Please help! BS changed her mind about areola sparing

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girltravel77
girltravel77 Member Posts: 12
edited June 2014 in DCIS (Ductal Carcinoma In Situ)


Hi everyone,


I had a bi-lat nipple sparing mastectomy on 9/26. DCIS measured 8.7 cm in the affected breast, intermediate and high grade but no signs of invasion, and the path report stated that the nipple/areolar complex base margin is positive. BS did not biopsy the nipple at the time of surgery, I'm guessing because I asked her to spare the nipple in the initial surgery no matter what. I didn't want to wake up and be surprised, although I would not have minded a biopsy to be performed at the time to know if it was positive for DCIS.


At my first post-op appointment, my BS said that the nipple has to go based on the path results, but she will keep the areola. Her reasoning was that the areola is essentially more skin and doesn't have ducts in it. In the meantime she sent me back to my oncologist and rad oncologist. I'm lucky in that they are not recommending radiation or chemo right now. Both of these doctors thought of the nipple/areola complex as one entity and were surprised that my BS could take the nipple without the areola. They said to talk to my BS more to understand the risks etc. I had emailed some of my questions to the BS, and eventually requested to have another follow up appointment with her.


When I met with the BS again, she acted angry and annoyed that I asked so many questions. She actually said that she felt like she was being depositioned because I brought a notepad and took notes at every appointment. She said she was going to make it simple, and was not comfortable sparing the areola anymore and my only option is to have the whole thing taken. I was very upset, since she had led me to believe differently and she originally said that we'd make decisions as a team. I didn't want to delay the re-exision because I am very anxious to put this whole thing behind me as soon as possible. Now my surgery is in two days and I keep going back and forth as to whether my BS' decision is the best for me or if she made it based on her emotion. On the one hand I know it could make sense to take the whole thing considering the extent of the DCIS, the fact that it was close to the nipple and my age (I'm 36). But I can't help this scary feeling that my BS changed her mind out of emotion and other BS' might be willing to spare the areola and it wouldn't increase my risk of recurrence by much at all. My healthy breast will still have the spared nipple, and I'm concerned about the aesthetic look as well as having another incision at a donor site for the areola reconstruction of the affected breast. I have an HMO, and it will be a very long process to get a second opinion and get approval from insurance to have a different BS perform the re-exision. I'm so torn, feeling like I should just go through with this surgery, but afraid about having regrets because of my BS' attitude. Please help!!!

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  • girltravel77
    girltravel77 Member Posts: 12
    edited November 2013


    I had gotten a second opinion from another BS before my bilateral NSM and she said I could email her with questions. Here is her response:


    "I think you have at least 3 options. For one, yes, you could consider removing the nipple. If the base of the nipple was the only margin that was positive, this should be sufficient. The second option is to try to have a “punch biopsy” performed through the nipple. A 5 mm punch would usually core through the nipple and would help to take out any residual tissue present within the nipple but could preserve the “walls” of the nipple. Although the nipple will be extremely floppy and may look like it could die initially, it very well may “perk up” with additional time. Worst case scenario would be that it scabs over in which case you would have essentially “option 1” performed. Best case scenario, you would still have a nipple, albeit a little smaller perhaps. The third option would be to do nothing. It doesn’t sound like this is an option that you would be willing to choose, but technically, it is an option. A fourth option would be to remove the nipple areolar complex, but it doesn’t sound like that is necessary based on the information that you have shared."


    Now I really don't know what to do.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited November 2013


    Sorry you are facing this dilemma. Have you looked at any of the sites that show pictures of women and the tattoos, such as Vinnie Meyer's site? This may help you make a decision. I was able to keep my nipple on my noncancer side, but had to have the other one removed due to proximity to cancer. This had me worried initially about matching a future tattoo to my remaining nipple/areola. However, after looking at pictures, I am much more at ease.

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  • girltravel77
    girltravel77 Member Posts: 12
    edited November 2013


    Hi BayouBabe,


    Thanks for your message. I have looked at Vinnie Myers work and am very impressed. Are you planning to just do the 3d tattoo or have the nipple/areola reconstructed and then tattooed? I am just not looking forward to another surgery to reconstruct it before the tattoo, and feel like it will be weird to look down and see the projection of the nipple on my non-cancer side and no projection on the other if just choosing the tattoo. Do you plan to go to Vinnie Myers? I've considered flying to see him and pay out of pocket. That is if I keep moving forward with my current BS.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited November 2013


    I am planning on getting a nipple reconstructed, but only because I need one more round of fat grafting anyway - the two will be done at the same time in April. I am seriously considering flying out to Vinnie when I am finished. Since I need things to match, I know I need someone who is GREAT, not just GOOD at tattooing. My husband at first did not understand the need to go to Vinnie, rather than the artist my PS uses, but once he looked at the pictures he agreed we can save up for the trip if I choose that route.

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  • girltravel77
    girltravel77 Member Posts: 12
    edited November 2013


    That's exactly my thought too - I need a great not just a good tattoo artist to be able to get it to match the other nipple. Well, it seems like my dilemma is solved. I got up the nerve to speak with my BS again and this time she was pleasant enough and actually explained WHY she changed her mind. She didn't feel confident that she could get clear margins according to the path report and was hoping that the radiation onc would be able to clear it. Since talking to the radiation onc she changed her mind because he didn't think that he could clear it with radiation. Although it's not a decision that I like, I will be able to live with it if it means a greater chance of having clear margins in that region. It also feels better to have had a respectful conversation with her before going into this next surgery. Thank you again for being there BayouBabe - it helped just to be heard. Good luck with your nipple recon and tattooing - maybe I'll see you at Vinnie's. =)

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