lopalermo

Hi Sunflower,

Thank you for your prayers.  I had my prophylactic double mastectomy Nov. 18.  I couldn't believe they wanted me out of the hospitol 24 hrs. after surgery but I told them I was not leaving until my pain was under control.  Part of the problem stemmed from not knowing that I could push the pain pump button every 10 mins and then when it finally sunk in to do it and that I could- then I either couldn't reach it or I couldn't find it.  Good news was I left the 2nd day and finally had the pain under control with vicodin and an IV bag of motirn.  I've been good since I left the hospitol.  Got two drains out this morning and still have 2 more left in.  They should come out next week.  What an awesome God we have and boy have I sure been blessed by Him- even after reading everything on the internet and seeing numerous doctors who thought that maybe my idea of a prophylactic mastectomy was a little agressive but an option regarding my diagnosis of LCIS I still felt lead to have it done.  God had given me many confirmations to go ahead on my deicison but the question is always still on your mind but today I KNOW I made the right decision.  The surgeon said my whole pathology report was not in yet but I had made the right decision especially after they found some DCIS in the pathology too!  Thank you Lord for giving me the courage to stay on course- I have been blessed- no radiation- no chemo.  Of course, I do know the decision I made is not for everyone by any means.  The many women who are diagnosed with LCIS and never have any more problems are tremendously blesssed.  I love seeing their stories because it's nice to know there are other options and not everyone is the same.

So Sunflower- how are you doing? What phase are you in for reconstruction?  I may have my first expansion fill delayed a week since they also did the nipple sparing technique on me and they want to make sure the nipples will be ok first.  I'm excited and positive about the outcome and have definitely learned that God is in control- not me.

Have a great Thanksgiving-

Lois

Carol,

Your words are like a breath of fresh air.  Thanks for the positive input and the heads up on the on-Q irrigation.  I will definitely be asking about that!

Lois 

Sunflower,

We will have to keep up with each other.  I have surgery for BPM Nov. 18.  I'll be praying for you.

Lois

Jean- I'm glad I'm not the only thinking the was I do.  Thanks for your comments.

Chrisly1- Sorry your having to think about this too but it will great to have someone going through the same thing at the same time.  We can hopefully help each other through it.  After meeting with the surgeon and plastic surgeon they left me with two decisions I have to make before surgery- 1) do I want the sentinel nodes taken out at the time of surgery 2) do I want to try the nipple/skin sparing technique.  Right now I'm thinking yes take the sentinel nodes- I don't think they can go back and take those particular nodes after the surgery (I'll have to ask about that because if they don't take them and then find something in the pathology how do they decide which nodes and how many nodes they are going to go back and take to biopsy? I am also pretty sure I will have them try the nipple/skin sparing technique- if it doesn't work then we can go back and do it the other way.  Tram/flap would have been nice but I hear it is pretty painful and I didn't have enough fat to make them the same size they are now.  Also, I hear there is a technique that doesn't take any of the stomach muscle just the fat which doesn't leave your stomach muscles weaker with possibility of hernias.  Please let me know how you are doing and what your thinking.

Lois

Hi Noel & Phyllis,

I can't thank you enough for your input.  I think I will try the nipple sparing and have the sentinel nodes taken out.  If you think of anything else let me know.

Lois

Hi Nicole,

I'm facing the decision on whether to having nipple/skin sparing or not.  The surgeon wants to do it but the plastic surgeon said the scar tissue may pull the nipples is different ways.  I think I'm willing to take the chance.  They do want me to go into one of their research studies about the loss of feeling in the nipples. I wondered if there were people who actually got the feeling back- guess you're living proof of that.  What type of implant did you get? I'm doing some research on those.  I think I want the gel but I keep reading about gummy bear implants, silhouette implants and etc.  I also have to decide if I want them to take any sintinel nodes. 

Lois

Has anyone had reconstruction with the nipple sparing and skin sparing technique?  Also, has anyone had the silhouette implants for reconstruction?  What were your experiences with them?

Lois

Hi Everyone,

I went to MD Anderson last week and met with genetics counselor, their psychiatrist, oncologist surgeon and one of their plastic surgeons.  I'm scheduled for PBM mid November.  I will probably do the nipple and skin sparing PBM with immediate start of implant reconstruction. I'm not looking forward to it but I feel really great about my decision.  No offense to men but I'm glad I have really wonderful female doctors.  I'm starting to feel safe again having made the decision to do PBM after the rug was pulled out from under me back in Jan. 08.  Since my mother died from breast cancer when she was 56 I felt like yearly mammograms were all encompassing.  After having a good mammogram and being told I wasn't needed back for another year I decided to just do a breast MRI (after a younger sister was diagnosed with ovarian cancer) 5 mos after the July mammogram.  All those years I thought I was safe only to find out by a chance MRI that I had four different cells that could lead to four different kinds of breast cancer- what a SHOCK.  Make no mistake I have blessed by the grace of God that they are all still contained and I only have to do PBM.  I thank God I do not have to do that and radiation and chemotherapy.  Sorry I went on and on.

Hope- you go girl! Maybe your husband can help decide how big you go when you do reconstruction haha!

Lois

Hi Anne,

My ins. company paid for BRCA testing (came out negative) and breast MRI which lead to a lumpectomy showing two areas of atypical intraductal hyperplasia, papillomatosis and LCIS.  Interstingly enough I had just had a mammogram 5 mos. prior to the breast MRI and it showed absolutely nothing!!!!!!!!  I actually recieved a letter from the breast clinic saying I didn't need to return for another year.  The Dr. and I only decided to do the BRCA testing and breast MRI because I had a mother that died of breast cancer at the age of 56 and a younger sister being diagnosed with ovarian cancer last year. Even though it is scary to find out I'd rather find out things early and be preventive minded hince I am 95% sure I will do the prophylactic bilateral mastectomy by the end of the year with reconstructive surgery.  If finding out I have a mutant gene helps other family members and science technology I'm all for it.

What have you done with the LCIS?

Lois

Lucky,

What did your plastic surgeon say?

Lois