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Topic: LCIS blog- preventative bi-lateral mastectomy

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Nov 30, 2010 04:33PM

ArleneMarie wrote:

Hello to anyone,

I started a blog to chronicle my journey from being diagnosed with LCIS and my upcoming preventative bi-lateral mastectomy if anyone is interested in following along with me.  It helps for me to write about this process and I may be in a position to answer any questions you may have if you are considering this option.  Everyone has different opinions on what road to take.  This is my personal journey.  Please feel free to comment or email me and I will be straight forward with you.  My blog is at:

www.arleneflick.blogspot.com

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Sep 6, 2013 11:31AM ArleneMarie wrote:

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

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Sep 12, 2013 10:57AM Pattyp121 wrote:

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.

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Dec 21, 2014 10:17PM ArleneMarie wrote:

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

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Dec 21, 2014 10:27PM horsemom wrote:

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.


LCIS with strong family history at diagnosis. Extensive LCIS and small DCIS found at surgery. Dx 7/14/2014, LCIS, Stage 0 Surgery 10/27/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/4/2015 Reconstruction (left); Reconstruction (right)
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Dec 22, 2014 07:22AM Mykidsmom wrote:

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

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Dec 23, 2014 05:27PM carol57 wrote:

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.

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Dec 24, 2014 11:01AM - edited Dec 24, 2014 11:08AM by Carolinerene

This Post was deleted by Carolinerene.
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Dec 24, 2014 11:08AM ArleneMarie wrote:

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

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Dec 24, 2014 09:21PM carol57 wrote:

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.

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Dec 28, 2014 11:30PM Fussykat08 wrote:

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.

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Dec 29, 2014 10:05PM carol57 wrote:

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.

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Jan 18, 2015 01:13PM ArleneMarie wrote:

Thanks ladies, for your insight on what to do afterwards. Love the input.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Oct 10, 2018 09:32PM Swadjm wrote:

Has anyone had a bilateral nipple sparing preventative mastectomy due to ALH and LCIS and then used estrogen patch later on due to hysterectomy?

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Oct 10, 2018 09:54PM ArleneMarie wrote:

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.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)

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