It's official... DCIS (ER+/PR+)

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CrunchyPoodleMama
CrunchyPoodleMama Member Posts: 1,220
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi, girls... well, I'm *officially* DCIS. Or more specifically: DCIS, nuclear grade 2, solid, cribiform and papillary type microcalcifications identified. Estrogen receptor: >90% Progesterone receptor: >80%

He said what all this means is that he'll do exactly what I asked for in the first place... a lumpectomy

He gave me the choice of having a sentinel lymph node removed so they could check it for cancer, and I said NO. My lymph nodes are clear from the ultrasound and mammo so I'm going to work off the assumption that they are clear and needn't be screwed with. Of course, if they do find a small amount of invasive cancer that they didn't find in the biopsy, it will mean having to have lymph nodes biopsied later, but I'll take that chance.

I knew there is a such thing as mastectomy with immediate reconstruction, so I asked him if there's a such thing as lumpectomy with immediate reconstruction. I guess they don't do it that way, so I may have a caved-in boob for a while and will have to have a cosmetic surgery to fix it (since my boobs are small and this whole area including the microcalcifications is 1/4 to 1/3 of my whole breast). Oh well, I can deal with that!

Anyway, just wanted to officially say hello here, and thank you for bearing with my dumb questions earlier! 

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  • baywatcher
    baywatcher Member Posts: 532
    edited November 2009

    Good luck on your surgery, Julia. I think you are smart to keep them away from your nodes. I will be thinking of you next week and wishing you the best.

    Edited to ask: Are you getting rads?

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  • Jelson
    Jelson Member Posts: 1,535
    edited November 2009

    sounds like you are good to go!

    keep us posted

    Julie E

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited November 2009

    Thanks, girls! baywatcher, he said if he does only a lumpectomy, I will need rads because he said the chance of recurrence is "much" higher without rads (I need to find out the exact stats on this and what the absolute benefit is). But if I do a mastectomy, I won't need rads. (I'm guessing that must be typical, from the way he explained all this, but I still have a lot to learn about the standard of care for DCIS.)

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  • desdemona222b
    desdemona222b Member Posts: 776
    edited November 2009

    Julia -

    When are you having your surgery?  Good luck with it - my lumpectomy wasn't that bad.  Just stay stocked up on that frozen corn.  Smile

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited November 2009

    D - it's on Wednesday (day before Thanksgiving). They told me to basically plan to spend the whole day there. Thankfully, my husband is going to take the day off and my parents are coming into town (none of them were planning on doing that until the surgery was scheduled)... so I've got plenty of people who can make frozen corn runs for me if mine gets too smooshy! Laughing

    I'm honestly not that worried about it... a D&C is FAR worse, emotionally... I guess my biggest fear is waking up without a nipple. LOL

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  • PSK07
    PSK07 Member Posts: 781
    edited November 2009

    Julia - good wishes for you.

    My surgeon doesn't do SNBs with lumpectomy unless there is already a sign of invasive. He believes that he can go back and to the SNB if a small amt of invasive is found in the pathology. Worked for me!  The lx removed about a ping-pong sized amount of tissue. You can't even tell today there was anything removed (2 yrs post-surgery)

    This is the research I was referred to.

    http://www.ncbi.nlm.nih.gov/pubmed/16461781ordinalpos=30&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

    One of the writers reviewed my case and recommended rads. It wasn't the greatest thing, but I got through it.

    Take care of yourself. You may feel cruddy. The pain wasn't too bad for me, but the anesthesia always makes my BP drop for a few days. Hopefully your hospital will give you a little pillow to use to rest your breast on so you can lie on your side. Helps when you try to sleep.  You'll probably want a sports bra to wear 24 hrs/day til things are healed. It also helps keep the bag of peas on you.

    good thoughts headed your way.  Pam

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited November 2009

    Pam, thank you for the info, tips, and link! You're the third person today to tell me that in spite of having had a seemingly large area removed, it's barely noticeable now (even with no reconstructive surgery). That's good to know (although I'm so small-breasted, I am guessing I may not be so fortunate)... he's a very skilled surgeon so I guess if anyone can make my boob look as normal as possible afterward, he can.

    And yes, as desdemona had suggested before my core biopsy, I will be stocking up on the frozen peas/corn! Laughing

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  • lewisfamily503
    lewisfamily503 Member Posts: 621
    edited November 2009
    Good luck Crunchy Poodle  (LOVE your name!)  I think you are making a great decision. If I hadn''t done the mastectomy, I would have made the same choice as you regarding the SNB.  I didn't have a choice since I went the mastectomy route.   I hope you have great results with your reconstruction.  After all, what is "normal" anyway?  I will be thinking of you next week and sending good healing thoughts your way.  It sounds like you will have lots of support!
     
    Hugs, Anne
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  • Sue-61
    Sue-61 Member Posts: 599
    edited November 2009

    Crunchy, great news. If they take out some breast tissue, you can get these little prothetics to put in your bra if you need balancing. My sister, who is very small breasted (she doesn't have cancer by the way) has her own set of what I call "chicken cutlets" that she uses. I think Victoria's Secret sells them.

    Good luck; with hormone +, sounds like a good outcome. As one nurse said to me, "oh, you have the good cancer". Go figure. Sue 

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited November 2009

    Thanks, Anne and Sue! LOL at the chicken cutlets... I guess those would work better than the tissues I used to stuff into my bra when I was unhappy about my not-quite-36B's!!

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  • makingway
    makingway Member Posts: 799
    edited November 2009
    CrunchyPoodleMama-You're one smart woman ;) If I had it to do over again I would do just what you're doing. No mastectomy and no axillary lymph node dissection. I thought I was informed but now realize I didn't grasp the reality of the after results, the limitations of reconstructive surgery and the suffering that occurs from the alnd. I wonder if the hospital keeps the tissue from the surgery. Myabe they can put it back in me.... minus the tumor of course. Good luck with your surgery. I'll be thinking of you Wednesday and sending good energy your way!
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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited November 2009

    Thank you, makingway... sometimes I feel like I'm doing everything the wrong way, but I appreciate your validating the "aggressive but not unnecessarily invasive" approach!

    I wonder if the hospital keeps the tissue from the surgery. Myabe they can put it back in me.... minus the tumor of course.  

    Ooh, the doctor who comes up with a way to do that will be my hero!! Wouldn't it be great if they could remove the tissue, radiate it to heck while it's OUT of your body, then reinsert a couple of months later?!

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  • SoCalDawn
    SoCalDawn Member Posts: 51
    edited November 2009

    I just got home yesterday from what was supposed to be sentinel node biopsy and lumpectomy. I had a severe allergic reaction to the blue dye and went into anaphylactic shock and spent the night in ICU. They didn't get to the lumpectomy so I have to go back for that. When my BC surgeon does the lumpectomy, I will have a Flap Advancement procedure that sort of "zips it up" from the inside to minimize caving. Reports from his other patients suggest that there is little or no difference and often looks better than before. My insurance is not covering it. Though there is a federal law requiring reconstruction to be covered after a masectomy, there is no such law for lumpectomies. His charge to me is $600 to do this. Are you working specifically with a breast surgeon or a general surgeon?

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited November 2009

    Dawn, how scary!! Yuck! That is good to know they can do that -- I am writing that down so I can ask my surgeon about doing it. (I'm willing to pay $600 out of pocket to look at little better post surgery!!) My surgeon is a breast specialist... one of the best in the area... so that's one thing I have going for me.

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  • Sue-61
    Sue-61 Member Posts: 599
    edited November 2009

    SoCalDawn, what a horror show you have been through. Why will your insurance not cover this procedure? Is it being done due to the fact that you had a reaction to the dye?

    You need to submit an appeal to your insurance if this is the case. If it is the only SAFE way to get your cancer taken care of, call and speak out and be a squeeky wheel. Or request a casemanager.

    Sue 

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  • MsBliss
    MsBliss Member Posts: 536
    edited November 2009

    I had two lumpectomies with onco plastic recon during the surgery....I didn't request it, but my surgeon did it and there is complete symmetry....you cannot tell I had surgery but for the scar at 12 oclock.  He had to go back in for a dirty margin and remove the first recon and take additional tissue, and there is still no deformity whatsoever.  I don't know how the heck they did it.  Ask your surgeon if he can move a flap of tissue to compensate for the lumpectomy--if he has experience with this.  It is quite remarkable.

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  • SoCalDawn
    SoCalDawn Member Posts: 51
    edited November 2009

    Hi Sue 61,

    The lumpectomy will be covered, just not the reconstructive portion (Flap Advancement) by Blue Shield as they consider this cosmetic. The Federal Law that requires insurance to cover reconstruction apparently only applies to reconstruction after masectomy vs lumpectomy.

     The allergic reaction to the blue dye during the sentinel node biopsy apparently happens less than 1% of the time (yes, that's the kind of year I have had, lol). It caused all my vitals to drop on the table and they first wee concerned I had thrown a blood clot that had travelled to a lung then determined it was an anaphylactic allergic reaction and began epinephrine and all that goes with that. I was sent to ICU for monitoring and am now on prednisone.

    I go back to meet with the surgeon today and am hoping they can do the lumpectomy this week. I am so ready for this to be done.

    All the best, ladies!

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