LCIS worried

Crescent5

Thank you Carol. I don't want to scare anyone, but I do think it's important to know. If one can live with the risk, that's totally up to them. ILC only accounts for about 10% of all BC (from what I heard, but do your own research, ladies).

lisamarie68

I have my appointment with the plastic surgeon on March 6th and breast surgeon on March 7th , I am going to gl ahead with the pbmx and immed recon only because I cannot sit and wait ..dont want tamox. I had cervical cancer last year , and I feel I want to do everything i can to prevent any more .. im scared but I dont regret my decision as of now . I had a long talk with my mom and daughters and we all decided this is best for me . Like I said just for me. Hope all goes well November ..my heart and prayers are with u all 

carol57

lisamarie, It's fabulous progress to just make a decision, and with your cancer history, the spectre of cancer being possible again must have been tortuous.  Good luck in your consultations with the surgeons and with all that follows.

Carol

shabby6485

Hi to all, 

Unfortunately in the same LCIS boat with you.  Just diagnosed this week and doing research.  Leaning towards masectomy.  Really getting scared now that despite having masectomies, they still might find bc in there.  Does anyone know what the chances of upgrade are? Also, what about the nodes with this surgery? So confused and scared... 

lisamarie68

Shabby , sorry you have to join here . I had another Biopsy and they found more stuff ,my choice is based on my feelings of worry all the time and I don't want the tamoxifen for 5 years . but that is my choice. I dont know what they will find when I do my PBMX. hope nothing more , I am not sure if they take nodes , but I am thinking they do . I se the ps on Tuesday and the BS  on Wednesday so hopefully then I willl have more information for you then . The ladies on here have a lot of info ..hang in there . I do know you have time to make any decisions. LCIS is not invasivve so u have time to think about it .. Hugs 

Lisa 

leaf

Pubmed has been down for the last several hours, but when I've tried to find numbers about women who have had LCIS and nothing worse, and had prophylatic bilateral mastectomies, I have gotten no hits. 

Most of the info is about women with a deleterious BRCA mutation, who, most people think, have a higher risk than women with LCIS and a weak family history.  (Some BRCA mutation carriers have up to about a 85-90% lifetime chance of breast cancer, where the number for LCIS women is usually considered to be about 30-40%.)  Also, in one paper I read, BRCA carriers tend to have more 'interval' breast cancers - i.e. breast cancers that are detected in the intervals between their imaging/clinical exams.  

One of the problems is there are few women who have LCIS (and nothing worse such as DCIS or invasive.)

In past searches, the closest thing I could find was an INDIRECT report of women with prophylactic mastectomies who MAY HAVE INCLUDED some LCIS women (though they don't mention any LCIS  - and nothing worse - women.)  Even this blurb just talks about the Long-term incidence of breast cancer after mastectomy - not any upgrades found when they did mastectomies.

http://www.imaginis.com/breast-health-news/removing-healthy-breasts-reduces-breast-cancer-risk-dateline-april-17-2000

Its difficult, because if a person has a core biopsy that shows LCIS, then doesn't have anything worse on their excision (about 20% get an upgrade at excision), then, if they find something worse (such as DCIS or invasive) in the months following, then they wouldn't be diagnosed with LCIS but their 'something worse' - i.e. DCIS or invasive.  

When you use the seach term 'LCIS', you mostly get studies that either are showing how many women who had LCIS found on core biopsy who got something worse on excision, or else women who were initially diagnosed with LCIS *with* something worse, such as DCIS and/or invasive bc.

So its difficult to search.