confused about SNB and recon

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brca1babe
brca1babe Member Posts: 75
confused about SNB and recon

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  • brca1babe
    brca1babe Member Posts: 75
    edited March 2011

    I have 3.2 cm DCIS by stereotatic bx with "possible microinvasion" and am BRCA1.  There are two <7mm areas that light up on MRI and not mammogram that have not been biopsied and could be something or nothing.  I plan a BMx with immed recon given that I am BRCA1 and a PBM has been an option for me anyway.

    Here is where I am confused.  B/c of the possible microinvasion the breast surgeon plans a sentinel node biopsy.  The PS who will be doing DIEP wants to know if he should abandon surgery at any point depending on what the BS finds.  For example, if he finds a node + or two, or three... but I thought I wouldn't need radiation if  I get a BMx for DCIS?

    If the node is positive, can I still get immediate reconstruction?

    I hope to talk to my team more next week... it now seems more complicated than I thought.

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2011

    Unfortunately there's a lot about breast cancer and breast cancer treatment that is compicated!

    It is standard practice to have an SNB with a mastectomy for DCIS, if the DCIS is high grade and/or has comedonecrosis, or if there is the possibility of microinvasion.  The reason is because it's very difficult to do an SNB after a mastectomy has been done (normally for an SNB injections are made into the breast before the surgery and with no breast after a mastectomy.....). So should any invasive cancer be found during your surgery, then it would be necessary to check your nodes and more nodes would need to be removed if an SNB can't be done.

    As for radiation, there are cases where radiation is required after a mastectomy, even if the final diagnosis is pure DCIS.  If you have very small margins, radiation might be recommended - this seems to be becoming more common, thanks to a couple of studies that have shown that the recurrence rate after a mastectomy for DCIS is higher when the margins are very close.  If some invasive cancer is found, this opens up two other possibilities where radiation might be recommended.  First is if the amount of invasive cancer is large.  Second is if you have positive nodes, and particularly, more than 2 or 3 positive nodes.

    Certainly going into a mastectomy with a preliminary diagnosis of DCIS, it's not likely that you will require radiation. But as others here have found out, it is still possible that radiation might be recommended.

    As for whether you can have the DIEP if you have a positive node, I would think that might depend on how many nodes are positive and what treatment is recommended as a result. You might want to ask this question in the recontsruction forum - most of the women who hang out in the DCIS forum would not have had positive nodes because their diagnosis was DCIS.

    I hope that you are able to talk to your doctors next week. The info you get here in response to your post will hopefully help you come up with your list of questions. 

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2011

    You can have reconstruction even if you have radiation. The only issue I can think of would be if you have an implant and you need radiation of the breast not the axilla.

    As Beesie said, usually pure DCIS with mastectomy doesn't require radiation, but there are so many unknowns until the surgery is actually done.

    Are you wanting to have DIEP because you don't want implants? because if you have nothing against implants, there is no need to have a flap. Flaps usually are done to replace radiated skin, and they are a way more invasive surgery with a longer recovery. Otherwise it's the regular TE and then exchange. I see you're doing a PBM, so did you think about skin-sparing BMX+TE and then exchange? If your tumor is not too close to the skin you can do that.

  • brca1babe
    brca1babe Member Posts: 75
    edited March 2011

    thanks for your replies!  I decided on no implants, though the flap surgery is more to go through up front, I like the idea of using my own tissue/fat.

    When I got the bx results and talked about BM, noone mentioned that at the time of surgery I might find out that it's not DCIS, so I am trying to adjust to that.

    What is the chance that it has spread to the node?  (it is high grade with comedonecrosis)

    What is the change that it is invasive?  (I assume it can be invasive but not yet in the node?)

     I think I can have immediate reconstruction, but it seems the gamble is that if radiation ends up being recommended, I can't do it with a fresh flap reconstruction, I have to let it heal 8 weeks or so prior to radiation.  I think that is what the BS was trying to explain to me.  I could get reconstruction and then it only delay radiation and get messed up with radiation.  I think.

     I dumbly thought that the diagnosis was DCIS and hadn't even considered that it could be worse after the mastectomy.

     sigh.

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2011

    For those initially diagnosed with DCIS via a needle biopsy, approx. 15% - 20% turn out to have something more than DCIS.  Most of the time, it's just a microinvasion, which usually doesn't change the treatment at all (except for the need to have the SNB). And yes, you're right - you can have invasive cancer that is node-negative.  Lots of women do. 

    If you have pure DCIS, you can't have nodal involvement.  For those who have a microinvasion, the risk of nodal involvement is about 10%.  If more than a microinvasion is found, then the risk of nodal involvement goes up. 

    So from where you sit now, the chance that you will have invasive cancer that has spread to the nodes is probably around 2%.  It's possible but it's not very likely.  Similarly, it's possible that you might need radiation after your mastectomy, but that too is not very likely.  I already knew that I had a microinvasion when I had my mastectomy - my microinvasion was found during my excisional biopsy.  When I had my mastectomy I had immediate reconstruction (with an expander and then later, an implant). Although there was a risk that I might be node positive and a risk that I might need radiation, both my surgeon and my plastic surgeon felt that the odds were low enough that we could go ahead with the reconstruction. As my PS said, if it turned out that I needed to have radiation, we'd figure out how to deal with it.

    I'd suggest that you talk to both your PS and your surgeon about what they think the risk is that you might need radiation, and if that were to happen, what it would mean if you did decide to go ahead with immediate reconstruction.  Find out what they think and how they would handle things, and make your decision from there. 

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2011

    I would tell you one thing. If I knew what I know now, I would NOT have had immediate reconstruction. In the beginning it seems like a great idea, "oh, I'll have only one surgery, it will be so much easier" but in the long run it's not easier. The surgery takes longer, the recovery takes longer than the two done separately. You might want to think of having the MX first, then if necessary the radiation, then the recon. And this way, if your skin gets too messed up by the radiation, you can have skin flaps.

  • rianne2580
    rianne2580 Member Posts: 191
    edited March 2011

    Question: Do all of the tumors in the breast, say you have 3 in different spots, have the same characteristics of ER+ PR- and HER2- (example)?

    If they find another IDC tumor after my MX, will it have the same hormone + -? Is this a dumb question?

  • brca1babe
    brca1babe Member Posts: 75
    edited March 2011

    I am not sure I am brave enough to have a mastectomy, live with a flat chest for a few months and then reconstruction.  That would make sense being that there is a chance (though small) that i could need radiation since the diagnosis might change from DCIS to IDC or be node +, but I don't think I can do it.

    This is hard!  I think it is so interesting the way everyone seems to play down DCIS, "oh it's just that" when by core biopsy alone, you just don't know the whole story and it may not even be DCIS and could be invasive or whatever.  the 15-20% that beesie mentions is a lot!

    I thought rianne2580's question is interesting, but I don't know the answer - do tumors generally have the same receptor profiles?  I know that over time they can change, but not sure about multifocal tumors.

  • mbordo
    mbordo Member Posts: 253
    edited March 2011

    brca1 babe-

    You bring up a good point - that is, one doesn't know their true diagnosis until final pathology after surgery is in.  My surgeon was very clear with me that what I had "appears to be DCIS - but we don't know for sure until the final pathology".  I had about 7cm of it, and a single focus of necrosis - lumpectomy & re-excision for margins - I wasn't told it was confirmed DCIS only until after all surgery was complete.  I did opt to have nodes checked due to the "unknown" factor and the fact I finally opted for MX which would make checking for nodes after the fact a more difficult process...

    I'd not heard about rads being a factor for flap surgery sounds like you need to discuss the particulars (odds etc.) w/the PS?  I saw my onc before the PS and my onc is very pro delayed recon (not sure why?) but the PS told me there was no reason not to have immediate recon and that I was an excellent candidate...perhaps talking to another PS could help alleviate some of your concerns and answer questions?

    Good luck - this sucks, doesn't it?

    M.

  • brca1babe
    brca1babe Member Posts: 75
    edited March 2011

    It does suck.  And what I only understood from reading these discussion boards is that you don't know that you have "just" DCIS until all the pathology is back, in my case after Mx.  That's scary. 

    One stat I am trying to find - anyone chime in if they know this - is what % of pre-op DCIS from core bx ends up being invasive ductal, I found that 10-15% may be microinvasive, but it seems that tends not to change the treatment much, so I am not worried about it.  I AM concerned about chemo, radiation etc.  My hope is that by going for Mx (which makes sense given BRCA1 anyway) I can avoid rads and chemo.

     Only two more weeks until surgery!

     PS said that they will proceed with immediate recon unless breast surgeon advises otherwise (if 3 or more nodes + during surgery is the guideline we are using).

    thanks so much for your posts.

  • rianne2580
    rianne2580 Member Posts: 191
    edited March 2011

    brca1babe

    My MX is Tuesday. I figure I can still back out on Monday. I had DCIS in 1994, I know I've repeated myself about this. Did not get microinvasion of IDC until now, 17 yrs. later. I had no treatment except for lumpectomy back then. I'm going with the path report from Johns Hopkins that I got back about a week or two ago. My local hospital gave me a path report of 4 mm if IDC. Big difference. And I have 1.2 cm of grade 3 DCIS in another quadrant of my breast, so MX highly recommended. I still don't like the idea. So, like you, I hate the thought of this surgery, but I guess you have to sacrifice in the hopes of living longer. I'm giving some of my tissue to research, maybe I'll try to think of it as donating my breast to science.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Brca1babe

    I am in about the same place as you are.  Originally as per mammo I was told I had DCIS stage 0 and my doctor made me think it would be a "walk in the park".  Sent me for an MRI which showed an area nearby "suspicious for residual disease.  Lymphnodes appear normal.  I then had a Stereotactic Biopsy which came back with DCIS High grade Comedo type associated with microcalcifications.  Had wide lumpectomy with Radio Frequency Ablation in which I am in a study for so I would not have to go for radiation for 6+ weeks.  Surgeon feels he got good margins and all went well but when my Path report came back 10 days later it revealed a "small nest of microinvasion. Surgeon felt it was micro and I did not have to have any aftercare just be watched closely.  I cannot take Tamox cause my ER/PR is negative.  After hearing all the stories here I am now vey nervous and feel I should see an Oncologist although my surgeon didnt recommend it.  Im not even sure now and I think I am right that I dont have just DCIS because of the infiltration but I think Im now considered to have IDC but who knows what stage?  Im so confused and scared.  I have an appt with Onco on 4/8 and hope she can shed more light on this.

    I hope this helps I was told if I had MX I would not need any radiation.

    I hope things work out for you.  I know doctors tell us NOT to read on the internet but Im sorry I feel we need to do as much research as possible for ourselves.

     Best wishes

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