LCIS/ALH Diagnosis

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vanzandtb
vanzandtb Member Posts: 2
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

So glad that I found this forum...I've been on an emotional roller coaster these past few weeks.  I was diagnosed with DCIS 3 1/2 years ago in my left breast at the age of 41 and subsequently had a lumpectomy and went through radiation and hormone therapy since it was hormone positive...things were going along nicely, just switched back to yearly mammograms this year, and in August went in for my mammogram and that day was told I needed to set up a biopsy since something was noticed on the right breast...  Went in for a stereotactic biopsy which was a horrific experience...Dr didn't numb it in the correct area so I felt EVERYTHING...didn't put a marker in, and big surprise, come to find out later I was her first patient she had done this on....Path results took a week when they told me it would be a couple of days.  Sample came back as LCIS/ALH.  I went to a breast surgeon who essentially said I needed to have the area removed, so another lumpectomy... went to the hospital on the scheduled day for a needle localization lumpectomy...and they told me the mammo machine broke...so they sent me home.  Rescheduled for later in the week.  Went there bright and early, got ambulatory services started,  and what do you know...machine broke again!!!!  So they sent me home again!!!  I was an emotional wreck.  The doctor called me livid with what was going on, and after getting the machine fixed yet again, worked me in that afternoon.  So my 9:00 surgery ended up a 4:00 surgery.  Just went in for the results yesterday, and big surprise, I have to wait again for results from pathology... waiting on the test to see if it is invasive...   

So...the questions I pose are ...wasn't being on Tamoxifen supposed to prevent this from re-occuring?  I realize I can't make any decisions until all the results are completed, and I realize LCIS/ALH is a precancer, but do I need radiation since I had a lumpectomy?  I really don't want to have to go through all that again...I was ready to have them taken off, but the doctor told me not to make that drastic decision yet.   Is there another medication that works better than Tamoxifen to cut the estrogen? 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    vanz--so sorry to hear of all that you had to go thru....Yes, the tamoxifen is supposed to help prevent both the invasive bc's and the non-invasive bc's (but decreasing the risk by up to 50%), but it doesn't always work for everyone. (my bs quoted it works about 50% of the time). Your LCIS and ALH may have been there all along and just weren't detected.  So the tamox actually may have prevented you from developing an invasive bc during the time you've been taking it.  LCIS is felt to be a bilateral disease (most often found to be multicentric, multifocal, and bilateral): so radiation is not done as they wouldn't know where to radiate, since it could be anywhere throughout both breasts. Having it in one spot or in many spots puts you at the same level of risk. The only other preventative medication used with LCIS is Evista, but can only be used if you are post menopausal. It doesn't work "better" than tamox; it is supposed to be equal to tamox in preventing the invasive bc's, but it doesn't prevent the non-invasive bc's. It is supposed to have less serious SEs than tamox overall. Praying you get good results soon and that nothing more serious is found.

    Anne

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  • leaf
    leaf Member Posts: 8,188
    edited October 2009

    Hi there vanzandtb!  I am so sorry you have such an awful time with your biopsies!  That sounds like a NIGHTMARE! 

    I am not an expert on DCIS (I don't have DCIS; the closest I have is ductal hyperplasia and (classic) LCIS 'with pagetoid spread into the ducts'.  

    Yes, you do take tamoxifen to help prevent this from happening.  But that doesn't mean tamoxifen is 100% effective in preventing further breast conditions.  LCIS is usually ER and/or PR positive.  Ignoring your DCIS (because I don't know what role that plays in the big picture), tamoxifen doesn't reduce the incidence of further pre-cancer or cancer to 0%, it just reduces the incidence of pre-cancer or cancer. (I think by about 40-50%?)  http://www.breastcancer.org/risk/ask_expert/2006_02/question_33.jsp

    We really don't know the natural history of LCIS.  It is often bilateral and multifocal (they know this because they used to routinely give LCIS women prophylactic bilateral mastectomies), but even if it isn't, if a person gets cancer after having an LCIS diagnosis, the cancer is often in an area that was previously considered normal.  So we really don't know the natural history of LCIS.  In a small number (no one will commit to a number or range) of cases, LCIS may be a non-obligate precursor of cancer.  But if an LCIS patient gets invasive cancer, most do get IDC.  The breast risk of LCIS is to both breasts, not just one breast, even if there is only one small spot seen in one breast.  They don't understand the natural history of LCIS.  Its a strange condition.

    Radiation is not normally used for LCIS. (I have found 2 papers from France where they were using radiation.  But if you've had radiation, from what I understand, they usually can't do radiaton twice.) 

    For plain LCIS and nothing worse (DCIS would be considered worse), the usual options are watchful waiting (with screening of course); watchful waiting (with screening of course) with antihormonals (as far as I know, only tamoxifen and raloxifen have been formally approved, though I may be wrong about this); and bilateral prophylactic mastectomies (usually for patients with a strong family history).  

    You could have an oopherectomy if you are pre-menopausal.  There are, of course, other antihormonals (for example, this is a clinical trial with exemustine for postmenopausal women) http://www.cancer.gov/search/viewclinicaltrials.aspx?version=healthprofessional&cdrid=363802)

    In this  (STAR from 1999) study, tamoxifen and raloxifen decreased the incidence of invasive cancer equally, but tamoxifen did a better job at decreasing pre-cancerous conditions (57 vs 80 people), but these numbers were not statistically significant. Note that only 9.2% of this group had a personal history of LCIS. http://www.ncbi.nlm.nih.gov/pubmed/19213563, http://www.ncbi.nlm.nih.gov/pubmed/16754727

    I'm sorry you were diagnosed with LCIS and ALH.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Hi Vanzantb

    So sorry you have found yourself here and having to deal with DCIS and now LCIS/ALH.  It is bad enough to have to deal with your diagnosis, but to have gone through what you described is awful. You have found a great place with very wonderful, knowledgeable and brave ladies.  I personally  know it has been a Godsend for me. 

    I am 46 and was diagnosed with LCIS/ALH this past July after excisional biopsy and was told of the same options as both Anne and Leaf talk about.  High surveilance monitoring every 6 months, monitoring with tamoxifen or bilateral mastectomies.  Unfortunately for me, they are still not done with me yet and I will be having more biopsies done next week.

    Hoping your get good results from your surgery soon.

    Cathy

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