Surveillance for me? Yeah, Right, Sure.

leaf

Sounds like you are making an excellent choice.  BMX is certainly the most definitive treatment we have, and that sounds like you will have lifetime relief from anxiety.  You will have plenty of friends on the other side cheering you on!

auntiems3

Thanks everyone. the biopsy was easy, but we are still waiting for results. Doc says it didn't look like fibroadenoma. But still confidant it's benign. Maybe tomorrow.

auntiems3

Hi-

We got the biopsy results this afternoon.  No malignancy....whew...but more ALH.  This is the contralateral breast, so we are so happy and more confidant than ever that we are headed in the right direction.  34 days and counting down.

My sixteen year old was so funny.  I got the call during the middle of a family college counseling meeting (me, dh, daughter and counselors).  I ran outside to take the call, no one blinked.  When the meeting was over I said to my family.  "Good NEWS!  The biopsy was not malignant, but it wasn't exactly benign."  She looked at me squinted and said,"So, how could it NOT be exactly benign.....ifffffff it's not malignant?"  She is so smart!

Thanks for all your thoughts and prayers!

Marie

auntiems3

So,  I was relaxing Friday evening, eating my leftover pizza and the phone rang.  It was my bs calling me.  She said she got the pathology on this last biopsy and wanted to schedule an excisional biopsy to clear the margins....there were several foci of ALH.  I mentioned that we were so close to the PBMX date of May 15th and did she really want to do the biopsy?  She said no, but that she will do a sentinal node to clear me of any possible infiltrating cancer.

I keep trying to be positive, but this feels like it keeps getting worse day by day.  Of course, she did say that the chances were really slim, but in retrospect, the radiologist told me twice that she felt it would be benign.  I think it is just that little bitty chance of having something go wrong that makes LCIS and ALH really shitty to deal with.

33 days and counting....

Anonymous

yes, I also had sclerosing adenosis found with my LCIS (I think it's very common); the way it was explained to me by my docs is that the LCIS "trumps" anything else I had, and the risks of the other "stuff" found is not added all together on top of each other.

 Best wishes for a smooth surgery and recovery, praying that this new finding is nothing serious and you can move forward with your plans.

anne

beacon800

Congrats on your biopsy results!  Your 16yo is right - it is benign.  Not the best benign, but still...  ALH is a lesser dx than the LCIS you already have.  LCIS is where it fills the lobule and ALH is where it only partially fills the lobule.  "Foci" of ALH - not a big deal, IMO.  That means it's very small.

Are you doing sentinel on both arms for your bmx?  I did no sentinel as we had done such a terribly complete workup.  Of course sometimes there is hidden invasive, but I took the gamble and it paid off.  Something to consider.

auntiems3

Thanks Beacon and Anne,

To be honest, it wasn't the ALH that scared me...it was the phrase "clear the margins".  Why would you need to clear the margins on something benign unless you were looking for something lurking.  I think we are only doing sentinal node on the right.  The radiologist placed a clip in the space where she did the core biopsy.  The left breast where LCIS was found I had 3 excisionals done, so there isn't anything there to help locate the original LCIS.  I have to call on Monday and ask them to send the report and while I do I will ask more questions.  I was too surprised by the call in the first place and my brain froze.

Marie

leaf

Maybe someone was confusing LCIS and DCIS?  If I understand things right, it is pretty much 'standard of care' to get clean margins with DCIS.  Some posters here have said their docs were recommending radiation for their LCIS, which I have only found reports in France, so I wonder if everyone understands that LCIS is not the same as DCIS.  When I've made appointments, and they ask my diagnosis, and I say LCIS, I've had some of them ask, "Do you mean DCIS?" I hope your docs aren't getting confused.

If you have PLCIS, then I've seen papers that recommend treating PLCIS like DCIS, so that may be a possibility too.  

It may also be a matter of terminology.  Some docs classify both LCIS and DCIS as 'benign' conditions (though I think that happens much more often with LCIS.) 

I sure support your ideas to get the report sent to you and ask questions.  As I'm sure you know, you want to have as few surprises as you can after surgery.  Let us know what they say, OK?

auntiems3

Well Ladies, 

Tomorrow is the day.  We are spending tonight at a hotel 2 blocks from Penn Hospital and check in tomorrow sometime.  I still don't know my surgery time.

The dogs are being farmed out to various relatives along with my now 17 year old (her birthday was yesterday).  She has exams coming up soon and since our hospital stay is so brief, I want her to concentrate on finishing up the school year strong.  We have asked our kids not to come to Phila and sit around while i am in surgery  (BORING AS ALL GET OUT), but my 33 year old won't listen so she took the day off and is coming to sit and wait.

I will be excited to get home by friday since my daughter's prom is saturday and I don't want to miss seeing her.  Her older sister's will be coordinating the prelude!  I can't wait to see this!

Emotionally I feel really strong going into this, I have no flutters or anxiety, I am not running in circles trying to remember everything.  I am letting my DH do that.  He was excited to read the news today that Angelina Jolie had a PBMX recently. (true or not?) He sometimes needs to feel validated.

I bought a beautiful (way Post-op) bra and panty set for the final unveil later this summer.  I placed it on his vanity and told him the plan.  I bought two bra sizes, 36C and 38D.  I am slightly too big for a 36C (I think it's the 36 part that is too tight) and slightly too small for the D  cup.  His fear is that I will want to go "TOO BIG". But I have always found myself hard to fit.

Anyway, the plan is for us to find a happy "fit" and when we both find that, we will go for the final exchange and I get to wear the new "set"!

I want to thank you all for seeing me through the rough parts of this journey and for guiding and supporting me with your strength and hope!

I will keep in touch as soon as possible,

Marie

ED2012

Marie - wishing you all the best tomorrow and praying for your careproviders as they perform your surgery.  Sounds like you have everything in order and a great attitude to boot!  Will look forward to hearing how you are doing on the other side and sending you big cyber ((((HUGS))))!

leaf

It sounds like you have done everything possible for a great outcome.  Yes, the news is that Angelina Jolie had BMX for BRCA.  You are not alone! You have made a great choice, and are doing everything to put this diagnosis behind you and get on with your life.

Let us know how it goes!

SimplyAudrey

Happy 1 year anniversary to me!  I had my excision biopsy 1 year ago tomorrow which is when my LCIS is discovered.  How much happens in 12 months time!

Found out yesterday I'm going for one more fat graft in 4 months to finish off the left upper pole.  There was some fat attrition (common).  Sometimes it doesn't pay to be relatively skinny. 

Otherwise, all is well, and if I was facing this all over again I wouldn't do it any other way.

Happy Memorial (or is it Mammorial?) Day to all!

A

leaf

Congratulations on a great decision, Audrey!   I'm so glad you started this thread for the people who make this choice. Happy anniversary! 

auntiems3

Congratulations Audrey,

A year goes by fast.  Next year I will be celebrating too!.  We had our one week appointment Wednesday and no drains out yet.  The nurse practitioner says my output means I am doing too much.  Well I haven't lifted a finger to housework but there is a lot of moving around to do all day.  Oh well, the left looks better that the right.

She did however give me a 60cc fill already to expand the creases forming under the nipple areas and Palmer's cocoa butter to massage around.  Seems to be working.  She mentioned she might do one small fill next week again.  The fills didn't bother me at all, but i guess these were just test runs!

Other than scheduling showers around my DH schedule and not having my hair combed for days, I look pretty sportin" !

Marie

SimplyAudrey

Marie,

So sorry you're still with drains, but slow and steady wins.....my PS kept telling me "baby steps Audrey, remember, baby steps!"

We want it all and we want it now - patience is an ART!

It SOUNDS like you're feeling pretty good despite them?

Here's hoping they come out SOON!  I remember what a relief that was!

auntiems3

Well, my drains are both out since Memorial day....I have had 3 small fills on each so we are up to 150 cc's.  On Monday to travel to Ardmore ( and the US Open better be over by then)  for a lymphatic massage and a 100 CC fill for each.

I have to say, I am a little scared. I have been doing the exercises pretty well, I can almost reach to my arm length limit on a wall, and the over head strretches aren't that hard, but i still feel stiff and tight.  Is this normal?  I feel like somebody put in those cardboard forms to prevent  new shoes from losing their form.

The right drain hole had a hard time closing and had some weird tissue protruding through it so it would not closed, but I fixed that with New-Skin!

I also still have some creases but I am rubbing in cocoa butter cream and pulling on them every day.  I have gone through half a jar already.  

I have had 2 emotional crashes that I blame on the anesthesia and one from having DH not understand how to be more emotionally supportive.....like when I see dust bunnies rolling around the floor that I know I am not allowed to clean. Or lift our 3 yr old granddaughter.

Tell me all this is normal and I will take it for what it is!