LCIS and Prophylactic Mastectomy

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited March 2014

    cdehis

    Glad to hear your surgery went well. I remember sending you a PM last year regarding the surgery.  I bet you feel a huge weight has been lifted from your shoulders. 

    Best of luck

  • eileenj
    eileenj Member Posts: 64
    edited April 2014

    Hi Sandra! Thank you for your response.  Did you have nipple or skin sparring?  My oncologist said if I keep nipples and skin my risk is reduced to 5%.


     

  • eileenj
    eileenj Member Posts: 64
    edited April 2014

    cdehls, I recently found out I had a first cousin (mother's brother's daughter) who died of BC before age 50, and my mother has 2 first cousins who had BC and a 3rd cousin who had BC.  Mother's sister just went for an excisional biopsy and was told to come back in a year, so not sure what her pathology found but it wasnt high risk as far as I know

  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2014

    The only relatives that "count" are first degree relatives...mother or sister. A first degree relative increases your chance of developing breast cancer by a few percentage points. Well, you already have it in the lobules, so it doesn't matter that you have relatives with breast cancer. That ship has sailed. What does raise the risk of developing more cancer is the fact that you have LCIS. It is tied to developing another kind of breast cancer in your other breast. By itself it is slow growing and rarely leaves the lobules, so LCIS in itself isn't the main problem. It's the risk to the other side or recurrences. Only about 10%-25% of all the kinds of breast cancer is Invasive Lobular Carcinoma but that means that LCIS does become invasive in some cases, but it's likely it was there a long time before discovery. What is common is to be diagnosed with another kind of breast cancer in the other side, and then at bilateral mastectomy, the pathologist finds LCIS on what you thought was your "good" side. That was my situation.

    Because I had such large breasts, about 10 lbs was removed at the BMX. There was plenty of skin left to cover permanent implants. I couldn't keep my nipples because of my size but wouldn't have if I could. The oncologist said the nipples are part of the ductal system, so since I had DCIS too, it would raise the risk of recurrence of DCIS to leave ANY ductal tissue.

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited April 2014

    Sandra,

    I was told the same thing about nipple sparring PBM by my BS. She said just what you were told about the ductal system and after deciding to have a PBM why would I want to take a chance. Also with nipple sparring sometimes they don't take and have to be removed. No thanks. So, my PS made them and they came out great. I wouldn't have done it any differant.

  • leaf
    leaf Member Posts: 8,188
    edited April 2014

    They just updated the USPTF  BRCA testing guidelines in late 2013.  They include several different scoring tools, and _at least one_of them (the Ontario tool) does include 3rd degree relatives. 

    http://www.uspreventiveservicestaskforce.org/uspst...

    http://www.uspreventiveservicestaskforce.org/uspst...

    I didn't know this either until I talked to my general surgeon this spring (for another issue).

  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2014

    Good info Leaf. My oncologist said when determining whether or not to get the BRAC testing, it was only the 1st degree relatives that had an impact on the decision to have the test at all. Once you know you are positive, I'm sure the prevalence of other relatives makes a huge difference in deciding about prophylactic procedures.

    In my situation, for example, my mother's sister died of breast cancer, but neither my mother nor sister had it. The oncologist said the fact that my aunt had bc did not indicate a need for the BRCA test.

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited July 2014

    Time to bump this thread up for the new girls facing this decision. Please feel free to send me a PM if you want to chat about this.

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited August 2014

    At what point in the process did you decided to go with PM?

  • Ninany
    Ninany Member Posts: 55
    edited August 2014

    I had multiple biopsies over 6 years with abnormal results much of the time (including my very first mammo) and frankly was sick to death of very painful lengthy mammos and subsequent ultrasounds every 6 mos.  Especially since they always resulted in painful biopsies.  When they found ADH and the LCIS the last time, and after my genetic counselor gave me a 66% chance of developing BC, I pulled the plug.  The mastectomy was on April 9 and I'm having my exchange on Monday.  They didn't find anything worse than LCIS but there were other areas of concern besides my initial one.  I was able to keep my nipples and the reconstruction process is going pretty well.  Mostly, I am not worrying every six months and stressing out.  I feel like I'm getting my life back.  But it's a very personal choice.

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited August 2014

    jrsno1 fan

    I decided almost as soon as I was told I had LCIS and needed surgery for it. I could never do the six month waiting game because the six month in between I would have been a wreak mentally. As hard as this was to decide to have a PBM it to me was still easier then going thru the rest of my life having to be tested.

    But, that's just me not many people might feel that way. You have to respect everyone's choice.

    Nianary

    Glad to hear your done and on the mend. Best of luck to everyone.

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited August 2014

    I believe I have made the decision to do it. I, like you, cannot do this every 3 month testing thing (which is what my dr is recommending at this time). So far in the last 2 months I've had shingles and a lip full of fever blisters all from the stress of waiting for test results. I can't do it anymore. The last  MRI showed there is "moderate benign enhancement in the margins of the surgical seroma". She said they are benign this time but that doesn't mean they won't be benign next time. I don't want to wait for "next time". If I have to have 1 more surgery I want it to be the final surgery. I've already met my deductible for the year so I figure might as well do it now. I will wait to see the oncologist on the 22nd to see what she says but for now this is my decision.

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited August 2014

    jrsno1fan

    You poor thing the stress will kill you before the LCIS. That's how I felt 5 yrs ago. Believe me if you go thru with the PBM once you wake up you will feel a HUGE relief I know I did. The first 3 weeks were a little uncomfortable but, no real pain just a tight feeling the drains were the worst part. 

    When I went to the oncologist  she said to me "why would you want to have THAT surgery? You just take meds for 5 yrs and then be tested every 6 months for the rest of your life"

    No thanks.

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited September 2014

    I went to the oncologist and she agreed that PBM is my best choice at this time. Went back to the BS and she has agreed. I have my appt with the PS next Monday and my BS says it will all be done by the end of the month. I'm very small only 135 lbs and small B breasts so the BS said I will not be able to go direct to implants. Fortunately, I have extra skin on my tummy area so she said the flaps will probably come from there. I'm so scared. I know I have to stop reading all of the horror stories and remember for the 10 horrors there are hundreds of positives. Everyone is supportive but I have not told my job yet, wanna wait until I have a surgery date. I've not been there a year so I'm worried about the whole FMLA thing. Hopefully the county commissions will see that it wouldn't be good PR to fire a BC patient for having this surgery. Anyway, I'll cross that bridge when I get to it. 

  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    Hi ladies, I discovered my ILC in FEB when I noted a "dimple" while blow drying my hair. I had neoadjuvant chemo and had a BMX and ALND on Aug 7th. Got my path report, 10/11 lymph nodes all still with active cancer, chemo was not effective at all. The reason I popped in on this thread is that the right supposedly proph breast had LCIS which never showed up on MRI or CT, and the left one with all the cancer also had LCIS. My BS says LCIS was surely there for years, my ILC is grade 1 so very slow growing and never showed up on any mammograms that I've had yearly for the last 16 years. Wish I had caught it and removed it before it was "considered cancer." Whether you aggressively go after it with BMX or go for careful monitoring you know it's there, you're ahead of the game and so lucky to have caught it early. Good luck ladies and God bless.

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited September 2014

    Thank you genny5775. I read where someone said, "I don't want cancer to make my decision for me". So even if they say LCIS is not cancer I'm not waiting until it is. I believe I'm making the right choice for me and that's all that matters. Good luck with your recovery, I hope it's not a long one.

    Kim

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited September 2014

    jrsno1

    How you doing and when is your surgery?

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited September 2014

    Surgery is October 8th. PBM with expanders and AlloDerm. I was hoping for DIEP flap recon but doc says it's not possible because my skin is to thin. I'm super scared but I know I've made the right decision for me. 

  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    jrsno1fan, Surgery for me what not anywhere close to as bad as I expected. I was up and about the next day able to wash and sit up and do what I needed to do. Make sure you have a backscratcher, couldn't live without mine, had my DH bring it to the hospital and carried it around the house with me for quite awhile. I slept in a lazy boy for about 3 weeks, 6 weeks out now and I golfed 18 holes a couple of days ago. The expanders are a bit uncomfortable but not that bad either. Just hoping to ease your fears a bit. Good luck to you.

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited October 2014

    jrnso1fan

    Something you should p/u before your surgery is a wedge pillow. They sell them at bed bath and beyond. And some really thick pillows to put on top of the wedge pillow. This way you not getting up from a laying down position you can roll to the side. Your going to have a hard time using your arms at first trying to get up and this helps. It's much better then trying to sleep in a reclining chair.

    Best of luck to you 

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited October 2014

    Genny,

    So glad your ok. That's why I gad my surgery 5 yrs ago so I would have to deal with in the future.

    Thanks for your post!

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited October 2014

    Thank you Genny and Stonebrook. I have a recliner but I'm not sure yet where I'm going to sleep. Going to see how I feel when I get home. I had pre-op on Thursday and they took blood, I'm already broken out from the tape so I'm really worried about an adhesive allergy. 2 days. eek.

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited October 2014

    Today is the day. Headed into surgery at 0545. Thank you all for the support and unlimited knowledge. 

  • iammommy
    iammommy Member Posts: 213
    edited October 2014

    I hope your surgery went well and you are resting comfortably. 

  • jrsno1fan
    jrsno1fan Member Posts: 33
    edited October 2014

    Surgery went well. Was released the next day. Still have 4 drains and the ones in my armpits hurt the most. I did not do nipple sparing so that's one less thing to worry about. The incisions look good so far. No signs of infection. What I was surprised by was my surgical teams sense of humor. All of the team wrote notes on my chest, abdomen and arms wishing me good luck. It was all very precious. The happy juice is kicking in now. TTYL.

  • Guineagirl
    Guineagirl Member Posts: 5
    edited October 2014

    Hello,

    Just spent the last few hours reading through this thread and I must say say it is nice to see some of you have remained on long after your surgery.   What a great support system!

    I was diagnosed with LCIS this past summer in my right breast after a stereotactic biopsy.  Nothing is showing on the MRI on the left side but we all know that doesn't mean anything.   I have decided to go with the BMX since my mother died of bc as well as two sisters. My third passed from lung cancer.   Additionally, I had chest radiation as a child due to Hodgkin's disease.  So having the BMX for me is a no-brainer.

    My dilemma is, I'm an American living in Switzerland with my husband and four children.  I am fortunate enough to be living in an area of Switzerland where one of the pioneers of the DIEP flap practices.   He is a very talented PS surgeon and I feel quite confident he will give me two great-looking boobs as well as a flat tummy.   He has advised me he can do both the mastectomy and reconstruction but he wouldn't be doing a sentinel node biopsy.  I am reluctant not to have the snb based on my history. I am also petrified of them having to go back in if pathology report says there is cancer and nodes need to be taken.    Then lymphadema is pretty much a sure thing which I am more afraid of than the BMX.  

    I met with a breast surgeon and plastic surgeon while in NY this past week (dr. Marie Chen and Dr. Ron Israeli)  and loved them both.   Dr. Chen said a sentinel biopsy would be done.   Both NY doctors had nothing but great things to say about the PS in Switzerland which is making my decision on where to have the BMX done a difficult one.  I would like to have it in Switzerland to be with my husband and four children but part of me wants to do it in US (my comfort zone).   I was advised I would not be able to fly for eight weeks after surgery so that puts me away from my family for quite some time.   My children are aged 5-16. 

    Basically, I would like to know what everyone's recovery was like.   How many of you had sentinel node biopsies?  Do any of you suffer from lymphadema from it?

    Sorry this is so long but  I needed to share with people who understand!

    LeeAnn

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Guineagirl---I'm curious regarding the "no flying for 8 weeks".  Women from all over the US fly to and from NOLA (the breast center in New Orleans) to have the DIEP procedure done, and go home usually about a week later. (if I'm incorrect, I hope someone who knows from personal experience will correct me).  Also, I've read here recently, there is a new procedure that can be done after bilat masts to check for the sentinel node. (if invasive bc is found).  So, if no invasive bc is found,  then you will have saved yourself  from having to undergo unecessary node removal. therefore decreasing the risk of lymphedema. You may want to question your surgeons and ask about the flying restrictions and this new sentinal node procedure.

    Anne

  • carol57
    carol57 Member Posts: 3,567
    edited October 2014

    LeeAnn, I think that recovery is often easier when the surgery is prophy, because we haven't had to put our bodies through chemo, rads, etc. After my bilateral prophy mx/diep, I was feeling human after two weeks, pretty darn normal after four, and back to pre-surgical routines and exercise (light exercise initially) at six weeks. You might invest some time perusing the reconstruction threads that discuss diep, and you'll find lots of shared experiences that may give you some perspectives on recovery times and experience. As Anne said, many women travel for their diep recons, so you will find many comments about the post-surgical travel, including preparations for it.  Good luck with your decision!  Lots of pros and cons to wrestle with!

    Carol

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2014

    Guineagirl - The Pink Lotus Breast Center did a prophylactic dye injection for Angelina Jolie. No nodes were taken at her mx.  If invasive cancer was found they would have been able to go back in and get the sentinel node. I have not heard of any other docs doing it, but it seems like a good idea to me.  For some reason my link won't paste correctly but do a search for PBDI prophylactic breast dye injection and Pink Lotus Breast Center and you should be able to find it. 

  • Guineagirl
    Guineagirl Member Posts: 5
    edited October 2014

    Thank you all for your responses.  I think they don't want me flying is because it's an eight-hour flight but I will check again with the surgeons in the US.   As far as surgeons in Europe, they tend to be more conservative.   I'm so glad to hear you were feeling a lot like your old self, Carol, two weeks later.  I'm hoping for same.  

    Farmerlucy, I put a call in to the PS here in Switzerland inquiring about what Angelina Jolie had done regarding sentinel node.  Hopefully, it will be a viable option.  

    Good luck and good health!!

    LeeAnn

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