bad margins, new decisions to make

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lollyo
lollyo Member Posts: 85
bad margins, new decisions to make

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  • lollyo
    lollyo Member Posts: 85
    edited March 2010

    My lumpectomy was 3-15 and my surgeon called on Friday afternoon with the results. I do not have the path report in my hot little hand yet, but I would like to share with you amazing women where I find myself so far, which is even further down the crazy DCIS rabbit hole.

    • Of the 29 tissue blocks (how big are these things?) taken from my right breast, every single one was positive in the margins. While I have not read the complete report the good news is that it all appears to be DCIS. I knew going in that I had 2 areas of DCIS, 2 cm each that had been found on the mammogram and confirmed with the stereo tactic biopsy. My logic slipped a little when I was talking to her and I said "so its everywhere?" She replied, "everywhere we looked..." So no re-excision for me, I am headed straight for a mastectomy. We discussed reconstructive options and scheduling and arg...my head is spinning. I would love some thoughts about the following:
    • I am interested in the decision-making process that some of you have had to make between DIEP and TRAM flap reconstruction.
    • I asked the BS if I should consult an oncologist because of my concerns about the left breast and she assured me it was a separate system. (mammogram that diagnosed DCIS and theoretically cleared the left was 1-10) However, it seems to me if one elects a one-time reconstruction option without throughly checking out the left breast, this could leave me without options. Am I now thinking the DCIS is everywhere because of what they found?

    From here I will be meeting with 2 PS's to discuss options, and then the famous medical scheduling issues begin. I suppose that the good news is no radiation and the Tamoxifen risk-benefit ratio changes now and it is not recommended. I am a little daunted by the big surgery, time needed off of work and the long recovery times.

    As a former lurker on these boards I cannot tell you all how your experiences have helped me prepare for what I heard yesterday, thank you.

  • hrf
    hrf Member Posts: 3,225
    edited March 2010

    If you choose either a tram or DIEP, my understanding is that it a one time opportunity as they can't go back to the abdominal area a second time for a second flap if you wanted to do a second breast in the future. However, if you don't have rads, you can do implants which is a good option for many. Best to talk to a PS to find out the pros and cons of each procedure for now and for the future.

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    Boy, does your situation sound familiar.  I had an excisional biopsy - same surgery as a lumpectomy except that I hadn't been diagnosed yet - for 2 known areas of calcifications. What came back was that I had DCIS in both those areas, and all the margins were dirty.  Plus I had the little surprise of having a microinvasion too.  So like you, I was headed to a mastectomy.

    What your surgeon said about the other breast is absolutely true.  It is completely separate and DCIS cannot travel from one breast to the other.  But that doesn't mean that you may not have other unrelated problems with that breast and this is something you should investigate thoroughly before you make this decision.  This is particularly important since you are choosing a reconstruction method that can only be done one time.  In my case, I was having implant reconstruction (so I can't help with the DIEP vs. TRAM decision), however my surgeon still insisted that I have an MRI prior to surgery.  His explanation was that he wanted to have the best idea possible of what was going on inside my breast before he operated.  And he also wanted to be as sure as possible that my other breast was okay because if something showed up, we might as well deal with it all at once.  My MRI showed that my breast with DCIS was in fact full of breast cancer, so that confirmed the mastectomy decision, while my other breast showed up perfectly clear on the MRI (despite a number of previous biopsies).  So that really helped me be comfortable with the decision to have a single mastectomy.  

    My suggestion is that if you have not had an MRI, insist on having one prior to surgery.  It can really help with your decision on a single vs. bilateral.  I know it did for me, and I know that it has for many other women who've come through this board.

    Good luck!

  • lollyo
    lollyo Member Posts: 85
    edited March 2010
       Thanks to both of you for your replies. I'm sure to my BS this seems straight foreword, however I do feel shaken by the extent of the DCIS found in the right breast. My mammogram from last year was "clean," so now I am beginning to understand that the microcalcification are only hints of what is going on, one is never sure about the total pathology. Your replies help me substantiate my concerns about the left breast. I did have a biopsy there 5 years ago for a calcification which had a benign finding, but now that seems to be something to pay close attention to particularly if I might be choosing a one-time reconstruction technique. So, thank you for the validation and I will discuss this with the PSs I will meet with, soon, I hope.
  • sweatyspice
    sweatyspice Member Posts: 922
    edited March 2010

    One more voice saying it's true that you only get one shot at using your abdominal area.  That was one of my concerns when thinking about a unilateral mastectomy.

    In the end I didn't have a mastectomy at all, but for a long while I thought I would and went through the planning/decisionmaking process.

    Implants would have looked really silly on my body with one large saggy breast and one smaller perky one, so I really wanted to do a tissue transfer recon; but I was very concerned about only having one shot at it (I just had a 'gut feeling' about that) and I was also desperately trying to find a way out of having a mastectomy at all - which, due to my particular presentation, I was finally able to do.

    I'd recommend a MRI to try and make sure there really IS nothing currently going on in your "healthy" breast. 

    Also, bear in mind, as I was told, if you ever needed another mastectomy, you could always do a lat flap or S-GAP or something, there are other donor sites.  Are you comfortable with that?

    In my case, I ended up having surgery on both breasts - and found that there was residual LCIS in the "bad boob" plus ADH (or ALH) in BOTH breasts, even the "healthy" one.  So, although I'm planning on rads and Tamoxifen, I kind of think I'm a recurrence waiting to happen. 

    If I do end up with DCIS (or worse) again, I'll do the flap surgery then.  And, for me, I'm glad I've preserved the option.

    But if I'd had no choice other than mastectomy, I'd probably have done DIEP and then another donor site later, if it came to that.  I was all about preserving what I could as long as I could.

    Best wishes on your decisionmaking, it's awfully hard.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited March 2010

    This is such a difficult decision and unfortunately you are asked to make personal and important choices just when your head is spinning so fast that all you want to do is freeze time. I knew that I wanted to have as much information as I could (and I'd become familiar with all of the plastic surgery options) so I consulted with a diep experienced plastic surgeon BEFORE my partial mastectomy surgery, and for me, I decided that if I ultimately had/have a total mastectomy, I was going to do immediate diep reconstruction.  Even though the tummy fat is a one-time use thing, I also decided that I'd do just 1 breast removal rather than pro-actively removing the second.

    I remember during this process just wanting someone to please tell me what the right thing was to do -- partial or total mastectomy, and then if mastectomy, 1 breast or 2, avoid the rads by going mastectomy, avoid the long surgeon and recovery by choosing either no reconstruction or implants rather than diep. blah blah blah. So even though I wound up not using the plastic surgeon because margins were OK, I am here to offer you the very best wishes on getting the facts and then following your heart to make a decision that you can stand behind. No regrets with the decision has been my motto, no matter what the future holds, I made the best personal decision with the information I had at the time. It is truly awful and awfully hard.

  • virgodream
    virgodream Member Posts: 3
    edited March 2010

    I am 4 yrs. post mastectomy and immediate reconstruction/ free tram flap.  I too considered DIEP vs. free tram, but my PS, a world renowned physician in Cleveland, Oh, recommended against the DIEP.  The free tram is amazing.  Looks very natural and the tummy tuck was like "making lemonaide out of lemons"!!  If I should need a second reconstruction (God forbid please!!) she said she could access other body areas to harvest fat!!  Recovery was bearable!!  I rested for about 2 weeks and gradually returned to all activities with three months.  Best decision I ever made!!  PS also advised against implants!!  Much of her surgery is removing them after failures and dissatisfaction!!  Beware!! 

  • lollyo
    lollyo Member Posts: 85
    edited March 2010

    Wow, thanks all of you for replying! All of you are or have been living in this alternate universe and while many of my loved ones are generous and kind they are starting to have no idea what I am talking about! As the treatment progresses, so does the complexity of the language and the decisions.

    Virgodream, what you said reminded me of what my BS said. She seemed to be discouraging me slightly from the DIEP, due to the risk of vascular complications. She said that with the flap she sees far fewer women needing to return to the OR. Of course, my head was spinning a bit due to the super-bad margin news, so I think this is what she meant.

    Its good to hear about those of you who decided to keep the opposite breast. I had an amazing phone call from an old friend of my mother's who had a mastectomy at 47 (same age as me) and now is 76, wears a prosthesis and no problems in the other breast for decades! I am understanding the truly unique nature of each situation, but it really helps to think it out . Also, if there is a problem in the opposite breast there certainly seems to be lots of other places where they can harvest fat - no problem here! (I am aware that they do not accept candidates for these surgeries with a BMI over 30, so no eating myself out of reconstruction!)

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