Prophlactic Mastectomy

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I had BC, 22 years ago and currently finished chemo for stage III ovarian cancer the end of Jan.  Technically I had Primary Paritoneal Cancer with very little to no involvement of the ovaries.  However it is treated as OC, because the cells of the Peritonium are ovarian.  Although I have not been tested for the gene, my doctor is sure, due to pattern of family history that I'm BRACA 2 postive.

I retired a year ago and had always planned a prophlactic mastectomy of my right breast.  Mainly because I'm tired of having to use a size 7 breast form, so I can match my 34D natural breast.  As I get older (59), I'm getting tired of toting it around and don't like to wear a bra around the house or when I'm working in the yard.  I've gone 22 years, but you never know when BC may pop up in that breast.

My question - if you have a prophlactic mastectomy do they still remove lymph nodes and does that limit being able to have blood work, blood pressure, IV's ect. on that arm.  Right now, I have everything done on the right side.  My surgeon even put my power port on that side.  I had some lymphedema years ago on my left arm so I'm very careful with it.  

I don't plan to have reconstruction. 

Comments

  • Pessa
    Pessa Member Posts: 519
    edited July 2011

    I had a prophylactic mastectomy 6 months after my involved breast was removed.  I did not have any lymph nodes removed from the prophylactic side and have no restrictions regarding blood draws, etc.

  • nagem
    nagem Member Posts: 353
    edited July 2011

    I had a prophylactic mastectomy a year after my cancerous breast was removed, and the surgeon did a sentinel-node biopsy. Since I had a full axillary dissection and radiation on the other side, I use the prophylactic side for IVs, blood draws, etc. I haven't had any range-of-motion or lymphedema issues with either arm--though I'm very careful with both. I would guess that you could discuss this with your surgeon and figure out the relative risks and benefits of SNB in your particular case. Symmetry is a wonderful thing! Good luck, M

  • firebird
    firebird Member Posts: 64
    edited July 2011

    I had a prophylactic at the same time as my other breast was removed. My BS normally does a Sentinel Node Biopsy on the prophylactic side as well, but I had the same concerns as you about lymphedema etc -- so I told her that I did not want the SNB done on that side. She did say that doing a SNB on the prophy side is not standard practice but she prefers to err on the side of caution. But of course the decision was up to me, and because there was no indication on the mammo or ultrasound of any problem in the other breast, we reached a compromise: I would get a contrast MRI done of the breasts before surgery, and if the other breast was "clean" then she would not do the SNB on the prophy side. That's exactly what happened, and so the SNB was not done; the pathology of the prophy side showed no evidence whatsoever of cancer, by the way.



    You might want to propose this same compromise to your BS if he or she normally does do an SNB on the prophy side. As my BS explained, most surgeons do not do this but the more cautious or thorough ones do.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited July 2011

    Hi starzhere,

    First, I'm so sorry to hear you've had to deal with another cancer. You sound so upbeat. I hope you've got all cancer behind you. Having a prophylactic mastectomy makes sense to me, given your history. 

    I'm a little confused about how an SNB can even be done with a truly prophylactic mastectomy. The sentinel node is found by tracing the drainage path from the tumor site to the nodes. If there's no tumor site, how could this be done? Perhaps nagem and firebird had some abnormal cells in the prophylactic breast and those were used as starting points. My understanding is that normally, unless there's a tumor in the breast, an SNB wouldn't be necessary or even possible.

    Barbara

  • firebird
    firebird Member Posts: 64
    edited July 2011

    Barbara, that's a very good point about the SNB! One I didn't think to ask because the moment my BS brought up the subject, I immediately knew that I didn't want to have to deal with two risk-prone arms instead of just one, especially since the prophy was on the right and I am right-handed. And there was no indication on either the mammo or the ultrasounds that were done before surgery that any abnormal cells existed in that breast.



    I poked around online and found some info on the subject; they inject the dye into the periaureolar region (fancy name for "around the nipple"). http://www.ncbi.nlm.nih.gov/pubmed/16955504 The title of the paper is "Selective Use of Sentinel Lymph Node Surgery During Prophylactic Mastectomy."



    But how exactly they trace where the dye goes from the points of injection is something I don't know. I don't subscribe to PubMed and so can't read the entire study (which I'm sure describes it all in detail), only the abstract.

  • samon
    samon Member Posts: 100
    edited July 2011

    Most doctors will tell you that there is no risk to your arm if you had no nodes removed or even just the sentinel node removed, but there have been a few on these boards that will tell you that they have developed lymphedema even though they had no nodes removed. You might want to also ask your question on the lymphedema forum.

  • beacon800
    beacon800 Member Posts: 922
    edited July 2011

    gosh, if your doc thinks you are brca positive, maybe you should go ahead and have the testing done.  I figure your insurance company would pay for that and surely if you are postive they will pay for the prophy mx.

    I have a bilateral MX and went to the point of insanity figuring out whether to do sentinel bx or not.  Like you, I was really concerned about the long term implications since we were talking about both my arms, etc.

    I agree with others who posted that you can have an MRI and if they find nothing then skip the sentinel.  I did this.  We had some areas of enhancement and biopsied them prior to the mx.  All b9, so we went ahead with the surgery, no sentinel and happily there was no cancer.  I have no signs of LE and have had blood draws from my non dominate arm.  There is always some chance of LE, even with no nodes out, but extensive (I mean really extensive) research showed me this is very, very rare.  

    Good luck to you in your decision!!!  

  • Delilahbear
    Delilahbear Member Posts: 466
    edited July 2011

    I had a prophy BMX 2 years ago and the BS did probe the SN and felt it was not enlarged so did not remove it on either side. I am having some problems in the axillary (under arm) area of rt side and she found 2 slightly enlarged nodes there, but we are watching them with ultrasound. She thinks it is just part of the healing process as I have had 2 sets of implants then both sides reinforced with Alloderm at 2 different surgeries, 1 for each side 6 months apart then had to have rt. implant exchanged for leakage (I have saline). PS also did fat excisions on both under arm fatty deposits, one of which had 2 lipomas. Too much surgery in the last 2 years! I need a scar revision on rt. foob, but he won't do it for the next several months, says they need to settle in and have no trauma.Don't think SNB is common for prophy MX.

  • 2Nan
    2Nan Member Posts: 45
    edited July 2011

    Hi starzhere,  I had a bilat mx, right side was prophylactic, they did not do sentinel node biopsy on the right side, found benign hyperplasia in right breast during surgery, that did not show up in MRI I had prior to surgery.  I am about 9 months out from my surgery and I still get scared just thinking about having cancer. I was lucky though because they caught mine so early, I didn't have to have rads or chemo, no Tamoxifen either.  It still is tough because it changes your life so much.  I really don't miss my breast, I just miss my normal, so now I am trying to make a new normal.  I am so grateful for kind people, this website and all the support I have had from my family,freinds and co-workers.  I would definitely discuss your options with your surgeon, if there isn't any reason to do the SNB then don't do it. I have several friends with only one breast and they are thinking about having the other one removed as well or wish they would have done it to begin with, that is one reason why I had the BMX because of talking to all of them.  I felt it was the best decision for me.  I know you will get the answers you need and  I will keep you in my prayers.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited July 2011

    I hope to hear more thoughts on this. I had my left breast removed a year ago, multi focal DCIS, 8 lymph nodes, all were clear. Now my right breast is showing dense and calcifications, and aside from this, I really dislike having one large breast.

    I am having a MRI in August and will talk to my surgeon then. Mostly I am worried about having lymphedema...and certainly cancer again. Even a year later I am reeling from the rapid diagnosis and mastectomy....

  • nagem
    nagem Member Posts: 353
    edited July 2011

    Re the SNB for my prophylactic mastectomy: Barbara made a good point about how do you know where the sentinel node is if you don't have the tumor as a starting point to inject the dye. But I checked my pathology report, and it says that two sentinel nodes were removed from level 1 on the prophylactic side. I'll have to ask my surgeon when I see her for my next checkup how she chose those two.

  • NSWTD
    NSWTD Member Posts: 210
    edited July 2011

    I had a unimast in March 2010 - DCIS - I did have  SNB. Only 3 nodes removed.  They injected dye around my areola and it traveled to the first node...mine actually hit about three at the same time, so the BS took 3 nodes.  I have had zero probs with any swelling., lymphedema,etc.  My BS and PS never even mentioned the possibility of such with the SNB. I am very glad I did the SNB, mine were all negative and that was such a relief.  

    I have never read that you must have a tumor to do a SNB. I had no lump/tumor...only micro calcs/DCIS

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