What was your first step after LCIS diagnosis?

shabby6485

Hi to all~

LCIS diagnosis via excisional last week.  Just curious what your next step was after being diagnosed.  Most interested in the steps and  process towards  mastectomy...

 For those of you who had a pmx...how long between diagnosis and surgery?

Thanks!!!! 

Cats134

Hi Shabby,

After multiple biopsies, where LCIS was found it seemed everywhere in both breasts, and after lengthy discussions with my family and my breast surgeon, scheduling my bilateral mastectomy was the next logical step.

I met with my  BS who walked me thru the procedure. Even thou I was sure I didn't want reconstruction, I met with a PS to discuss options.  I read EVERYTHING lol.  Met with my primary doctor to get pre-surgical tests out of the way.

Prepared a shopping list (there's a great list on the board of items to take with you to the hospital or needed at home), told other family/friends, and mentally/emotionally tried to prepare myself.

It's almost 3 months since my mastectomy and I'm happy to say I'm doing great!  Recovery was a little longer/harder than I expected it to be (I think my expectations were out of whack) but there are days now where I forget I had surgery for a bit.

Best of luck to you and feel free to PM me if you have questions.

hugs,

Cats 

KellyMaryland

One of the best things I did was meet with a medical social worker.  She helped me sort through the many competing feelings I had at the time.  Even if you are clear in your decision to move forward with surgery (I was as well), I highly recommend this.  Best of luck, Kelly

JanetM

I have chosen to go the every 6 month close monitoring route for now.  My BS offered Tamoxifen but I have chosen not to start that either.  I am considering PBMX but will wait until I go back in June for my mammo and ultrasound and appointment with my BS to make any decisions.  With LCIS, ALH and ADH I feel like I am just waiting for the other shoe to drop.  I don't think that there are any right or wrong choices with the dx, it is whatever is right for you.

leaf

My step after my excision was to see the genetics counselor because my paternal grandmother had both breasts removed after breast cancer, and had only sons.  It ends up that when she got breast cancer (in the early 1950s) chemo was not a routine treatment; bilateral radical mastectomy was the usual route.  She also was post-menopausal at the time, so her case was likely one of the 'sporatic' cases.  The genetics counselor said my risk of having a BRCA mutation was about as much as the *average* Ashkenazi woman.

Anonymous

my next step (after my lumpectomy confirmed my diagnosis of LCIS)  was to see an oncologist a few weeks later.  I started on tamoxifen a few weeks after that.

Anne 

ppeople

Hi, my next step, after wide excision, was to be sooo grateful that it is only LCIS. Then I researched options and I juust knew mx was right for me. All options seem logical, so I understand someone picking any of them, but for me waiting for tests or taking a drug both seemed more stressful than a one time deal. Granted that one time (mx) is a big deal! Where are you in the process?

ppeople

Oh, I should that while I talk big, I haven't actuallly had the mx yet! LOL! We'll see in April when I have the surgery what my story is then.

shabby6485

Hi Plymouthpeople, Not far. I am in process of setting up consults.  Leaning toward nipple sparing.  What type are you doing?

Thanks you everyone for your input....

ppeople

Nipple sparing.  Seems safe and will look good, not that they look so great now being 51 years and 4 years breast feeding kids old!  Also, lumpectomy ate up 25% of right boob, so new ones are in order.  But, seriously, it just seems like this is a way to pay once, pay up front and be done.

shabby6485

Hi Plymouth, Are you doing immediate implants or te? 

ppeople

Hi Shabby, TE. PS says direct implants give less good rsult, although I have heard others disagree. I don't know so just taking his word

iammommy

Had my pbmx 3 weeks after diagnosis of lcis. No reconstruction. Happy with my decision. Nam

1Braveheart

Hi Shabby - I was diagnsoed with LCIS in early November 2011 by an excisional biopsy. My BS then did an MRI to see if there was any other cancer visible elsewhere in my breasts. (looking for other cancers as LCIS doesn't show up on an MRI). I met with an oncologist (out of Johns Hopkins) who was just wonderful. I was very surprised she started asking me if any of my 1st, 2nd, or 3rd degree relatives had any of the following cancers: prostrate (2 uncles died from it), breast cancer (1 cousin who was diagnsoed with it in her 30's and died at the age of 70 rom endometrial cancer -my oncologist said my cousin's double diagnosis was a big red flag), endometrial cancer (my cousin I just spoke of and my paternal grandmother both died from this cancer, colon cancer (my father, one sister and I have had "precancer" of the colon - not as big an issue.  Ovarian cancer is a big one also but I had no relatives with this cancer. All of these relatives were biologically related to my paternal grandmother - hence all from the same "gene pool". My oncologist said these are all cancers that can be triggered by the BRCA 1 and 2 genes. She suggested I get the BRCA 1 and 2 test. She took some of my blood, sent it to Myriad Genetics and at that point they tell you if your insurance covers it (oddly, not at the doctors office). Myriad Genetics is the only company/lab that does this specific test. They were actually awarded a patent on it last fall - a highly unusual situation. Myriad told me my insurance company Blue Cross Blue Shield Federal Employee Program would not cover it because it was not DCIS or an invasive cancer. I asked how much it would cost for me to pay for the test out of pocket and they said $3,500 - too much for me. I spoke with my oncologist and BS a final time and they both suggested I get the bilateral mastectomy due to the types of cancer I just noted in my family - all in the same gene pool - family line. I had it December 5th 2011 and haven't looked back since. I'm not planning on getting reconstruction. I wish you the best of luck in your decision and that whatever it is you feel comfortable with it. I just didn't want the worry every 6 months that invasive cancer would show up.