Just diagnosed

Yes, the LCIS puts you at risk for invasive breast cancer more than ALH.  LCIS is a little farther down the road to cancer than is ALH.  I think most people suppose that ALH is a precursor to LCIS, but of course that would be difficult to say for certain.  We don't know, in the minority of times that LCIS and ALH leads to DCIS or invasive bc, why.  

Remember LCIS is a marker for increased risk of DCIS or invasive bc. The presence of LCIS and ALH does not mean it is your destiny to have DCIS or invasive.

For the women that have already been diagnosed with LCIS,  subsequent DCIS or invasive bc, if any, is usually found in the earlier stages.  That's because they are usually found earlier.

I know it is hard to be at higher risk for ILC, 'the sneaky one', than the average population.

{{{{Hugs}}}} as you cope with this anxiety of having higher risk and deciding what to do.  For 2 of the 3 options (close monitoring and tamoxifen), you can change your mind at a later date to another option.

cleomoon:  I've been having the same thoughts and am really condidering PBM also.  I'll be thinking of you, good luck with everything.

Hi. I'm Karen, I'm new here.  I was just diagnosed this past week. My Ob/GYN called me up, asked if anyone was there with me, (yes), and said good, because I don't want you to be alone. I have some very difficult news to share: you have breast cancer".  So that was how I was told.  Then she went on to say I had two things going on.  Lobular Carcinoma In Situ and Atypical Lobular Hyperplasia.  She listened to me sob as she tried to give me the info off the report.  I know i have several areas of ALH along with the LCIS.  

 I began to research these two things on the internet, and it seems to be the most controversial diagnoses you can get with breast cancer.  So much discussion on what is the right treatment.  I notice that some women and their doctors choose the "watch and wait" approach.  And on the other end of the spectrum, it seems quite a lot of women choose prophylactic bilateral mastectomies.  I gather that if you choose one of the in-between kind of treatments (MRI'S and mammo's alternating every 3 months) that it produces an enormous amount of stress, and it seems some women go with the PBM just to avoid that stress in the future.  

 I see a breast surgeon late tomorrow afternoon.  I am told that she is the best breast cancer doctor in my city.  Many, many people have said she is the ONLY doctor to see in this town if you want the best treatment.  So that makes me feel good.  But I can tell, it's going to likely be a ton of information thrown at me, and then lots of decision making.  I hope there can be more testing; maybe test the other breast for these same things? Maybe have the BRCA1 gene testing? Maybe go in and do excisional biopsies, to see if the LCIS or ALH are in more places than just the few pieces they took with the needle biopsy?? I mean, who knows.  It just seems all very confusing to me now.  I hope I can get some really concrete information, and I hope I'm not just stepping onto a rollercoaster ride of decisions to make.  

Karen------I'm sorry the ob-gyn gave you the news that way------it's been 6 years for me, but I still remember the meeting with my surgeon like it was yesterday. <<<HUGS>>>> There is a lot of controversy, but yes, LCIS technically IS breast cancer because there are cancerous cells contained within the breast lobules that have not broken thru into the surrounding breast tissue (the definition of a stage 0, in-situ breast cancer); but it is a NON-invasive bc, therefore many in the medical community don't consider it "cancer" since it is non-invasive. (although there are many doctors who emphatically do-----all my docs including my oncologist, breast surgeon, gyn, pcp and the pathologist as well----only my radiologist refers to it as a  high risk marker; I trust the opinions of the oncologist and pathologist as they are the specialists with regards to cancer). Was it diagnosed by stereotactic core biopsy? If so, they generally recommend a surgical excisional biopsy to make sure there is nothing more serious going on in there with the LCIS (like DCIS or invasive bc). That logically is your next step, unless you've already had it done. I am closely monitored with high risk surveillance--mammos alternating with MRIs every 6 months, breast exams on the opposite 6 month schedule, finished my 5 years of tamoxifen last fall and now have been on Evista for the past 6 months since I'm now post menopausal. Some are not comfortable living with the high risk and choose BPMs--we all have to choose what works best for our individual situation. But remember, there is NO rush with LCIS since it is non-invasive; take your time to do your research, ask lots of questions and get 2nd opinions if you want to. My oncologist and I have discussed genetic testing since my mom had ILC, but even with that close family history of bc, my insurance has said they won't pay (I'm going to try resubmitting with additional doctor letters). If they recommend MRI, I would have it BEFORE  the surgical biopsy as to not "muddy the waters" with post op surgical changes (that can just confuse the findings and lead to unecessary biopsies) or wait several months AFTER your surgical  biopsy till everything is completely healed inside and out. (ideally----try to get one BEFORE).

Anne

I agree with nash.  That is what the NCI site also says.  "The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer."http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

It does depend on your interpretation/definition of 'cancer' ( most consider it uncontrolled growth), but for the majority of classic LCIS patients, they will NOT have 'uncontrolled growth' i.e. invasive cancer, no matter what the cells look like, in their lifetime.

Although I am not very knowledgable about DCIS, from what I understand, I am guessing that they think that if DCIS is left untouched (no excision, no mastectomy, no radiation), then, over time, it is thought to eventually become invasive.  So I think the natural history of DCIS is different than classic LCIS.

Cleomoon- I'm glad that you have found the approach that is best for you.  That is the most important thing of all.  I'm sure it makes things a bit calmer to have made some of these decisions.  If, at a later time, you change your mind,  or decide not change your mind, you still have all 3 options open to you.

My oncologist and breast surgeon do not classify LCIS as a stage 0 because they say it is NOT cancer.  The oncologist says LCIS is a breast abnormality, the breast surgeon says abnormal cells are present but they are not cancerous.  It is all so confusing.  My oncologist says that doctors view LCIS differently and you are likely to get different opinions on the diagnosis.  He said that the general concensus in the medical community now is that LCIS is not cancer.  He gave me a statistic of a lifetime risk of developing invasive breast cancer at 25 to 30%, over a life time.  He really seemed to downplay the diagnosis but did stress the importance of close monitoring and Evista to keep the chances of developing invasive as low as possible.  I also spoke with a breast cancer surgeon from Duke that also said LCIS is not cancer.  So who do we believe?  I have to trust my doctors and hope and pray they are correct and take their advice.   But I certainly do have concerns and questions since there seems to be so much controversy with LCIS.

Sorry--I meant to say if the abnormal cells do not spread but stay in the lobes (not cells)

upcreek-----if the atypical cells are in the ducts, it is called ADH; if it is in the lobules, it is ALH. (it is possible to have both at the same time). In the last few years, there was mention of the possibility of reclassifying LCIS as lobular neoplasia, but that has NOT been widely accepted as they do not want to clump LCIS with ALH as LCIS is much more serious in nature and confers twice the risk of ALH.  (Personally, I think the controversy boils down to semantics; anywhere else in the body an in-situ cancer is still a cancer--malignant cells are still malignant (as per my pathology report). Perhaps it is time for pathologists to rethink the number system for the stages of bc to help differentiate between the 2 in-situ bc's (DCIS and LCIS) ????? Again, I'm certainly not trying to start any argument here--if the physicians can't agree about LCIS, how can we possibly???? So let's just "agree to disagree" as they say!

Anne

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Jessica945 - Please use some common sense and decency. I've reported both your posts.