LCIS Diagnosis--What Do I do next?

Michele---the P stands for pleomorphic. They think pleomorphic LCIS carries a slightly higher risk than classic LCIS, but they really haven't come to a conclusion about the exact risk of either (but classic LCIS is probably somewhere between 30 and 50% risk). But since you already had DCIS, that "trumps" LCIS and your treatment would be directed at the DCIS.

Anne

Nala:  I was diagnosed with LCIS in January after a biopsy for calcifications (I had previously had biopsies for calcifications and removed a fibroadnoma--two years ago when I knew something was wrong since having a problem in both breasts, what were the odds that something wasn't wrong??).  Anyway two years ago, everything was benign, but this time they found LCIS.  I was told by my breast surgeon that they would need to do another biopsy to reconfirm the diagnosis (which was fine with me) and to make sure that's all that was there.  Before surgery I had to have the MRI which showed another fibroadnoma this time close to the site where the LCIS was found, so I asked the surgeon to take that out while in there.  I was also referred to a breast wellness center at Duke University and told my options:  careful monitoring (testing every 6 months with mammos and MRIs and breast exams), clinical trials (things like random biopsies), or masectomies (I was told 30 years ago that would have been my only option).  After some research and soul searching, I decided I was going to do the masectomies.  I did not want this to take over my life and would rather beat cancer before it had a shot.  At least this way I wouldn't have to do chemo or anything.  If only...anyway, long story short, after the next biopsy they found invasive lobular carcinoma in the sample with the fibroadnoma.  The pathologist couldn't believe what he/she'd found--the surgeon never saw it.  So, I'm looking at it as a blessing.  I had already decided to have the masectomies anyway, so this made it easier.  I'm scheduleld May 7 to have they girls removed.  Hopefully there will be no more cancer, but we'll cross that bridge when we get there.  I will have to take tamoxifin (ask about that in your case as well as it is also recommended for LCIS) or have ovaries removed, but I can't face that right now.  I'll wait until I'm healed and a little more sane.  I think your doctor has jumped ahead a bit here as it is totally up to you how you proceed with this diagnosis.  Please follow your heart as this has to be something you have to live with the rest of your life.  My best to you as travel this road.  

Tabby - I am so sorry they found ILC, but glad that you found it early! Best wishes for your BMx and gentle healing. I will be thinking of you. Take care. - Jean

Thank you Anne and Jean!  You have been such a help along the way for me!

Nala:  I was told because my ILC is estrogen and progesterone positive I would probably end up on tamoxifin or have to have the ovaries out, but I am questioning the ovary removal as I too have found out that the ovaries are not the only source of hormones.  I'll find out more as I am referred to the oncologist after the pathologists take a look at the breast tissue after removal.  I am not currently on tamoxifin or anything else for "cancer" as everyone feels like it has been removed I guess but I'm sure those decisions are coming.

hi I am 49.5 and I am in the same boat. LCIS diagnosis with family history. Tomorrow I see the oncologist- (Yale, John Hopkins and Harvard) trained so maybe I will get some good answers. Currently BC specialist recommends tamoxofen and re do tests in 6 months.  I also hate this diagnosis. Asking for BRACA testing as well.  So I feel for you.  I will let you know my feedback. The only comfort I have gotten from this diagnosis is that I have some time to think and make decisions.... I know it bites.  take care,

What a day- the oncologist recommended a surgical excision citing statistics that people with LCIS have a possibility of having cancer between 15 and 38% of the time. If I want braca testing she will refer me to the hospital that she works in -part of her contract for genetic counseling first...  Disagreed with the surgeon to take tamoxifen (oncologist agreed with that) and wait 6 months for further testing. Okay I was okay almost defastated.  Got home and in the mail was my mri report that said benign come back in 6 months with a new rx (oncologist new this but still disagreed).  Wish that there was truly a team approach to this diagnosis.

Kelly Maryland- are you under a team approach? Hey its almost Thanksgiving!  

ellen1dg, I have the same diagnosis and have chosen the same route, no Tamoxifen either. Rather than be anxious I find it comforting that I am looked at every3-4 months and have have radiologic exams on a regular basis.In between I don't give it a second thought.It might never progress any further so why waste the time and energy .

Live.love and laugh often...............great medicine!!

Barbara

I am 49 and was diagnosed with ALH in May.  Just a small step before LCIS.  Sometimes they are lumped together as Lobular Neoplasia.  

I'm glad I have had to time to wrap my head around the situation and my options.  For me, and everyone has to come to these decisions on their own, I have chosen a prophylactic bilateral Mx with immediate Diep flap reconstruction.  I did not choose Tamoxifen based on the risks.  My mom had a stroke in her 50s and my dad died from a form of dementia.  And I did not choose watch and wait for a couple of reasons.  My cousin found a lump at 43 and died at 45.  Her mom, my aunt, also died in her 40s from BC.  I guess I would not be good at the testing every 6 months.  I could picture myself getting nervous around month 5 and not being able to really relax until I got the results back.  And I should mention I've never really been the nervous/hypochondriac type person.  I had not seen my primary doc in probably 5 years before this.

So, in 8 days, I will have my surgery.  I'm scared as hell, but I know it is the only decision that will give me true peace of mind.

My heart goes out to each of you ladies. As Anne said, it is a very personal and difficult decision as to what approach to take w/ LCIS. For me the Bmx was a no brainer, and I have not had a lick of regret since my surgery. For others, the close monitoring is certainly the best route. Either way, the good news is that you don't need to make any decision quickly. Hugs to all of you. And a special hi to Anne. Take care. - jean

PsychologistChild: Though I was seen at a Breast Center and the surgeon, radiologist and oncologist were in the same building, I never really felt that I had a cohesive team. Because I was so stressed, my husband made an appt. for me with an independent medical counselor.  This made all the difference for me.  She helped me work through all the information, but most importantly all the emotion surrounding it.  Eventually, I left my breast center for another one (I'm in a major city so there are options), found a new primary doctor that I love, and now feel like I've assembled a real team that is giving me excellent care.  Though not for everyone, I'm going to have a PBM in late January and all members of my "team" are on board and in contact with each other.  Having LCIS can be a burden but it does give you the gift of time, time to make a decision about your care, time to find caregivers that are right for you, etc.  Wishing the same for you, Kelly

I see what you mean. I guess I made a decision about what I was going to do and only then, when I was sure about it, did I find the docs that I'm now working with. Before I had made the decision I got lots of "whichever way you go would be perfectly reasonable".  The only thing that all agreed on was that if I did not go the surgical route, that my monitoring should definitely include taking tamoxofen.  I think that is because the LCIS that was found was the pleomorphic variety.  Also, I totally get where you're coming from and didn't at all mean to convey that just because you have some time to decide things that it doesn't suck to have this diagnosis and suck to have to make any decision at all. Best, Kelly    

 [edited to add: I've just been told that tamoxofen is in fact usually recommended with LCIS and I'll let someone else speak to that who has a better sense of the general recommendations.]

Hadn't realized how many LCIS diagnoses were out there. I was diagnosed in Oct of 2010. My sister was still recovering from her own breast cancer,so for me there was only one option-PBM's. That surgery went great on Dec. 1st 2010. I was out of the hospital by the next day. My husband and my sister, an OB-GYN, were able to decipher all the info for me. I felt like everyone was speaking greek to me. Took me 2 biopsies, a lumpectomy and the mastectomies to fully comprehend what my body was doing. Now in the reconstructive phase and that is more painful than the actual breast surgery. Wish that someone had warned me about the pain of the temporary expanders. Taking vicodin combined with advil for pain every evening. Perhaps it's more painful for me because I was very small breasted and not much room up top to work with. Lots of people told me how lucky I was in the beginning and I could only stare back at them in horror, but now truly, I feel lucky that I was able to catch this early and treat it my way.

I was diagnosed with both DCIS and LCIS last year, or actually the DCIS diagnosis was December 28 2009 and after they did the partial mastectomy and I went back for followup with surgeon he informed me that I also had LCIS.  That was all that was said about the matter.  I had gone through radiation (internal) for the DCIS, but my oncologist and radiation oncologist have never said anything more about the LCIS.  I am an RN and know what the LCIS diagnosis is, but shouldn't someone be talking to me about it??

lindar---your treatment was directed at the more serious of the 2, the DCIS. But having LCIS in addition, puts both breasts at equal risk in the future for invasive bc. So, yes, they should be discussing it with you. Have they ever suggested any tamoxifen? you might want to consider it as a preventative medication. You might also want to consider having MRIs in addition to mammos.

Anne

Oh Sunangel that's terrible! That did not happen to me and I was never told that radiation was necessary (and that's by several surgeons and several oncologists). I guess they mislabeled it as DCIS?????