LCIS Diagnosis

Megt

I was diagnosed with LCIS after a breast reduction taking me from a 44M (yes M) to a 44DD In Nov 2012. I have very little history of family members with breast cancer. Im 57 years old and I know my grandmothers did not have mammograms. I have had to have a complete hysterectomy due to several fibroid cysts. I have had a polyp removed from my vocal chord which came back clear.  I was given 3 choices. Watch & wait with 6 month check ups. Tamoxin OR Masectomy. Not a day has gone by were I haven't thought "what if".  I suffer with & am treated for Anxiety. I have chosen after several discussions & re search to have a mastectomy.  I read alot of these topics and see most are taking the Medication and or closely monitoring individual diagnosis. Has anyone out there chosen the mastectomy way or am I taking an elephant gun on a mosquito hunt. 

cheryl_e

I chose it because of my family history, history of biopsies, and multitudes of suspicious lesions on mammogram and MRI. After watching my mother die of BC at such a young age, I can only speak from my point of view and tell you I think you are making a wise decision and that only YOU can decide for YOU. I feel such relief and am happy with my reconstruction if you so choose that route. God bless!!

Megt

Thank you so much

auntiems3

Hi Megt-My decision to journey forth through PBMX came after 6 years of close surveillance .  My first 3 biopsies in the left showed LCIS and the 4th on the right was clear.  I don't have a strong family history (my paternal GM had a mastectomy in her 50's and survived), but my husband's first wife died after 7 years with bc.  So, the two of us have been together sharing the same anxiety for 6 of the almost 8 years we have been married.

On Monday I will be having my 5th biopsy and I now know that I have made the right decision for us.  The boobs come off May 15th.  I am hoping for one more clear report so I can proceed with an immediate recon.

The right decision is the one you make for yourself, along with your doctor and your family. 

I am sending thoughts and prayers to you.

marie

Megt

To you cheryl & Marie. I want to say Thank you & Also my prayers to both of you. I have no other women in my family who I can talk to. Friends are great and truly mean the best. However  I slept last night after both of your kind words then I have in along time. Can eather of you recommend a discussuion board or group where I can learn more on what to expect. Also is LCIS a hereditary diagnosis ? The Dr's I have chosen are doing immediate reconstruction, My Dr's office is calling me in the morning to give me my surgery date. I have also noticed I have alot of code words..  I think Im learning a few. PBMX = Post breast mastectomy?  Meg 

MelissaDallas

PBMX means prophylactic bilateral mastectomy.

leaf

LCIS is a rather unusual condition, so we don't know that much about it.  Since we usually don't know what causes breast cancer, we usually don't know what causes LCIS.  If you have a single genetic gene mutation (such as BRCA), and if you have LCIS, then to the degree that a BRCA mutation causes breast cancer, you could say that LCIS is hereditary.  But only about 15% of breast cancers are thought to be genetically linked.  About 70% of women who get breast cancer have no obvious cause of breast cancer (besides being a woman.)  Deleterious BRCA mutations are associated with a much higher chance of all types of breast cancer, not solely LCIS.  In addition, there are men and women with a deleterious BRCA mutation who do NOT ever get breast cancer. 

I don't know of any other group who has this number of people with LCIS.  (But just because I don't know of any doesn't mean there aren't any.) One paper from decades ago estimated the incidence of LCIS in the general population as about 1:10,000. (This is by nature a rough estimation, because normally LCIS is found only in women who have a breast biopsy.  We don't know how many women are walking around with LCIS and don't know it.)

Whatever way you choose of handling your LCIS diagnosis, you will have comrades here who have also chosen your path.

auntiems3

Meg, one of our members has a blog about her experience. I learned so much about the process from this wonderful resource. Go to arleneflickblogspot bye bye boobies. Also there are special discussions here about pbmx surgery and what to pack. Some really innovative ideas about what is absolutely necessary for the hospital. Let us know when you get your date.



Marie

Stonebrook108

Meg,

I had LCIS four years ago and knew I couldn't take the close surveillance every 6 months for the rest of my life. Also I didn't want to be on any meds. So I made the decision to have a PBM with direct implants and have NEVER regreted my choice. Before my surgery everyday I was consumed by thoughts worry and of what if I don't have surgery. After the surgery there is a calmimg feeling of knowing I got it before it got me. There are days I never think about what happened to me because I had the surgery.

The surgery isn't as bad as you think. There really is no pain just a sore tight feeling. The worst part are the drains. I had started a thread called "prophylactic bilateral mastectomy for LCIS" type it in under seach with my name Stonebrook108 and it should come up. So many wonderful ladies answers my questions and helped me out on that thread.

Feel free to send me a private message if you have any questions. Good luck in what ever you decide.

shabby6485

Hi Meg,

I had a pbmx in aug for LCIS.  I had a history of 10 biopsies in 5 years.  After the LCIS, I was ready to proceed with surgery.  It was an interesting process.  Looking back it went quick and I love the feeling of never needing another mammo again.  So liberating for me.  Of course, reconstruction has it down sides but no choice will ever be perfect.  I would do it again in a heartbeat.  Please feel free to inbox me if you have any questions.  By the way, I suffer from GAD and this put the fear of breast cancer to rest once and for all...

PuzzleMom5

Hi Everyone!

I'm new to this forum. I'm 41, and had my first screening mammo on 2/28.  From there I was called back for diagnostic mammos and bilateral ultrasounds, which led me to core needle biopsies on 3/8 and bilateral wire localization excisional biopsies on 4/16.  I'm so stressed at this point, and can't imagine going through this over and over again, emotionally.  I have no family history.  On core needle biopsy they found  extensive LCIS with pagetoid spread and microcalcifications on the left.  On the right, I have  ALH, and Flat Epithelial Atypia within a complex fibroadenoma.  The lumpectomies showed the same, with the addition of ADH on the right.  When the Nurse Practioner called me yesterday with results, she said although results are "negative" the breast surgeon may want to do more surgery and remove more tissue on the left?! This of course, makes me think they suspect there's more, maybe due to the pattern oif the microcalcs or something? I'm being seen at a well known breast clinic/cancer hospital. I go for follow-up with BS on the 29th.  I'm scared of Tamoxifen due to having inflammatory arthritis, but she told me this would be discussed after surgery.  I am seriously thinking about asking about PBM.  I just can't imagine having to go through this again and again, although there's no way of predicting.  Any advice?  Am I being too radical in my thinking?  Just need some advice from anyone who has been through a similar situation.  

PS.  Has anyone had a clip/marker lost during lumpectomy??  They couldn't find one of mine during surgery, although it was there during wire loc!

Thanks so much!!

Beckie

MelissaDallas

Puzzlemom, I felt very like you do 1 1/2 years ago, but I have since settled down a lot.



I'm just doing alternating mammos & MRIs every six months. If it does turn out it is no more than LCIS there are lots of women who don't end up having constant biopsies or problems.



My adice is to get through this & then take some time & see how it goes before you make any big decisions. You have plenty of time to think things over when you are less stressed from all the procedures & tests. My last mammo & MRI were fine. Try to remember that many women who never had any more problems have moved on with their lives & aren't still hanging around here. If I start having to have frequent biopsies I may change my mind, but for now I am okay with just keeping an eye on things.

PuzzleMom5

Thanks Melissa.  Glad you are doing well after goin through a rough time too!! I will see what the surgeon says on the 29th...hopefully not another round of surgery.  Wasn't quite clear on why I may need more, but hopefully the NP was wrong. If so, we will go from there.  Would love to fast foward a couple of months!  Thanks for helping me feel better

Beckie

Anonymous

Puzzlemom---I agree with Melissa, wait and see, no decisions have to be made right now. I was diagnosed with LCIS almost 10 years ago and my risk is further elevated by family history (mom had ILC and is a 25 year survivor!). I had a lumpectomy, took tamoxifen for 5 years; now I continue with alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, and now I take evista since I'm post menopausal. I have never had to undergo another biopsy or lumpectomy in all these years. My MRIs and mammos continue to come back clear. But if I had to have another lumpectomy/biopsy, I would definitely revisit the BPM option.

Anne

PuzzleMom5

Hi Anne....thanks for responding!  I spoke with the nurse practitioner today, and she still doesn't know if my surgeon has decided on more surgery or not.  Just so confused as to why? There are so many differing studies out there regarding LCIS and whether you need to "get it all" or not.  I got a copy of my path reports and aside from the pagetoid spread into ducts, the lumpectomy also showed flat epithelial atypia, apocrine metaplasia, sclerosing adenosis, microcalcs, and ADH near or within the LCIS. Same on right breast, minus the LCIS, but with ALH. With all of these markers, I am nervous that they think there is more hiding and they just haven't excised enough of it.  Crazy, I know....my mind is workin OT!!  I have deciden that when I go in for follow-up on Monday, I'm going to ask for genetic testing. My Mom, and both grandmothers died before age 55 of other things...who knows if they would have developed breast cancer?  They are going to offer Tamoxifen, as we have discussed this before, and I'm going to probably TRY it.  Nervous due to autoimmune issues/arthritis.  If BRCA positive, I will seriously consider PBM's. Does anyone know how long BRCA testing takes to come back?  If I have another surgery, it is prob 6 weeks out, due to huge hematoma from lumpectomy.  Just so relieved they won't have to do the wire localization again....that was awful! Thanks for listening!    

Anonymous

Puzzlemom,

 I had everything you mentioned on your path report (and some you didn't), with the exception of the ADH. I would assume if they plan to excise any more tissue, it is probably the area of ADH (if they didn't get it before, just to be sure there is no DCIS hiding); it would not be to try and "remove all the LCIS", as LCIS is thought to be a bilateral disease (if you have one area of LCIS, you may have many areas throughout both breasts and only bilat masts will "get it all" (but in fact, PBMs still won't remove all breast tissue, but the risk will be greatly reduced). I would ask your surgeon exactly what the purpose of any additional surgery is.

Results from BRCA testing usually takes about 2 to 3 weeks to return.

I'm not sure if tamoxifen has any contraindications with certain autoimmune disorders or inflammatory arthritis---are you followed by a rheumatologist? If so, that would be the one person to ask.

Anne

PuzzleMom5

Thanks Anne...I appreciate your input!  Didn't know genetic testing was such a wait, good to know.  Yes, I do see a rheumatologist.  Hopefully I will tolerate Tamoxifen better than i did Methotrexate, which suppresses your immune system.  I will discuss with her at my next appointment. Thanks again! I will update you after my appointment on Monday.

Linda12759

I went through a similar thought process when I was diagnosed with LCIS.  It was interesting that the plastic surgeon who did my breast reduction thought I should have a mastectomy.  He mentioned it in two post-op appointments.  He offered to order a second opinion with a very experienced oncologist.  I took him up on the offer.  That oncologist's opinion mirrored the first - not to have a bilateral mastectomy but to take Tamoxifen for 5 years with close observation. That's two oncologists looking at my diagnosis, my history and my risk factors.   My maternal grandmother had breast cancer...had a mastectomy and no recurrance.  My mom does not have breast cancer. I have no sisters or female blood relatives.  I have not had children which elevates my risk slightly.  I know I can always decide to have a mastectomy if I can't deal with the 6 month drill.  A dear friend of mine who had a mastectomy and is a cancer survivor said keep your boobs! So I am!  I pray you will find what is best for you!