I have LCIS, now what?

mshel

In September my obgyn found a small lump deep in my right breast. I had a mammo and then an ultrasound. They said i needed a biopsy. I have very small, dense breasts.

I got the biopsy and the radiologist contacted me with the results and said i was fine and come back for a mammo in a year. My obgyn calls and says i want you to see a specialist so i went to a breast specialist. She orders an MRI because she was concerned about the placement of the lump and the biopsy. Turns out they missed the lump.

I had my second biopsy and they found LCIS in the lump. She gave me options... one being a double mastectomy! I went with the lumpnectomy. They removed the lump and pathology results showed that LCIS is outside of the lump.

Today, i visit the doctor to talk about options and where to go from here. I'm just so confused. Anyone else have LCIS? She said my breast cancer risk is 40-60%. Just wondering what other women have done.

Anonymous

mshel------I was diagnosed with LCIS over 12 years ago and my risk is further elevated by family history of bc (my mom had ILC); my oncologists feel about 35%. I have been doing close surveillance of alternating mammos and MRIs every 6 months, with breast exams on the opposite 6 months, I took tamoxifen for 5 years, and now I have been taking evista for about 6 years for further prevention. I have been fortunate with very minimal SEs and clear scans overall these years. At that time of my diagnosis, I was given the 3 standard options for LCIS: 1) close monitoring, 2) tamoxifen, or 3) bilateral mastectomies. Even with my combined elevated risk, all my docs felt bilateral masts too drastic and not medically necessary. (so I chose to do 1 and 2.) Since LCIS is non-invasive, there is no rush; take all the time you need to research, talk to your doctors, and get 2nd opinions if you chose. The choice is very personal and no one can make it for you. One additional benefit from tamox (aside from it decreasing risk of invasive bc by up to 45-50%), is that it decreases breast density and makes it easier to detect things on mammo.

Anne

leaf

It would be good to look at your pathology report to see if you have the more common classic LCIS, or a variant LCIS. http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh... (you don't have to know most of this stuff, just hunt for the tables that show the different types and classifications of LCIS.) Variant LCIS is usually thought to be of higher risk than classic LCIS.

Just as Anne said, do your research, there is no rush, and there is no right answer for everyone.

I have classic LCIS, diagnosed 10 years ago, and took 5 years of tamoxifen. I have not had any breast issues since about 1 year after I started tamoxifen. I was getting just yearly mammograms and twice-a-year clinical exams, but recently I got upgraded to yearly breast MRIs because they found an additional risk factor (not BRCA.)

Do also know that when your docs give you a number that estimates your lifetime risk of breast cancer, they undoubtedly do not know that number very well. I have classic LCIS, and my first onc said my lifetime risk was about 30%, another onc said 30-40%, a Hall's breast cancer risk calculator online (do NOT use this unless you are prepared for a heart attack!!) - this has NOT been peer reviewed or compared to the appropriate populations, gave me at one point of a risk (without tamoxifen) of almost 90% (which undoubtedly is WRONG), and a 2nd opinion at an NCI certified cancer center that said 'someplace between 10% and 60%but probably closer to 10% than 60%. If you want more info, go to the literature.' Well, I did. But I said to myself, gee, this is really disturbing: I'm getting prediction ranges from 10% to 90%. That doesn't give me much help what to do. I'm going to do something differently if my risk is 90% than 10%.

With the encouragement of my PCP, I found a paper that says that for the modified Gail model (you are automatically excluded from this because you have LCIS), for individual women, the model is correct about 60% of the time, and incorrect about 40% of the time. Note that if the model was the worst model in the world, it would be correct 50% of the time and incorrect 50% of the time. If the model was perfect, it would predict correctly 100% of the time, and predict incorrectly 0% of the time. http://jnci.oxfordjournals.org/content/98/23/1673....

Now, you aren't eligible for the modified Gail model, but its the most commonly used breast cancer predictor. If the modified Gail model works this rotten for individuals, just think how well they can predict YOUR breast cancer risk when you have something unusual like LCIS.

It was only my PCP that really told me they don't know my risk well. I just met a colleague who has an entirely different situation, and none of her docs told her until waaay after the fact that the test they gave her was only correct 60% of the time.

Check with both your heart and head, take your time. You are different than anyone else. Even if 99.9% of people choose option X, option Y might be the right one for you. You may have risk factors for different treatments that are different than other people. You may feel differently than other people about certain options. Explore the risks and benefits of everything you consider.

When you get 'attacked' by a risk factor, its natural to want to remove that risk factor like you never had LCIS. When I first got diagnosed, I was shocked, too, to see one option was bilateral mastectomies. The first words of my breast surgeon to me were 'If you want bilateral mastectomies, I will fall down in my chair.' Now, this undoubtedly was her professional opinion, but this was BEFORE she asked about my family history or other risks (such as if I had a history of chest Xray treatment, such as for lymphoma). I think that this was improper, because if I was BRCA positive, or had chest Xray treatment for lymphoma, I would be at substantially higher risk of breast cancer.

So if you do get 2nd opinions, be prepared to get a variety of opinions. My first onc said, "Having cancer is like going into a black room with only a flashlight. You might see a bit of the picture, but you won't see the full picture." I just don't want you to get hurt, so you can be more prepared.

Gohan1983

Lobular Carcinoma in situ is considered as benign lesion, despite name: carcinoma (in opoosite to DCIS). However, risk of invasive cancer significantly increased. LCIS almost always exhibit ER/PR+ expression, so preventive endocrine therapy or bilateral prophylactic mastectomy is highly recommended.

http://www.ncbi.nlm.nih.gov/pubmed/22106556

MelissaDallas

Gohan, I know you are here on behalf of your grandmother's diagnosis for another reason. I wish, and you have also been told on other threads, to please stick to recommendations and comment on issues you have direct knowledge of

leaf

Yes, but how significant is significant?

I think that just about everything about LCIS is controversial, including the name.

I (with classic LCIS) have gotten estimates of my lifetime breast cancer risk as:

about 30-40% (onc #1), 2006

about 20% (onc #2), ~2009

from 10% to 60%, but probably closer to 10% than 60%, if you want more info, go to the literature. (NCI- certified cancer center), ~2008 (note the risk of the average woman in the USA is about 13%)

about 88% (without tamoxifen, Hall's breast cancer calculator, which has NOT been peer-reviewed or compared to populations - I have NEVER seen another figure this high.)

That's a pretty big range, even if you discount Hall's: 10% (less than the average woman in the USA) to 60%.

For example, recently this abstract states:

in case of non-in sano resection for ADH, FEA, ALH, LCIS (except pleomorphic type), RS, MLL: surgery does not seem to be necessary; http://www.ncbi.nlm.nih.gov/pubmed/26545856

In this 2013 study, they state: Lobular carcinoma in situ (LCIS) is a marker of increased risk of breast cancer. Current guidelines do not recommend mastectomy as a strategy for risk reduction for most patients with LCIS.... 10 % underwent biopsy only, 73 % underwent excision alone, 1 % underwent excision with radiation, and 16 % underwent mastectomy. http://www.ncbi.nlm.nih.gov/pubmed/23846782

I am NOT advocating mastectomy or no mastectomy; my only point is I think things are still controversial. They don't know how the existence of LCIS gives you a higher risk of subsequent breast cancer (DCIS or invasive).