newly diagnosed with LCIS and puzzled

Hi there 62192. Welcome to our forum! I am sorry you had to join us, but you found a good source of support.



It sounds like you had an excision of the area, right? I think that's one thing that most people agree should happen once a biopsy reads LCIS and nothing worse.



It is a very confusing diagnosis. There is controversy in almost every aspect of LCIS, from what it should be named, how frequent it occurs in the general population, what risk of breast cancer it imposes, and what treatment (if any) is appropriate.



In my case, I went in for exams every 3 months for a year or so, then it dropped to clinical breast exams every 6 months plus yearly mammogram. (I've been on tamoxifen since 7-06.) According to ACS, it is controversial whether LCIS with nothing else should be followed with MRI for screening. A consult I had with a major institution said I had too much scar tissue. I have a lot of problems with this ACS paper with regard to LCIS (see my other posts on other threads) but here's the link to the paper. http://caonline.amcancersoc.org/cgi/content/full/57/2/75



There is NO RUSH to decide which option is right for you, unlike our bc sisters who have DCIS or invasive.



Even if you decide on prophylactic bilateral mastectomies (PBMs) (my breast surgeon is against this for me), most reputable breast surgeons will make you wait several/many months to make sure emotionally that this is what you really want. The NCI website states that most breast surgeons do not encourage PBMs for LCIS alone. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6 The situation would probably be different if you were BRCA positive. (It sounds like you have a low risk for BRCA. If you have few women in your family tree (i.e. for example you have no sisters and your mother and father had no sisters), then you might want your family evaluated more closely.) Remember, only about 10-15% of breast cancer is thought to be caused by genetic mutations of a single gene (most commonly BRCA.) Most bc is sporatic.


One physician opined that a reanalysis of a paper indicated that a bad family history (first degree relative with bc) only puts you at higher risk for bc (beyond the risk you already have for LCIS) if you were diagnosed with LCIS before the age of 40. If you look at the Port paper, about 80% or more of the women with LCIS who were diagnosed with bc had a first degree relative with bc. These numbers in the Port study are too small to make any meaningful statistical value, but they are consistent with the idea that family history may NOT put you at higher risk (beyond that of LCIS) if you were diagnosed with LCIS after the age of 40. I'm sure this, as with all in LCIS, is controversial.



For tamoxifen or raloxifene, you can try them out if you want, and if they aren't for you then you can stop.



We have had women with LCIS only who have posted here who have been recommended everything from screening only with annual mammos and biyearly exams with or without MRIs, tamoxifen or raloxifene only with the screening previously mentioned , or prophylactic bilateral mastectomies.



I have been told by different health professionals that my LIFETIME risk of breast cancer is anywhere between 10% and 60%, but one breast cancer risk calculator, which has NOT been peer reviewed or compared to populations, gave my risk as >85%. But I think the most reasonable guess is that the risk is somewhere around 0.5 or 1% per year. So this means if you were diagnosed with LCIS at age 45, and expect to live until the age of 80, that your risk might be about 80-45=35%, then subtract those women who die from something else before they reach 80, and the risk of getting breast cancer in the PAST, so it might really be something like 20 or 30% (just guessing). If you opt for tamoxifen or raloxifene, this risk might be cut in half, and it would be quite low indeed if you have PBMs.



You may want to read the 'moving too slowly' thread and the 'what would you do' (for more on statistics and the failings of breast cancer models) threads in this forum for more reactions and experiences of different LCIS women.



Feel free to ask any questions you might have.



There's no consensus about this. There is no right or wrong decision, there is only the decision that you make that is best for YOU.

62192,

Take your time with your decisions. Get informed. As soon as I was diagnosed I was talking mastectomies. Too soon. My family was horrified at how matter of fact I was about "lopping off the girls". When I was done with the lumpectomy I was so happy I still have my breasts and there is a medicine I can take in the meantime and closely monitor. I would NOT say that a month or so ago. I was totally against monitoring and tamoxifen. Now I have been on it for almost a month and I will have alternating mammograms and MRIs. So please take your time to settle in with your diagnosis, and ENJOY your new smaller (and I am assuming more comfortable) girls!

Kimber

I can't really add much to what has been said. LCIS, being found incidentally in your case, is a wake up call, but does not necessarily mean an emergency. Read and think, but don't panic. You will eventually come to a decision about what is going to work for you. Just don't ignore it. At the very least, get regular exams and take care of yourself.

Anne

Hello 62192. I was diagnosed with LCIS in December 07 after having a biopsy to determine what was showing up on the mammo. The suspicious area was nothing, but then this LCIS was found. Like you, I was all for mastectomy because I didn't understand what LCIS really meant. I knew it was a precancerous situation, but thought that the LCIS actually turned into cancer. Now that I know it increases my risk for any type of breast cancer I am rethinking my original decision and have decided to forego the surgery. I have also decided against the drugs (tamox or evista) because the possible benefits for me do not outweigh the negatives. Like Leaf said, the increased risk is there, but even after 5 years of not doing any drugs, my risk will stand at 20% (12% is the risk for general pop + 3% increased absolute risk with LCIS + 1% increase per year). On a drug the risk is only reduced by 2.5 percent over a 5 year period. So even without taking a drug, after 5 years you still have an 80% chance of NOT getting breast cancer. Pretty good odds I think. I've never had to take any medication and I am reluctant to begin now. I'm a healthy 57 year old who exercises, am at a healthy weight, am eating better foods, drinking less wine, take vitamins and calcium and use 1 tsp of home-ground flaxseed daily in my cereal at the suggestion of my cancer center's nutritionist. I may still get cancer, but I refuse to be controlled by my condition. This board is a great place to gather lots of information. So keep reading everything you can about LCIS and once you get your brain around the situation, I think you will be able to make wise decisions and gain control of your life. Good luck! Pat

About tamoxifen: as far as I know there are NO studies that I know of that have looked at tamoxifen IN LCIS women beyond 5 years. So in that sense we don't know. I don't know of any studies of tamoxifen in women who are high risk but have never had bc beyond 5 years.



We DO know that tamoxifen does decrease the incidence of breast cancer beyond 5 years in women who have had estrogen/I think progesterone positive invasive breast cancer when they stop tamoxifen at year 5. I've seen studies that says you still get some effect from the tamoxifen under these circumstances even after like 10 or 15 years, when tamoxifen was stopped 5 or 10 years previously. There was one study (if I remember right, and I may not be remembering right) that after 10 years of continuous tamoxifen there was an increase in endometrial cancers or something.



The STAR trial (of postmenopausal women) compared tamoxifen with raloxifene in high risk women who had not yet had breast cancer for the first time. I don't think it lasted more than 5 years, but I also don't know if they are continuing to follow these women.





62192: You very well may be in a special category with breast reduction. The reason they do excisions after LCIS is found on biopsy is to ensure that you don't have something worse going on. Since they removed parts of your breast in breast reduction, they undoubtedly looked at the pathology of those removed parts - otherwise they wouldn't have found your LCIS. When my surgeon did my excision, she looked for any pulling, which I'm sure your surgeon would have been looking for too.





Its wonderful that we all can come to the right decision for each of us in our own way. There is no one right way, only the best way for each of us.