Help I need some adivce!! I'm in a bit of shock!!

1american
1american Member Posts: 46

Had my biopsy on Oct 31 was told it was idc stage 1 grade 2 .Then I had my first surgery on Nov. 26 th. They said the nodes were clear but there were not clear margins and had to go back in. So the second surgery was on Dec 4th and right before I went to the operating room the dr tells me the the dx has changed to ILC ( at that point I had no idea what that meant ). Dr told me it was pretty much the same as idc. ...... I took the bandages off today and was in shock as how much of my breast is gone ( half the size of the other)!! We are still waiting to hear if the margins are clear with this surgery. I did ask if they weren't clear would the next step be a mastectomy and he said no we still have options !! He couldn't take much more of this breast before it was compleatly flat!!

I'm now thinking if I had this dx in the first place I probably would of choose the mastectomy .

Can I still choose it if the margins come back clear? Do I need to ask him to do further testing on the other side? If everything comes back good and I stay this way can I have reconstructive surgery ?

Comments

  • toomuch
    toomuch Member Posts: 901
    edited December 2012

    1american - I'm sorry that you had the shock of seeing your significantly smaller breast without warning. It would have been nice if your BS had prepared your for that but you should feel confident that you still have options. Even if you have clear margins, you may choose to go forward with a mastectomy or if you want to save your breast, I think that reconstruction is an option. Did you have an MRI prior to surgery? If not, it's something to consider if you still don't have clear margins.

    Best wishes for a quick recovery.

  • 1american
    1american Member Posts: 46
    edited December 2012

    Yes i did have an MRI . Is that what they would use for the other breast to determine that there is no ILC in that one. And when I had the MRI why didn't they know what kind of cancer it was in the first place. I'm beginig to think they don't know what there doing and that scares me,

  • Rdrunner
    Rdrunner Member Posts: 309
    edited December 2012

    They cant tell what type you have with an mri. Mri gives them size of tumour and will show it any where else in the breast or the other breast. My surgeon did tell me it is harder to get clear margins with IBC and in younger women.

  • 1american
    1american Member Posts: 46
    edited December 2012

    I don't consider my self young any more at 50

    My breasts have always been very dense. Would there be a chance of missing ILC on the MRI?

  • BonnieBee
    BonnieBee Member Posts: 26
    edited December 2012

    Hi..

    I also though my "top" notch doctor  didn't do everything the right way. I felt had he offered me the masectomy from the get go I could have been spared the agony of waiting, not knowing..

    A year later and a lot of reasearching and I realize that lumpectomies are really larger scale biopsies. Screening is never 100% correct.

    I went for the BMX because I had LCIS on the affected side..which is often found in the non cancer side( and was discovered after the surgery in the pathology report.

  • 1american
    1american Member Posts: 46
    edited December 2012

    I really don't know what to do at this point. I wanted to keep my breast but at this point I don't want them to be two different sizes. And if I choose the mastectomy I guess I will still have the scar from the lumpectomy ... Right?

  • momof3boys
    momof3boys Member Posts: 896
    edited December 2012

    I doubt you would still have the scar from the lumpectomy, but that would be a good question for a surgeon, which, should be a 2nd opinion from a new surgeon. I cannot understand how your pathology IDC v ILC could change when they had so much time to verify if there was a question. And to tell you shortly before surgery with the misinformation that IDC and ILC are practically the same thing is just wrong. I'd ask around and get a second opinion.

  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited December 2012

    I had a lumpectomy first - insurance only approved a mamogram on one breast as it shown as suspicious 6 months prior. They never checked my other breast after the biopsy and lumpectomy. I asked my breast surgeon  to check the other breast before I went on my way for my treatment plan. At the MRI they saw something in the other breast so at that point I opted for a BMX. I still have the lumpectomy scar. My BMX scars are hidden in the inframmary folds.

  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Hi there, and sorry you have to deal with all this.

    Give yourself a few days to start breathing again, and then I would urge you to get a second opinion. That your nodes are clear is excellent. 

    ILC is unfortunately sneaky and difficult to detect. For that reason many women with LCIS or ILC choose double mastectomy. I don't know if an MRI can miss ILC, but know from experience that it can miss LCIS.

    Usually some kind of recon is possible, even with extensive treatment. It is mostly a matter of finding the right doctor. The skill of the doctor matters in this regard, since it is just as much art as doctoring really. In other words, talk to several plastic surgeons when the time comes and don't rush into anything.

    Some of us have chosen to remain flat, some using prostheses, some not. It is not for everyone, but know that some of us are living perfectly well this way and that it is also a viable option.

  • 1american
    1american Member Posts: 46
    edited December 2012

    Thank you all for your posts. I am in a better state of mind today and am just going to take one day at a time and look to just fighting this!,,

  • Rdrunner
    Rdrunner Member Posts: 309
    edited December 2012

    I believe that current research indicates that for LBC mri can miss it, up to 10% percent are missed. Thats high. The plan for me after mri showed other breast clear was initially left mx, now after surgery I wish I had asked for double because therre is no doubt in mind given what I have read and the research and family history, I will be having the other breast removed.

    I have a question though, pre dx has anyone had nipple discharge that was spontaneous and expressed. not bloody.

  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Rrunner, yes, I had nipple discharge on and off for years after I stopped breastfeeding, usually just before my period, and on the breast that turned out to have cancer. It looked like milk, and was dismissed.

  • Rdrunner
    Rdrunner Member Posts: 309
    edited December 2012

    See that is what I have both breasts after breast feeding also but my youngest is 13 now and still was there. but mri showed nothing in right breast. I am planning on going back and removing right one anyway but wish I did it with left and worried that there might be lobular there too that is getting missed. I am going to talk to surgeon about it again.

  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Rdrunner, all I can say is that the BMX was one of those big decisions I felt 100% sure of at the time (and the initiative was mine, not the doctors') and a decision I have not regretted. The path showed all kinds of crap in the "good" breast, stage 0, hyperplasia etc. None of it had shown on any of the diagnostic scans done, and we did: mammo, ultrasound, CT and MRI. Before the surgery, they did a careful ultrasound to map some fibroids, to make sure they would be checked. The fibroids were just about the only non-malignant stuff in there, and also the only things that could be seen with the diagnostic tools.

    Theoretically it is, of course, possible that none of all that would have grown into invasive cancer. On the other hand, with my established track record, I really doubt that it would have stayed in check.

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