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LCIS blog- preventative bi-lateral mastectomy

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  • ArleneMarie
    ArleneMarie Member Posts: 89
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    I am throwing this out there.  My mother-in-law-just had a mastectomy on one breast and chose not to have reconstruction since she is 81.......a very fit 81.  She is very depressed because of the way her body looks now.  Did anyone choose not to have reconstruction and then later went back?  Or, if you chose not to have reconstruction, how did you get back the body image?

    I still love my reconstructed boobs and it has been almost three years so I need some input.

    Thanks,

    Arlene

  • Pattyp121
    Pattyp121 Member Posts: 1
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    I was diagnosed with Atypical Ductal Hyperplasia in my right breast in Aug 2012.  In October 2012, I had a lumpectomy, and was diagnosed with LCIS.  After meeting with a high risk specialist and my breast surgeon, it was recommended I have a double mastectomy, which I had in March 2013.  I also opted to have immediate reconstructive surgery with silicone implants, which eliminated a second surgery.  The surgeon advised me that I made an excellent decision to have the preventitive surgery, as the pathology report was worse than expected.  Having the surgery was a no-brainer for me.  My risk of getting breast cancer was 80%.  My doctors did not recommend taking Tamoxifen for 5 years and having mammograms every 90 days.  They felt the double mastectomy was in my best interest.  It's been almost 6 months since the surgery and I have no regrets.  Having immediate reconstructive surgery was difficult but my surgeon was wonderful.  One of my implants didn't settle into the pocket as it was supposed to, so I sought out physical therapy, which has made a tremendous difference.  I also took muscle relaxers for approximately 2 months, at the end of each day, which really made a big difference.  I returned to work, as a Probation Officer, 3 weeks following the surgery.  In hindsight, I would have taken more time to recover.  I felt the need to prove to everyone how tough I am, and that the surgery was not a big deal. I really should have worried more about my recovery.  Six months later, one of my breasts is perfect.  The other is much better but feels restricted and tight, which is probably because of the prior lumpectomy and the build-up of scar tissue.  I feel fortunate to have been afforded the opportunity to be proactive in this experience and I would be happy to help anyone else in this situation.

  • ArleneMarie
    ArleneMarie Member Posts: 89
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    For some reason, I felt the need to check in since it has been four years since I went through my PBMX. I feel great, look great and am so glad that I did it. My question to all of you who have done this is have you had any check ups whatsoever? I haven't and I wondered if there is anything I need to do going forward. I live in a totally new city since I underwent the operations and would fly back to Philadelphia if I really felt that I needed follow up. Any thoughts on this?

    Arlene

  • horsemom
    horsemom Member Posts: 31
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    Arlenemarie

    I'm only 7 weeks out but my BS has already told my I'll be seeing her for manual exams every 6 months for a couple of years and at some time we'll go to yearly exams.


  • Mykidsmom
    Mykidsmom Member Posts: 448
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    ArleneMarie - I had my PBX and reconstruction in 2008/2009. The only thing I do now is go in once a year for my annual pap which includes a breast exam. Otherwise nothing. It's great, isn't it? Thought I would pitch in. - Jean

  • carol57
    carol57 Member Posts: 1,550
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    A one-time MRI to map fat necrosis (from diep recon) and get a general 'landscape' of both reconstructed breasts, and annual manualexams with well-woman checkup.

  • Carolinerene
    Carolinerene Member Posts: 1
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    Hi,

    I would love to connect with you. I am in the same position as you were when this all started for you. I visited your blog but didn't know how to contact you. You mentioned email perhaps?

    Please let me know if you would be willing to chat with me! Thank you.

    Caroline

  • ArleneMarie
    ArleneMarie Member Posts: 89
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    Caroline,

    I PM'ed you.

    Carol57,

    I had reconstruction with implants while my sister went the DIEP reconstruction. Just so I understand, you recommend the MRI for DIEP only, correct? It sounds like I just have to be aware, which is what I am doing, for any unusual lumps.

    Thanks ladies :) Merry Christmas.

    Arlene

  • carol57
    carol57 Member Posts: 1,550
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    Arlene Marie, the MRI was recommended by the oncologist I visited expressly to get an opinion on the nature of follow-up, if any, after my pbmx/diep. She did a 'breast' exam and found fat necrosis, which is not surprising after diep, and she recommended the one-time MRI to get a baseline image of that.

  • Fussykat08
    Fussykat08 Member Posts: 1
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    Wow! Finally someone who gets it! I have had 2 BS think the PBM is radical and unnecessary with LCIS. Everyone else, they think it is a no brainer! Take them off! It is great reading your posts. I. Considering the PBM. I have two young kids, a busy full time job, and a husband to think about.

  • carol57
    carol57 Member Posts: 1,550
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    Fussy, best wishes in your deliberations.  My family history of BC is extensive and I'd been waiting all my adult life for the diagnosis, so to me LCIS meant 'early warning signal' and the chance to intervene. My decision was instant.  Without the family history, no doubt I would have wrestled with the pbm idea. Good news is that you have plenty of time to research and think about it.  I'm no spring chicken, but I bounced back from the surgery and diep recon easily and quickly, so I suspect you'd take the surgery in stride. There is a lot to think about--ranging from body image to your husband's feelings about the 'new' you, and if you choose reconstruction, there's no shortage of choices to evaluate there, too.  I'm glad you found this forum.  The women here are giving, incredibly knowledgeable, and no one judges whatever decision anyone makes.

  • ArleneMarie
    ArleneMarie Member Posts: 89
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    Thanks ladies, for your insight on what to do afterwards. Love the input.

  • Swadjm
    Swadjm Member Posts: 1
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    Has anyone had a bilateral nipple sparing preventative mastectomy due to ALH and LCIS and then used estrogen patch later on due to hysterectomy?

  • ArleneMarie
    ArleneMarie Member Posts: 89
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    I did not do anything after my bilateral nipple sparing mastectomy. It’s been 8 years and I just exercise, eat right and carry on in life. I try not to take any drugs (even aspirin) and I stay away from soy and any estrogen based foods/ hormone therapy.

  • noraLCIStoILC
    noraLCIStoILC Member Posts: 6
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    My bio gives most of the details. I have no idea why I'm checking things out tonight, maybe it's meant to be.

    In February 2018, I had yet another recon on my right breast - extensive scar tissue (I knew it from the first recon, but took a while to convince doctors) - I took it really careful and easy until I was 6 months post-op for fear of recurring scarring - that's a long story if anyone is interested, it could be another thread.

    I had bilateral nipple sparing preventative mastectomy in May 2012 due to lumps, LCIS, and frustration with pain and anxiety.

    Pathology revealed that I had ILC Stage 1 (6mm tumor). Took tamoxifen for five years. Had the genetic testing for BRCA1 and BRCA 2 - negative (but that only means it wasn't those two). Had the genetic testing for Lynch Syndrome (not exactly right, but I can't remember the name now) - negative (history of colorectal cancer and uterine disease in my maternal family line). Had the testing to determine if continuing tamoxifen for an additional five years was beneficial for me - negative.

    In December 2015, I had both of my breast implants redone due to scarring and dissatisfaction. During the same anesthesia, I had a TVLAH (trans vaginal laparoscopic assisted hysterectomy) - I got to keep my right ovary - everything else is gone (most likely side effects to a previous heat ablation of my uterus and tamoxifen).

    Only now, in the last month, have I begun to be happier with my body and all of the influences of surgeries, medications, hormones (or lack thereof), and weight fluctuations.

    I'm glad that I had the preventative bilateral mastectomy - without it, I wouldn't have known that I had cancer at an early stage.

    I'm not glad that the uncertainties of reconstruction were not well explained or understood before PBM.

    I'm glad to be me... and that's a long journey.


    Looks like I need to edit my profile!!!

  • Gogi1
    Gogi1 Member Posts: 2
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    Hi< I was diagnosed with LCIS in 2018 I had an excisional biopsy with clean margins. In 2019, another biopsy turned out benign calcifications, again in 2020 stereotactic guide core needle biopsy for calcifications. My surgeon doesn't advise Tamoxifen, just surveillance. Do you have any advise on chemoprevention drugs?

  • alicebastable
    alicebastable Member Posts: 1,939
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    Gogi1, the last post previous to yours is from 2018. You'll need to start a new thread if you want people to see it and respond.


  • ArleneMarie
    ArleneMarie Member Posts: 89
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    Wow! It will be almost ten years since my bi-lateral mastectomy. I am doing absolutely fantastic and I hope all of you that made the choice to be pro-active are experiencing the same outcome. The only issue that I have is that I am now 56 going through menapause and I was told that I can’t use hormone patches. ugh. Anyone else have that problem? It’s the estrogen that I was told to stay away from because of breast cancer.

  • Gogi1
    Gogi1 Member Posts: 2
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    Thanks for letting me know.