, actually? I feel like going on my merry way.  I do think it's out of me, so I feel like not doing rads, not doing drugs, not doing the liver ultrasound, not doing the SNB, and just hitch-hiking through Europe.  Of course I will not do this; but I so feel like doing it. xx.

  • Annette47
    Annette47 Member Posts: 957
    edited December 2013

    I don't know anything about liver issues, but as for the rads.   My left breast was the bad one, and it had always been a bit bigger than the other one, so when they told me about the cancer and that I would need treatment I was a little relieved as I thought finally, a chance for symmetry.    Nope,   After having a large chunk taken out of it and rads to it has been even bigger then ever for almost a year now.     So no guarantees, but I wouldn't automatically expect to see shrinkage.

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Thanks, Annette.  And, sorry you did not get the symmetry you were hoping for.  Just feeling a little poked and prodded, here, having to have a SNB over a month after lumpectomy, and then recover from that for 6 weeks before starting rads.  Really, though, it's the liver that's bothering me today.  Even though I only had a micro, and even though they do not suspect anything solid, they've only seen the tip so far, not the whole thing, and there's no way to not worry once you've had an invasive cancer in you for any amount of time (I don't know how long it was there), especially as the nodes haven't been checked.  Am not up for more surprises.  Remember, my original, supposedly final, lump path report said all clear for anything invasive, then surgeon called me several days later to tell me it had been amended to include a micro. Taking one step at a a time.  Unhappily.

  • pupmom
    pupmom Member Posts: 5,068
    edited December 2013

    Percy, sounds like you've had it "up to here," and I can understand why. I also had a liver hemangioma, which they didn't biopsy. They just looked at it a couple of times again with CT scans. Nothing changed, so it was determined to be a totally benign growth. I also had a couple of spots in my lungs, which were also determined to be nothing. So, if you can get another CT in 3 or 4 months, that might end it all. You DO have a good prognosis, so try not to despair!

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi Percy, Happy New Year (I hope!)

    I wish I could help with those big real life things like unemployment and money.  It's tough enough to go through what you are going through when those issues aren't also pressing.  I also wish that Kaiser was more helpful to you.  I think it's great that you are consulting with Dr. Lagios. I have read that his consultations with you by phone are really thorough, and I'm sure he will answer all that he can, from whatever he gleans from the pathology (including size of the lesion, margins, etc.) It's probably a real microinvasion, so rads is important.

    As I have said, I had major cosmetic changes to the breast from all of the surgeries (including three prior to the three lumpectomies).  The radiation actually IMPROVED the breast.  It did not get any smaller.  It filled out a little bit over time.  The skin is baby soft (you actually lose the tiny hairs on the breast that you can't even see). Just do it!  It'll be OK.  We'll be here holding your hand (as well as those on the rads threads, if you care to join them).

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2013

    Just an FYI on the SNB - as long as you have a breast they can do the SNB - the injections are around the nipple - not the site of the tumor - and they will lead away from the breast toward the closest node(s) which is then identified as the sentinel.  If you had a mastectomy then the SNB could not be done, but since you had a lumpectomy the breast tissue remains, so the SNB can be done.  As far as an explanation of what is seen on your slides - can you ask for a pathology consult?  Many pathologists will do this as part of the service rendered of classifying the biopsy/lumpectomy samples.  It should be included in those costs, so maybe no more out-of-pocket for a better understanding?  depending on how you react to rads you may have no retraction or shrinkage of the breast - have you had a rads consult yet?  You might inquire about doing a Canadian protocol - it is a shorter (3 weeks) duration of rads, and may help with the potential of damage to the breast.  It is worth asking about.

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

    Percy, when you say "Do realize it's probably a real micro, but need to understand WHY, biologically" are you looking for the answer as to which immunostaining tests were done to confirm that this is an area of invasive cancer and not just displaced DCIS cells, or are you looking for the reason why you would develop a microinvasion when you had such a small area of non-aggressive DCIS?

    To be honest, I don't think you will ever get the answer to the second question because this is something that just isn't understood yet within medical science.  I talked to this a bit in one of my earlier posts in one of your other threads:

    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.

    As for the first question, that is something that Dr. Lagios hopefully can answer for you.  There are specific immunostains that are done to try to determine if cells are microinvasive or DCIS.  Here is some of the information on this that I provided in my previous posts:

    .

    Have you seen these diagrams from the breastcancer.org site? You can
    see how a microinvasion just breaks through the cell wall. So what they are looking for is both the cells on the outside of the duct, and the breaks or gaps in the duct wall - and that I believe is what some of the immunostaining aims to find.  http://www.breastcancer.org/pictures/types/dcis/dcis_range

    Range of Ductal Carcinoma in situ

    As for the SNB, here is a copy of part of the explanation of the SNB procedure that I provided previously: 

    • 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.

    .

    Although many of the articles about SNBs say that the injections are done at the tumor site, that's not actually necessary and that's why SNBs can easily be done after a lumpectomy surgery has already removed the tumor. I had four injections done around my nipple; this is how it's commonly done.  I then lay for about 15 minutes with my arm raised under a scanner (I believe it's called a gamma scanner; the process is called lymphoscintigraphy) and I was able to watch on a computer screen as the four injections each started off heading in different directions in my breast and then each turned and began to snake their way toward my underarm nodes.  Before reaching the nodes, all 4 injection streams joined together.  So I knew before I went into surgery that I clearly had one or more sentinel nodes.  Sometimes those injections don't all join up and it means that there is no clear sentinel node; in those cases more nodes need to be removed. My surgeon had warned me about that, but it only happens in only a small percent of cases.  Most SNBs are successful in highlighting the sentinel node(s), usually anywhere for 1 to 4 nodes (but sometimes even 6 or 7). 

    As for your liver situation, hopefully the ultrasound is all that is necessary and no biopsy is necessary. That's the problem with MRIs or any general scanning (CTs, PETs, etc.) - they tend to find all sorts of things that you might prefer not be found.  My last breast MRI found spots on my spine - spots that had the appearance of spinal mets.  The few weeks that it took to get that cleared up were not fun at all but fortunately I didn't need any more testing or biopsies - just a more expert analysis of my imaging by my oncologist and a radiologist who specializes in spinal mets. 

    Lastly, you have a lot of threads going and it's
    getting hard to keep track of where we discussed what; I had to do a lot of digging to find the info that I'd previous provided and wanted to refer to here.  So as a suggestion, it
    might be easier going forward to stick with one or two primary threads
    so that we can continue the discussions with references back to earlier
    posts in the same thread.

    Good luck with the liver ultrasound!!

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Thanks, Beesie.  Will keep the threads to a lower number.  I hadn't thought of that, but I can see how that could be difficult.  Yes; I am looking to understand which staining test(s) showed conclusively that I had invasive cancer cells, not just DCIS cells outside the duct.  I'm sure it's there, but no one can explain it to me, certainly not the MO.  They just keep referring to where it was, not what it was.  Lovely path assistant on the phone at Kaiser this morning told me when I could call on Thursday and speak to the pathologist directly, so may then get a real answer.  All of this to understand why I am not being recommended for a node biopsy if the cells were proved to be invasive cancer.  And, so, to know if I have to insist on the SNB.

  • bdavis
    bdavis Member Posts: 6,201
    edited December 2013

    Love the graphic

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi Percy, I can't comment on the SNB because I didn't have one, but I will endorse Special K's comment on the Canadian protocol.  I did that protocol, which is the primary protocol used at Memorial Sloan Kettering for early stage bc (DCIS, Stage 1 and Stage 2a, not sure about 2b).  Anyway, it is 3 weeks, but really amounts to 16 sessions plus marking and set-up days.  If you need boosts, those are additional.  They might do boosts because you had the narrow margin.  MSK no longer does the 25 or longer day treatments for those with early stage disease. 

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Liver ultrasound was inconclusive.  For what, I don't know, as breast MRI (a better imaging tool) said the lesions were not solid.  They now want me to do a liver CT scan!  Really scared now.  Had been told liver issue was not connected to breast disease, am now wondering.  Know it's almost impossible that a micro could have gone to the liver and formed two large lesions so fast, especially as micro is HER2, not aggresive, but can't help being nervous.  Breast surgeon says she's interested to see what Dr. Lagios thinks about a SNB, to do with margins and because the invasive component was so tiny.  Thought they had definitely recommended no SNB (know they did) and now wonder if they are re-visiting that because of the liver issue, though she did't say that.  Better not be a surprise that there was a dirty margin (tired of surprises); presume when she says "to do with the margins" it's to know all the margin sizes, not because they think one might be narrower than the 2 mm.  That can't be; it said in several places 2 mm was the narrowest.  She also said the SF path report is pending, she's been watching for it, though MO last week sent what I thought WAS that report, maybe it wasn't final.  Am really getting scared here, and can't get back to life (have to; no money) till this is all done.  Prayers, please!

  • percy4
    percy4 Member Posts: 477
    edited December 2013
  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013

    Well 'Crap!' to the liver ultrasound results.  I can appreciate why you are getting scared... I've been there (except that it was my spine not my liver)!  The one thing I can tell you from all my years on this board is that lots of non-significant garbage in the liver shows up on MRIs so hopefully that's what it is in your case.

    When I was going through the possible spine mets thing, I was pretty scared for about the first 48 hours and at that point, I talked myself down.  I reminded myself that with a microinvasion, I had at most a 1% chance of developing mets - so yes, it was possible but highly unlikely.  And whatever it was, it was.  Worrying wasn't going to change it.  So why drive myself nuts over something that had a 1% chance of happening and that I couldn't do anything about anyway?  Once I gave myself that little talking to, I was fine.  Of course it remained in the back of my mind the whole time until it was resolved, but I really did stop worrying and I become quite calm about it. 

    Interesting that your surgeon is interested in Dr. Lagios' opinion.
    That's good because it means she'll be receptive to whatever he says.
    That's often not the case with the primary surgeon.

    Good luck with the CT scan!  Did you get any idea of how quickly it will be scheduled?

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    No idea about when.  Breast surgeon has forwarded ultasound result and CT recommendation to my primary, but I haven't heard from him.  Perhaps he wants a liver doc to look things over.  Asked surgeon if new SNB thoughts had to do with the liver; she said no, just about the micro, and is still against the SNB as she feels nodal involvement chances in my case are tiny.  She does say she will defer to the recommendations of others (new MO, Dr. Lagios, and my RO, the one I told you was the most surprised about the no SNB) though; she just doesn't want me to risk lymphedema if the chance is so small.  So, ultimately, I guess the SNB is up to me.  So, now, of course, I'm wondering if I have two completely unrelated issues; the breast and the liver.  Even if the liver is not, as it shouldn't be, mets, obviously they are worried about something, and, really, I've just had it! 

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi Percy,  Sorry you have to go for the liver CT.  I hope that can be scheduled soon, so that you can get resolution on it.  I like Beesie's reasoning, that there is only 1 percent change of metastasis from bc with the microinvasion.  At the same time, it would be impossible to get it out of one's mind until the issue is resolved.  I am very happy to hear that the surgeon will be open to Dr. Lagios's views on the snb.  So, now, you have to be ready to decide what you would do with the information if Lagios says "yes" to snb or "no" to snb.  That's the really hard part. I gather that you've been leaning toward doing it, because it's the "standard of care" for microinvasion, and you'd worry, forever, if you didn't do it.  I hope you can get these things out of the way, move on to radiation, and return to some semblance of normal life. 

  • percy4
    percy4 Member Posts: 477
    edited January 2014

    Finally spoke directly to the original pathologist who sent the lump sample on to the immunohistologic Kaiser center in SF to make sure that the micro she suspected really was a micro.  She was able to explain to me the staining tests (Calponin and P63- negative, CAM5.2- positive), which show the myoepithical(?) layer around the cells in the micro is absent, and in displaced DCIS cells, that layer would still be intact (which I have read about).  Two or three people concurred, and now I understand not only about WHERE the cells were (outside the duct) but WHAT they were.  While I would have liked this to be not so, I do believe it is a real micro, and now understand why.  She was very clear and certain, and, in fact, apologized for having to amend the original report.  Apparently, my surgeon was eager to give me a result, and this pathologist felt a little pushed to provide one, while she still had a concern about one slide.  It really bothered her that she involved herself in doing it this way, and apparently feels she's learned a big lesson, to not be hurried.  She felt awful.  I thought that was good of her, to not let that go by without saying something, in that I hadn't asked her about that happening.  I did tell her, then, that the rushed result and then the amendment had upset me, and that I really appreciated her apology.  I am doing rads no matter what because of the 2 mm margin.  While the surgeon is interested in Dr. Lagios' opinion about margins/SNB, I am wondering the value of spending $650 for his advice at this point.  There is a micro, there is a single-digit chance of nodal involvement in my case.  It seems to me I can skip Dr. L at this point, even though he's probably great, because at the end of the day, those are the facts and the decision is mine to make.  What could he tell me against the SNB, other than to say it's a very, very small chance, which I already know?  What would you do now, ladies?  It is possible I could pay a smaller amont for a phone conversation with him, explaining the pathology (or faxing him the reports) and asking his advice and reasoning about the SNB, though I don't know if he does that, or just the whole thing, re-doing path and all.  Ideas?

  • percy4
    percy4 Member Posts: 477
    edited January 2014

    Oh, I forgot; there is still another reason to do everything with Dr.Lagios.  He has definite ideas about hormone therapy, and probably even more if it's only a micro.  I should probably go through his process, anyway.

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