LCIS and Prophylactic Mastectomy

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%.

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.

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).

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.

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.

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. 

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

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. 

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.

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

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

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

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