Confused

I was diagnosed with LCIS after my DCIS was removed.  My surgeon is not too concerned, but I am taking Tamoxifin to lower my risk.  My understanding is that LCIS is a marker that says you are at a higher risk in that area for cancer to eventually appear.  My surgeon said careful monitoring and the Tamoxifin should be all that I need at this point.  The Tamoxifin scared me after reading what many women have experienced, but it has been three weeks and absolutely no side effects- phew!  I just turned 40 and have 3 kids, much like you.  It is scary, but this sight helps me a lot.  I did end up having to excisionals- one to get rid of a clustered group of calcifications which then proved to involve the DCIS and the second to get rid of the DCIS with clear margins, which it did.  Now I have the LCIS left.  Please feel free to PM me if you'd like, sometimes that is an easier way to communicate.  It is very easy to be confused, but through a lot of reading, I feel a little better about things.  I too had an MRI and the nurse said it didn't matter all that much what time of the month it was- if something was going to show, it was going to show... I also ended up having two stereotactics, which were no big deal.  Just be sure you are going to a good doctor, ask questions and go for a second opinion if you need.  Don't worry, we're here for you!

I would not worry too much about the LCIS. It increases your risk of developing cancer some but it is not necessarily a  precuser to invasive cancer. You should be OK with a drug like Tamoxifin( if your are PR+) and close monitoring. It doesn't hurt to have an excision just to check that nothing is lurking, the MRI's are usually pretty good at spoting cancers although they are very sensitive and have a high false positive. Better to look at something suspicious than not see anything at all. Excisions/ lumpectomies are really no problem, it may set you back one day.

Good Luck.

1. Yes, it is your decision whether or not to have the area excised.  Studies vary, but after they find LCIS (and nothing worse) in a biopsy, they find that in about 20% of cases, they find something worse (DCIS or invasive) after excision.  Whether or not you want to take this chance is up to you.

Do note that there are some risks to having an excision.  I had one, and I advised the surgeon to err on the side of taking out more than less.  Unknown to me, she went all over my breast (internally).  A year later I needed 2 biopsies, one of which was inches away from my initial 'area of concern' (calcifications).  It was found to be scar tissue (which must have been from my excision.)  A major institution opined that I should not have any routine screening  MRIs because I have so much scar tissue, not even a baseline.

2.  If you haven't had someone go over your family history, do that.  I had genetics counseling.  It was awful to try to find at what age my grandmother got breast cancer, etc.  Genetics counseling is usually done at a Major Institution.  I'm very glad I had genetic counseling.  Only about 10-20% of breast cancer is thought to be from single mutations (such as BRCA).  (There are probably other single genes that we have not discovered yet - in other words, there are women who have absolutely horrible family histories - with almost all the female members getting breast cancer - yet test negative for BRCA.) The best genetics counseling is done by a board certified genetics counselor, usually at a Major institution.  Your insurance may or may not pay.

3. The normal options for LCIS are:

a) Watchful waiting (the minimum scenario is yearly mammograms and twice-a-year clinical exams).  Others here also get annual MRIs.  Insurance and/or oncs may balk at this.

b) Watchful waiting (e.g. everything in a) above) plus antihormonals (tamoxifen, or other antihormonals.  The other antihormonals are usually reserved for post-menopausal women.)

c) Prophylactic mastectomies.  This may be becoming more popular???  but is sometimes reserved for women who have a bad family history.  (If you have BRCA, then your BRCA risk is much larger than your risk from LCIS.)

Note: different breast risks are NOT necessarily additive.  If you have 3 risk factors for breast cancer: x, y, and z, your total breast cancer risk may be x+y+z, but it may only be x, or more than (x+y+z) or less than (x+y+z).  They have to examine the population of people with risk x+y+z to find out what their risk really is.  And even if they know the risk for the group of people with x+y+z, this may not help the individual person with x+y+z.  If they compare random individuals with x+y+z, their  individual risk score may be LOWER than  random individual people without risk factor x,y, or z.  This is what seems to happen in the Gail model.

Since LCIS (with nothing worse) is an unusual finding, there aren't many LCIS women with which to do studies.

Ask your doc about each option.  You should be in no rush to make your choice (unlike our sisters with invasive.)  You can switch from option a or b to c, but c (mastectomy) is an undo-able choice.  There are both benefits and risks with mastectomy. 

There is no 'right' choice because there are so many unknowns.  The risk of stroke/endometrial cancer/cataracts with tamoxifen need to be weighed against watchful waiting alone or mastectomy (risk of unpleasant surgical results, lymphedema.)  You will make the right choice for you.

Hi 2mygirls,

I was just dx with PLCIS in June- no family history of cancer.  I had a needle biopsy and then excisional biopsy to make sure no DCIS present.  I was extremely emotional regarding this dx and my first thought was to take them off!!  I met with two excellent medical oncologists who suggested Tamoxifen and close monitoring.  Both oncologists are highly regarded in NYC/Long Island.  Since PLCIS/LCIS is not cancer, there is time on your side to make treatment decisions after dx has settled in.  Risk rate must be fully understood, the average woman without risk factors has a one in 7 chance of getting breast cancer.  LCIS alone no other risk factors puts you at 1 in 3-4 chance of ever developing breast cancer. My plan is to begin tamoxifen in September and see how I feel taking the drug, Tamo will reduce my breast cancer rate by 50% and that will put me in the same risk rate as the average women, this is an insurance policy. In my mind the benefits of this drug outweigh the side effects.   I am sure the first year will be stressful, but anything found will be very very early.  Should I develop DCIS or other breast cancer I will then do a PM. But for now I am going the Tamo route first.  My medical oncologist is willing to work with me should I experience side effects that are intolerable. 

 I am at peace with my decision and I made it based on facts provided by Medical Oncologists not emotions. 

Best of Luck to you.

Beth