3 lumpectomies and still no clear margins...opinions

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Blackhawk41
Blackhawk41 Member Posts: 14
edited May 2018 in DCIS (Ductal Carcinoma In Situ)

Hi All,

I'm a 48 year old female. Diagnosed back in Dec. Third surgery complete and my margins still aren't cleared. Surgeon was very hopeful but I've now run out of room to get anything else. Headed to follow up Monday and will assume she'll suggest a unilateral mastectomy. I'm er/pr+ and pretty sure they will still put me on meds after (haven't even met back up with mo yet). I'm also negative on genetic testing and quite honestly never thought DCIS would lead me to this. I knew it could, but just stayed in denial. Do I feel like this has been a waste of time and healing? No. I've always held out hope for breast conservation.

That being said, I would appreciate any input about healing time, whether you chose bilateral vs unilateral mx (even if no issues with other breast), and any other advise you can throw my way. I also have implants already (since 2005) so reconstruction would be slightly different I would assume. Anyone go through this already having implants?

I've really tried to stay strong throughout all this and felt fortunate that I didn't have an invasive cancer, but clearly an extensive high grade DCIS is not a walk in the park either. What really sounds ridiculous to probably most of you is my fear of those drains. I can't stand the sight of blood and can't even watch them draw blood or put IV's in me (I'm such a boob - pun intended!)

Thank you in advance 💗

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2018

    ((((Blackhawk41))) You're not a "boob"! Nobody likes the drains.

    You may find this section on mastectomy and reconstruction: helpful http://www.breastcancer.org/treatment/surgery/mast...

    Your breast reconstruction surgeon will be able to help guide you to what will work best for you, but hopefully others will chime in.

    Hang in there, and we're sorry to hear you are having so many procedures!

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  • LAstar
    LAstar Member Posts: 1,574
    edited April 2018

    Hi, Blackhawk41 -- I'm sorry you find yourself in this situation. I had two unsuccessful LX and then opted for BMX. I decided to remove the unaffected breast because some suspicious spots showed up in my MRI, but nothing was found there (possible false negatives from having the MRI at the wrong time in my cycle). I considered my breasts to be a "matched set" and BMX seemed like the right decision, but it also doubles the risk of complications if you are planning to reconstruct. Having a side that is strong and unaffected by surgery is a bonus during recovery. Because my MX margins were clear (~1mm which is fine for MX but not for LX), I did not need radiation. I am not taking AI since I had BMX. I had flap reconstruction with my BMX, and the healing time was long (~6 weeks to feel 95%). FYI, I am a total fainter and hate the sight of blood. I was pretty blasé about shots and blood draws after all the surgeries. The drains were not terrible, just annoying and they don't last long in the breast area. My biggest recommendation is finding a plastic surgeon that does good work (ask for photos and recommendations) and listens to your concerns. Best wishes!

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    Hi,

    I had a UMX and recover was quite quick. I had almost no pain (was on only Tylenol after 1-2 days) and doing things around the house was not too difficult because I still had one good arm. I had wanted a BMX initially, but now I'm happy I chose the UMX. I had a tissue expander put in and haven't had exchange yet, but I heard that is even easier. My advice is to not be afraid. I really don't think it's so bad.

    FYI, I had skin/nipple sparing and the cut was around my areola. Now that it's healed you can't even tell I have ever been cut open. Yeah, my nipple isn't perfectly shaped, but whatever, it's not that bad.

    Rebekah

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  • Blackhawk41
    Blackhawk41 Member Posts: 14
    edited April 2018

    Thank you ladies! I do agree rdeesides that not being afraid is key. I’m almost 100% sure I won’t be able to keep my nipple because of where my margin didn’t get cleared. That freaks me out a bit but I’m to the point of just get it done and out! I don’t have any issues in my right breast so wouldn’t remove it unless highly advised. The other challenge is my body doesn’t do well on narcotics so I’m left with Tylenol or ibuprofen which doesn’t always cut the pain sadly. And I was thinking having an “good side” would be beneficial LAstar. My nurse navigator has shown me a plastic surgeon that’s been used and I hope I can meet with him. The whole process just seems overwhelmingly

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  • Peppersbike
    Peppersbike Member Posts: 1
    edited April 2018

    I had 3 lumpectomies as well. DCIS with IDC. My BS recommend after the third attempt I show have a mastectomy. I thought for a bit on what to. I had 4 biopsy prior to the lumpectomies and 4 rounds of chemo. I did not want to always have that fear that my non cancer side would end up getting cancer as well. I went with a BMX. Which in the end was good for me because my path report came back with pre cancer on my non cancer side. I’m done with chemo and have had my exchange. Healing fine and looking for to getting past this.

    This the first time I have posted something. Your situation is too similar not the chime in. I hope this helps.

    Good luck! Hang in there you tough choices to make. Fear made mine easy

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  • Blackhawk41
    Blackhawk41 Member Posts: 14
    edited May 2018

    thanks peppersbike for your reply! I just had post op from 3rd lumpectomy and I'm going with umx because of a couple factors. 1, I don't have any genetic markers for bc (or serval other cancers). 2, I want a "working" arm while healing and if I have the option will take it. Thankfully I'm right handed too. 3, they have not found anything other than DCIS (yes still thankful for that) and I know I'll be screened well and be put on meds by my mo. I had genetic testing done prior to all surgeries and would've not thought twice about a bmx if positive.

    The drains still freak me out but I understand the purpose. My surgeon actually had to do some draining from my second surgery. She wasn't conservative trying to get me clear margins.

    Thank you for sharing and hears to healthy healing for you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Welcome, Peppersbike! Sorry you have to be here but we're so happy to see that you decided to join and share your own experiences in this wonderful Community. If you have any questions for us please do get in touch.

    Warm wishes,

    The Mods

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  • TrmTab
    TrmTab Member Posts: 832
    edited May 2018

    I had 2 LX and then the UMX My surgeon wouldn't try a third time... I was happy to have always had a good side during recovery. MX and exchange were both quite easy for me.

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